Bioethics Research Library The Joseph and Rose Kennedy Institute of Ethics

bioethics.georgetown.edu

A Guide to the Archival Collection of

The Robert Cook-Deegan Human Genome Archive

Set 3

April, 2013

Bioethics Research Library

Joseph and Rose Kennedy Institute of Ethics

Georgetown University Washington, D.C. Overview

The Robert Cook-Deegan Human Genome Archive is founded on the bibliography of The Gene Wars: Science, Politics, and the Human Genome. The archive encompasses both physical and digital materials related to The Human Genome Project (HGP) and includes correspondence, government reports, background information, and oral histories from prominent participants in the project.

Hosted by the Bioethics Research Library at Georgetown University the archive is comprised of 20.85 linear feet of materials currently and is expected to grow as new materials are processed and added to the collection. Most of the materials comprising the archive were obtained between the years 1986 and 1994. However, several of the documents are dated earlier.

Introduction

This box listing was created in order to assist the Bioethics Research Library in its digitization effort for the archive and is being shared as a resource to our patrons to assist in their use of the collection.

The archive consists of 44 separate archive boxes broken down into three separate sets. Set one is comprised of nine boxes, set two is comprised of seven boxes, and set three is comprised of 28 boxes. Each set corresponds to a distinct addition to the collection in the order in which they were given to the library. No value should be placed on the importance of any given set, or the order the boxes are in, as each was accessed, processed, and kept in the order in which they were received.

Every effort was made to maintain the integrity of the boxes in the order they were processed. Except in cases of damage and materials that were oversized that required special processing the materials have been kept in the exact order that the Bioethics Research Library received them in.

In addition, every effort was made to be faithful to the headings and labeling of the materials in the collection. If a folder, binder, or packet did not have a specific label identifying it generic labels were added to assist in processing. For example, a folder with no identifying label is identified as Folder 1 in the box listing. Any additional unlabeled folders in the same box follow a sequential pattern, i.e. Folder 2, Folder 3, etc. Each individual box holds to this pattern. This means there are multiple folders with the heading of Folder 1. Thus when citing an unlabeled item it is important to use the exact set and box number in order to locate that item. For example, Set 2, Box 6, Folder 2. Also note that every effort was made to properly title individual items. In many cases, especially with correspondence and memos, there is not a specific title associated with that item. For clarity sakes these items are labeled as being from a specific person or department to another specific person or department. In cases where no title or author was present the first line of the document was used as a title.

Each set has a separate box listing. It is expected that researchers and scholars using the collection will need to search in each set’s listing in order to locate relevant materials. Each set is completely text searchable to aid in this process. It is highly suggested that researcher use the find feature (control + f in most applications) in order to aid in the use of the box listing. Each set’s box listing comprises dozens of pages and in the case of set three the document alone is 157 pages long.

A presence for the archive has been established on the Bioethics Research Library and can be accessed by visiting https://bioethics.georgetown.edu/library-materials/digital-collections/robert- cook-deegan-human-genome-archive/

On this page you will find links to the full version of The Gene Wars, information linking to other websites that are working on preserving the history of the Human Genome Project, and links to digital reproductions of items from the collection created by the Bioethics Research Library.

A permanent link to this series of guides will also be maintained on Digital Georgetown:

Set 1 - http://hdl.handle.net/10822/708922

Set 2 - http://hdl.handle.net/10822/708923

Set 3 - http://hdl.handle.net/10822/708925

Updated April 17, 2014 CNN Acknowledgements

This guide would not have been possible without the significant assistance of several people.

First and foremost is Laura Ruth Barry whose able support, creativity and tireless efforts in wrangling both the physical collection and the data to create this guide cannot properly be conveyed in words.

Georgetown University students were integral in processing the materials on an item level basis. Jennifer Young, Joseph Wiedemer, Jade Walsh, Rebecca Kruser, Ta-Chueh Melody Hsu, Mary Laura Scalise, Rachel Cox, and John Sperry Nickerson. Without their assistance this project would have been stuck in neutral.

Anita Nolen, former archivist at the Bioethics Research Library, who first received and accessed the materials 20 years ago when they were first donated. She left the collection in such amazing shape that starting the process of digitizing and making the collection available to a larger audience was considerably eased. She also let a young preservationist pick her brain and play in her toy box. It was greatly appreciated.

Mark Hakkarinen who listened, advised, and help push on days when the work seemed overwhelming.

Martina Darragh, Patty Martin, and Roxie France-Nurriden, my “team” (which should really read that I am part of their team), not enough can be said for all the patience, teaching, and support you have offered me. Thank you.

Of course I’d also like to thank Dr. Robert Cook-Deegan who answered innumerable questions, made invaluable suggestions, and showed flexibility (and still does so) in how to approach the project.

Last, but not least, I would like to thank all my former and current colleagues at the Kennedy Institute of Ethics and Bioethics Research Library for creating an atmosphere where knowledge and the preservation and access to that knowledge is always strived for. I am not sure where else in the world where so many different people consistently strive to ensure that knowledge is shared freely and without concern of who benefits most from that information. It is truly inspiring.

Thank you all,

Nat Norton

4/10/2014

The Robert Cook-Deegan Human Genome Project Archive Set 3

Box Listing

Cook-Deegan Box 1/28

ESLA concern in Europe & Japan ● Article: “Japan Faces Big Task in Improving Basic Science.” Science, vol. 243. (10 March 1989). ○ Article: “France Introduces Bioethics Law.” Science, vol. 243. (10 March 1989). ● Report: “Lessons from the Past: Prospects for the Future. The Human Genome Project and The Social Contract: a Law Policy Approach.” Judge C. Byk ● Letter: from Judge C. Byk. (20 May 1989). ○ Questionnaire concerning the ethical and legal problems raised by the mapping of the human genome ● Letter: from Cook-Deegan to Judge Byk. (14 July 1989). Answering questionnaire. ● Letter: from Prof. Benno Müller-Hill to Dr. James D. Watson. (7 June 1990). Regarding HUGO and Valencia Workshop. ○ Abstract: Lessons from Eugenics and Racial Hygiene. Benno Müller-Hill. ○ Position paper: Bioscience in Totalitarian Regimes: The Lesson to be learned from Nazi Germany. Benno Müller-Hill. For Dahlem Conference, Nov. 25-30, Berlin. ● Letter: from C. Thomas Caskey to Cook-Deegan. (17 June 1988). Regarding Sixth Boehringer Ingelheim conference on “Social Consequences of Genetic Engineering.” ● Program: Sixth Boehringer Symposium. “Social Consequences of Genetic Engineering.” (June 12-14 1988). ● Letter: from Judge C. Byk to Roger C. Herdman. (31 May 1989). Requesting copies of OTA materials. ● Letter: from Dr. Gerhard Wolff to Cook-Deegan. Sending copies of the two statements of the Commission for Public Matters and Ethical Questions, copy of the new German gene technology law. ○ Report: Erklärung der Gesellschaft für Humangenetik (04.12.1989) ○ Report: Erklärung der Gesellschaft für Humangenetik (08.04.1989) ○ Report: Bundesgesetzblatt (June 1990). ● Letter: from Celeste Michelle Condit to Cook-Deegan. Requesting transcripts of scientific conferences addressing ethical and social implications of the Genome Project. (5 Sept. 1990). ● Letter: from Judge C. Byk to Cook-Deegan. Sending copy of address to the Valencia Workshop. (19 Nov. 1990). ● Names and contact info, “Study Group on Ethical, Social, and Legal Aspects of the Human Genome Analysis Working Party.” Brussels. (14 July 1989). ○ List of Chairmen and Speakers, “Symposium on Human Genome Research: Strategies and Priorities.” (29-31 January 1990). UNESCO Headquarters, Paris. ○ Tentative List of Participants, “Unesco Scientific Co-ordinating Committee (SCC) First Meeting.” (1 Feb. 1990).

Cook-Deegan Box 1/28

Unnamed Folder 1 ● Transcript: “Impact of the New Biotechnology Products on Individuals and the Environment: Genetic Testing/Gene Therapy.” Thomas Murray. (5/12/88). ● Report: “Proceedings of the Fourth Annual Lawrence Hall of Science High School Science Symposium on Science and Societal Issues.” (1989). ● Article: “Bad Luck Insurance.” Nature, vol. 347. (20 Sept. 199?) ● Article: “Letting the genome out of the bottle: the ethics of human genetic research.” Faye Sholiton. Cleveland Jewish News, vol. 53, no. 17. (20 July 1990). ● Article: “Genetics-Based Testing Could Create a Biologic Underclass.” The Scientist. (27 Nov. 1989). ○ [Continuation of article]: “New Biologic Tests Pose a Threat to Privacy.” The Scientist. (27 Nov. 1989). ● Article: “Genes reach the medical market.” Christopher Joyce. New Scientist. (16 July 1987). ● Article: “Genetic Testing May Mark some People as Undesirable to Employers, Insurers.” David Stipp. Wall Street Journal. (9 July, 1990). ○ Article: “After Recent Setbacks, NASA Faces a Fight Over Project Funding.” Bob Davis. Wall Street Journal. (9 July 1990). ● News: “The pros and cons of freedom of access to human genome data.” Peter Coles. Nature vol. 333. (23 June 1988). ● Article: “High-Tech Foutunetelling.” Robin Marantz Henig. The New York Times Magazine. (24 Dec. 1989). ● Article: “1989 American Society of Human Genetics Social Issues Committee Report.” Am. J. Hum. Genet, 47. (1990). ● Report: “The New Genetics and the Right to Privacy: A Conference for Journalists.” Arlington, VA. (30 Nov. 1989). ● Article: “The Telltale Gene.” Consumer Reports. (July 1990). ● Handwritten note from Gary Ellis to Cook-Deegan (24 July 1990). ○ Handwritten note from Faye Sholiton (?) to Cook Deegan (20 July 1990). ○ Article: “Letting the genome out of the bottle: the ethics of human genetic research.” Faye Sholiton. Cleveland Jewish News, vol. 53, no. 17. (20 July 1990).

NonRifkin critics concerned about misuse ● Handwritten letter from Dorothy Nelkin (?) to Cook-Deegan. (June 1) ○ Advertisement for “Dangerous Diagnostics: The Social Power of Biological Information” by Dorothy Nelkin and Laurence Tancredi. (Fall 1989). ○ Table of Contents of “Dangerous Diagnostics: The Social Power of Biological Information.” Dorothy Nelkin and Laurence Tancredi. ● Letter: from Nachama L. Wilker to Cook-Deegan. Forwarding position papers of the Council for Responsible Genetics. (10 Jan. 1990). ○ Position Paper on Human Genome Initiative ○ Position Paper on Genetic Discrimination Cook-Deegan Box 1/28

● Symposium Manuscript—Session 1: “Evaluating the Human Genome Project.” Organized by Ruth Hubbard and Nachama Wilker. (16 Sept. 198?) ● Symposium Manuscript—Session 1 (continued): “Evaluating the Human Genome Project.” Organized by Ruth Hubbard and Nachama Wilker. ● Abstract of Invited Paper for “Evaluating the Human Genome Project”: “Mapping the Human Genome: Implications for Civil Liberties and Public Policy.” Philip L. Bereano. ● Abstract of Invited Paper for “Evaluating the Human Genome Project”: “Why the Sequencing Project Cannot Meet Its Goals.” Richard Lewontin. ● Abstract of Invited Paper for “Evaluating the Human Genome Project”: “Prospects for Genetic Diagnosis and Intervention.” Ray White. ● Paper: “Evaluating the Human Genome Project Introduction.” Ruth Hubbard. (January 1989).

Congressional concern about misuse ● Memo from Eric Juengst and Bob Cook-Deegan to Jim Watson. (9 July 1990). “Insurance and Genetic Tests.” ● Article: “Technology, Cost, Cooperation, Ethics Challenges Face Genome Mapping Plan.” Charles Marwick. (15 Dec. 1989). ● Report: “The Biotechnology Competitiveness Act of 1987 (S. 1966).” ● Memo: from Cook-Deegan to Gretchen Kolsrud. (14 June 1988). Meeting with Barbara Mikulski.

ELSI origins other than Congress ● Memo: from ELSI Program, National Center for Human Genome Research (NCHGR). FY 1990 Program Activities as of June 11, 1990. ● Article: “Public debates on ethics.” Christine McGourty. Nature, vol. 342. (7 Dec. 1989). ● Memo: from Chief, Bioethics Program, CC, NIH to Director, NIGMS. (6 August 1986). Ethical and social implications of mapping the genome. ● News: “Genome Project Under Way, at Last.” Leslie Roberts. Science, vol. 243. (13 January 1989). ● Report: “NIH Guide for Grants and Contracts.” Vol. 18, no. 7. (3 March 1989). “Ethical and Legal Studies Relating to the Program to Map and Sequence the Human Genome.” ● Article: “Genome Project Spawns New Research on Ethics.” G. Christopher Anderson. The Scientist. (22 January 1990).

Houston Workshop, Dec. 1989 (1) ● Report: “General YAC Cloning Protocol.” H.M. Albertsen, D. Le Paslier, H. Abderrahim and D. Cohen. (Dec. 1989). ● Report: “X Chromosome Workshop.” ● Evaluation: Comments from David Burke on manuscript “Report of the large DNA insert cloning workshop.” By Cook-Deegan, Belinda J.F. Rossiter, Mark Guyer, David L. Nelson, C. Thomas Caskey. For publication in Genomics. (2 Feb. 1990). Cook-Deegan Box 1/28

○ Evaluation from Reviewer II on manuscript “Report of the large DNA insert cloning workshop.” ○ Evaluation from Reviewer III on manuscript “Report of the large DNA insert cloning workshop.” ○ Evaluation from Reviewer VIII (Dr. McK…?) on manuscript “Report of the large DNA insert cloning workshop.” ○ Evaluation on manuscript “Report of the large DNA insert cloning workshop.” ○ Evaluation on manuscript “Report of the large DNA insert cloning workshop.” ● Fax from Hans Albertsen, CEPH, Paris, to Cook-Deegan. YAC review. (2 Feb. 1990). ○ Memo from Michael Cantwell to Cook-Deegan. (28 Dec. 1989). YAC cloning issue. ○ Memo from Michael Cantwell to Cook-Deegan. (27 Dec. 1989). Special issue on large fragment cloning. ○ Fax receipt (27 Dec. 1989). ○ Letter from Cassandra L. Smith to Cook-Deegan. (21 Dec. 1989). YAC issue. ● Report: “Report of the Large DNA Insert Cloning Workshop.” Houston, TX. December 12-14, 1989. Cook-Deegan, Belinda Rossiter, Mark Guyer, David L. Nelson, C. Thomas Caskey. (3 copies) ● Notes in notepad

Houston Workshop, Dec. 1989 (2) ● Evaluation from Reviewer IV (Joanna?) on manuscript “Report of the X-chromosome workshop.” By Cook-Deegan, Belinda J.F. Rossiter, Linda Engel, David L. Nelson, C. Thomas Caskey. For publication in Genomics. (02/07/1990). ○ Evaluation from Reviewer III on manuscript “Report of the X-chromosome workshop.” ○ Evaluation from Reviewer II on manuscript “Report of the X-chromosome workshop.” ○ Evaluation from Reviewer I on manuscript “Report of the X-chromosome workshop.” ● Report: “Report of the X Chromosome Workshop.” Houston, TX. December 14-16, 1989. Cook-Deegan, Rossiter, Engel, Nelson, Caskey. (2 copies) ● Bibliography ● Report: “YAC Power.” Bertrand Jordan. (Jan. 26). ● Draft of meeting report: “Houston Large Fragment Cloning Workshop.” Dec. 12-14, 1989. ○ Memo: from Cook-Deegan to Tom Caskey. (20 Dec. 1989). Attached draft summary of large fragment cloning workshop. ● Draft: “Large Fragment Cloning Workshop Report,” page 14. (19 Dec. 1989). ● Letter: from C. Thomas Caskey to Cook-Deegan. (23 Jan. 1990). Genomics publication. ● Notes in notepad. ● Memo: from Cook-Deegan to Tom Caskey, David Nelson, Andrea Ballabio. (5 Jan. 1989). X Chromosome Workshop report.

Cook-Deegan Box 1/28

Houston Workshop, Dec. 1989 (3) ● Report: “Meeting solicited by NIH and DOE to be held before end of year.” ● Draft: “Yeast Artificial Chromosomes Containing Human DNA Inserts: Organization and Screening of Libraries.” Bernard H. Brownstein, Maynard V. Olson, David Schlessinger. ● Letter: from Cook-Deegan to Victor McKusick, Joanna Strayer, Kristina Brubaker. ( 20 Dec. 1989). Genomics Special Features. ○ Letter: from Cook-Deegan to Michal Cantwell. (27 Dec. 1989). Special issue on large fragment cloning. ● Copies of handwritten notes: Large Insert Cloning Workshop. (Dec. 12-14, 1989). ● Letter: from C. Thomas Caskey and David L. Nelson to workshop participants. (16 Oct. 1989). ○ Participant list ○ Letter: from C. Thomas Caskey to Cook-Deegan. (31 July 1989). Invitation to workshops. ○ Invitee list ○ Letter: from Cook-Deegan to Tom Caskey. (16 Nov. 1989). December Meetings. ● Airplane itinerary (16 Nov. 1989).

Houston Workshop, Dec. 1989 (4) ● Report: “Transfer of a yeast artificial chromosome carrying human DNA from Saccharomyces cervesiae into mammalian cells.” Vassilis Pachnis, Larysa Pevny, Rodney Rothstein, and Frank Costantini. ● Chart: step, technique, rationale, some alternatives ● Handwritten note: from Belinda, to Bob ● Notes on “Large Insert Cloning Workshop” (overview of sessions). Houston, Dec. 1989 ● Faxed letter: to Bob Cook-Deegan from Rakesh Anand. (Dec. 21, 1989) ● Laboratory Protocol: “In situ YAC Construction in Agarose.” T. Imai, T. Kai, F. Saka, T. Miwa, K. Yokoyama, E. Soeda. (Dec. 13, 1989). ● Protocol: Rapid Yeast Plug Prep Protocol. Tom Porter. (28 June 1989). ● Instruction Packet: Protocol for Picking YAC Clones. Jan Rossi, Jimmy Leung. (Dec. 2, 1989). ● Course Outline: “YAC cloning section: Cold Spring Harbor Cloning and Analysis Course Outline.” D. Burke. (4/3/89). ● Report: “Generating a 50,000 member human DNA library with an average DNA insert size of 75-100 KBP in a bacteriophage P1 cloning vector.” N. Sternberg, J. Ruether, and K. deRiel.

Houston Workshop, Dec. 1989 (5) ● Report: “A bacteriophage P1 cloning system for the isolation, amplification and recovery of DNA fragments as large as 100 KB.” Nat Sternberg. Cook-Deegan Box 1/28

● Report: “Preparation of Clone Libraries in Yeast Artificial Chromosome Vectors.” David T. Burke and Maynard V. Olson. ● Article: “Physical mapping of complex genomes.” D. Garza, J.W. Ajioka, J.P. Carulli, R.W. Jones, D.H. Johnson and D.L. Hartl. Nature vol. 340. (17 Aug. 1989). ○ Article (on back): “New tech in biotech.” Diane Gershon. Nature vol. 340. (17 Aug. 1989). ● Research article: “Mapping the Drosophila Genome with Yeast Artificial Chromosomes.” Dan Garza, James W. Ajioka, David T. Burke, Daniel L. Hartl. Science vol. 246. (3 Nov. 1989). ● Report: “Methods for cloning large DNA segments as artificial chromosomes in S. Cerevisiae.” Mary Kay McCormick, James H. Shero, Carla J. Connelly, Stylianos E. Antonarakis, Philip A. Hieter. ● Report: “Generation of deletion derivatives by targeted transformation of human-derived yeast artificial chromosomes.” William J. Pavan, Philip Hieter, and Roger H. Reeves. ● Draft of Report: “Report of the X Chromosome Workshop.” Robert Mullan Cook- Deegan. (14-16 Dec. 1989). ● Notes: “Guidelines for probe distribution within consortium.” ● Draft of Article: “Contiguous gene syndromes due to deletions in the distal short arm of the human X chromosome.” A. Ballabio, B. Bardoni, R. Carrozzo, G. Andria, D. Bick, L. Campbell, B. Hamel, M.A. Ferguson-Smith, G. Gimell, M. Fraccaro, P. Maraschio, O. Zuffardi, S. Guioli, and G. Camerino. (1989). ● Draft of Article: “Automated DNA sequencing of the human HRPT locus.” Al Edwards, Hartmut Voss, Peter Rice, Andrew Civitello, Josef Stegemann, Christian Schwager, Juergen Zimmermann, Holger Erfle, C. Thoma Caskey, and Wilhem Ansorget. ● Report: “Irradiation and Fusion Gene Transfer.” ● Report: “A transcribed gene in an intron of the will factor VIII Gene.” Barbara Levinson, Susan Kenwrick, Delia Lakich, Glenn Hammonds, and Jane Gitschier.

Houston Workshop, Dec. 1989 (6) ● Report: “A contiguous, 3-MB physical map of Xq28 extending from the color-blindness locus to DXS15.” Susan Kenwrick and Jane Gitschier. ● Copy of handwritten notes: “X-Chromosome Workshop.” (Dec. 14-16, 1989). ● Faxed letter: from Key E. Davies to Cook-Deegan. Diagram attached. (19 Dec. 1989). ● Chart: “X-Irradiation Data from Anglo-French Collaboration.” ● Diagram from Willard lab, Stanford Univ., Nov. 1989. ● Letter: from Gert-Jan B. van Ommen to Cook-Deegan. Diagram attached. (Dec. 1989). ● Report: “Systematic screening of yeast artificial-chromosome libraries using the polymerase chain reaction.” Eric D. Green and Maynard V. Olson. ● Report: “Alu polymerase chain reaction: A method for rapid isolation of human-specific sequences from complex DNA sources.” David L. Nelson, Susan A. Ledbetter, Laura Corbo, Maureen F. Victoria, Ramiro Ramirez-Solis, Thomas D. Webster, David H. Ledbetter, and C. Thomas Caskey. 1989. ● Report: “Direct cloning of human transcripts using hnRNA from hybrid cell lines.” Laura Corbo, David L. Nelson, and C. Thomas Caskey. ● Report: “Rapid Isolation of DNA Probes Within Specific Chromosome Regions by Interspersed Repetitive Sequence (IRS) PCR.” Susan A. Ledbetter, David L. Nelson, Stephen T. Warren, and David H. Ledbetter. Cook-Deegan Box 2/28

Portfolio: Valencia Workshop on International Cooperation for the Human Genome Project, Oct. 24-26, 1988 ● Folder: Workshop on International Cooperation for the Human Genome Project ○ Outline: “Some Ideas about the Possible Participation of Developing Countries in the Human Genome Project—The Case for Latin America.” International Biosciences Networks. ○ Menu: Workshop on the International Cooperation for the Human Genome Project ○ Outline: The Human Genome Organization (HUGO). Montreux, Switzerland—Sept. 7, 1988 ○ Photo ○ Outline: Valencia Declaration on the Human Genome Project ○ Outline: Valencia Declaration on the Human Genome Project (final conclusions) ○ Transparencies: outline, diagram ○ Invitation?: “Conferencia de cooperacion internacional para el proyecto sobre el genoma humano.” Valencia, 24-26 October, 1988. ● List with handwritten notes: “Partial list of persons invited to the human genome meeting.” 24-26 October, 1988. Valencia, Spain. ● Outline: Outline for Introduction ● List of names and addresses ● Handwritten notes ● Resume and Abstract: “Brief History of Yoji Ikawa, M.D. and Ph.D.” For Workshop on International Cooperation for the Human Genome Project, Oct. 24- 26, 1988, Spain. ● Resume and Abstract: “Curriculum Vitae.” Fumio Imamoto. For Workshop on International Cooperation for the Human Genome Project, Oct. 24-26, 1988, Spain. ● Draft of itinerary: “International Workshop on Present Status at Several National Levels and Proposal for International Cooperation on the Human Genome Project.” Oct. 24-26, 1988. Valencia, Spain. ● Outline: “Declaracion Valencia sobre el proyecto del genoma humano (conclusions finales).” ● Brochure: Workshop in International Cooperation for the Human Genome Project ● Resume: “Biographical Summary.” Andre Goffeau. ● Resume: “Curriculum vitae Lennart Philipson.” ● Resume: “Curriculum vitae.” David Schlessinger. ● List of names and addresses. “Europeos.” With handwritten notes. ● Article: “EEUU cooperará con otros países en el proyecto del genoma humano.” El pais. 25 Oct. 1988. ● Article: “Hoy, Valencia, capical cientifica del mundo” and “Hoy se inicia en Valencia el congreso sobre el genoma humano” (2 pages). Vicente Aupi. Hoja del lunes del Valencia. 24 Oct. 1988. nd ○ Article (2 on page): “La cupula de premios Nobel se reune por primera vez.” Vicente Aupi. Hoja del lunes del Valencia. 24 Oct. 1988. Cook-Deegan Box 2/28

● Article: “El proyecto Genoma es crucial para la comunidad cientifica.” Elena Rodrigo. 22 Oct. 1988. nd ○ Article (2 on page): “Al servicio de la ciencia.” Elena Rodrigo. 22 Oct. 1988. ● Article: “Lerma recibe la primera credencial del congreso del Genoma.” Las Provincias. ● Article: “El genoma humano” (continues on back). Pere Puigdomenech. El pais. 23 Oct. 1988. nd ○ Article (2 on page): “Reunion de alto nivel en Valencia.” M.R.E. El pais. 23 Oct. 1988. ● Bio: James Barnes Wyngarrden, MD. June 21, 1982. ○ Outline: “Highlights of Opening Remarks.” ○ Outline: “Highlights of Remarks.” ● Letter: to Santiago Grisolia from Cook-Deegan. 4 April 1988. ● Article (inside): “La genetica humana, una asignatura pendiente en Espana.” L.A.F.H. Las cosas de la vida. 30 Oct. 1988. nd ○ Article (2 on page): “Las patentes amenazan con ‘encarcelar’ el conomcimiento.” L.A.F.H. Las cosas de la vida. 30 Oct. 1988. ● Article (inside): “La esencia del ser” (continues on back page). Malen Ruiz de Elvira. El pais. 30 Oct. 1988. ○ Article (back page): “Clonar y secuenciar.” P.P. El pais. 30 Oct. 1988. ● Business card: Santiago Grisolia.

Cost Comments ● Memo: from Cook-Deegan to Genome Staff. Cost projections. 25 Sept. 1987. ● Letter: from Ray White to Cook-Deegan. Oct. 23, 1987. ● Letter: from Norman Whiteley to Jaqueline Courteau. Oct. 12, 1987. ○ Notes: “DNA sequencing using the model 370A versus traditional sequencing: cost of consumable materials and labor and comparison of time involved.” Feb. 10, 1987. ● Letter: from Robert E. Stenvenson to Cook-Deegan. Oct. 26, 1987. ● Letter: from David G. Baldwin to John Gibbons. Oct. 12, 1987. ● Letter: from Theodore T. Puck to Cook-Deegan. Oct. 26, 1987. ● Letter: from Stephen M. Mount to Cook-Deegan. Oct. 26, 1987. ● Letter: from Bob Williamson to Cook-Deegan. Oct. 12, 1987. ● Letter: from Bernard D. Davis to Cook-Deegan. Oct. 12, 1987. ● Letter: from George F. Cahill, Jr. to Cook-Deegan. Oct. 28, 1987. ● Letter: from Renato Dulbecco to Cook-Deegan. Oct. 14, 1987. ● Letter: from Francis H.C. Crick to Cook-Deegan. Oct. 5, 1987. ● Letter: from Margery W. Shaw to Cook-Deegan. Oct. 6, 1987. ● Letter: from Russell F. Doolittle to Cook-Deegan. Oct. 7, 1987. ● Letter: from John Sulston to Cook-Deegan. Oct. 13, 1987. ● Letter: from George M. Church to Cook-Deegan. Oct. 12, 1987. ● Letter: from Gilbert S. Omenn to Cook-Deegan. Oct. 13, 1987. ○ Letter: Cook-Deegan’s original letter, marked by Omenn. ● Letter: from D.J. Weatherall to Cook-Deegan. Oct. 12, 1987. Cook-Deegan Box 2/28

● Letter: from Robert Sinsheimer to Cook-Deegan. Oct. 21, 1987. ● Letter: from Howard. M. Temin to Cook-Deegan. Oct. 19, 1987. ● Letter: from Charles R. Cantor to Cook-Deegan. Oct. 20, 1987. ○ Second part of letter enclosed ● Letter: from Maynard V. Olson to Cook-Deegan. Oct. 21, 1987. ● Letter: from James E. Bowman to Cook-Deegan. Oct. 22, 1987. ● Letter: from Alan S. Rabson to Cook-Deegan. Oct. 7, 1987. ● Letter: from Robert Rabin to Cook-Deegan. Oct. 16, 1987. ● Letter: from Donald Fredrickson to Cook-Deegan. Oct. 4, 1987. ● Letter: from Duane Alexander to Cook-Deegan. Oct. 21, 1987. ● Letter: from Gerald Selzer to Cook-Deegan. Oct. 26, 1987. ● Letter: from Irving S. Johnson to Cook-Deegan. Nov. 9, 1987. ● Envelopes to letters (16) ● Handwritten note from Dave to Cook-Deegan. Oct. 21, 1987. ● Letter: to George F. Cahill. Sept. 29, 1987. ● Letter: from Paul Berg to Cook-Deegan. Oct. 15, 1987. ● Letter: from David A. Smith to Cook-Deegan. Oct. 29, 1987. ● Letter: from Donald A.B. Lindberg and Daniel R. Masys to Cook-Deegan. Oct. 15, 1987. ● Letter: from Anthony V. Carrano to Cook-Deegan. Oct. 20, 1987. ● Letter: from Anthony V. Carrano to Cook-Deegan. Aug. 20, 1987.

OTA collaboration workshop, April 1987 ● Letter: from James B. Wyngaarden to Cook-Deegan. Dec. 4, 1987. ● Letter: from David A. Smith to Cook-Deegan. Oct. 29, 1987. ● Report: “Discussion Guide: Issues of Collaboration for Human Genome Projects.” June 26, 1987. ● Handwritten notes.

NRC/NAS/IOM ● Outline: “Possible Topics for Mapping and Sequencing the Human Genome Discussion.” July 30, 1986. ● Notes: “Mapping and Sequencing the Human Genome.” Board on Basic Biology. CLS Meeting, Aug. 6-7, 1986. ● Memo: from Cook-Deegan to Bruce Alberts, John Burris, Francisco Ayala. “Academy” chapter draft. 9 March 1991. ● Letter: from John E. Burris to Cook-Deegan. Jan. 8, 1987. ● Letter: from Stephen A. Merrill to Congressional staff member. Feb. 3, 1988. ● Handwritten notes March 16, 1987 (2 copies). ● Handwritten notes on Office of Technology Assessment letterhead ○ Letter from Robert A Mathews to Cook-Deegan, September 19, 1986 ○ Robert Aldon Mathews resume ● Report: no title, about the genome ● Handwritten notes ● Report: “Board on Basic Biology: A Description.” December 8, 1986. ● Handwritten notes, 4/3/89. Cook-Deegan Box 2/28

● Memo: from John E. Burris to Members of the Board on Basic Biology. Agenda Book for August 5 Meeting at Woods Hole. July 18, 1986. ● Booklet: “Staff Orientation Booklet.” National Academy of Sciences, National Academy of Engineering, Institute of Medicine, National Research Council.

OTA memos ● Memo: from Cook-Deegan to Gretchen Kolsrud, Roger Herdman. Meeting with Barbara Mikulski. June 14, 1988. ● Memo: from Cook-Deegan to Wendy Harris. Mistakes in GPO edition of MAPPING OUR GENES to correct for JHUP edition. April 26, 1988. ● Memo: from Cook-Deegan to Bob Palmer. Information on genome projects. 20 June 1988. ● Memo: from John H. Gibbons to Technology Assessment Board. Transmittal of Draft Report on Mapping Our Genes. January 29, 1988. ○ Memo: from Cook-Deegan to John H. Gibbons. Review process for Mapping Our Genes. 25 January 1988. ○ List: OTA Advisory Panel on Mapping the Human Genome. ○ List: Issues of Collaboration for Human Genome Projects. 26 June 1987. ○ List: Workshop on Costs of Human Genome Projects. August 7, 1987. ● Memo: from Cook-Deegan to Stephen Keith. Addendum to 24 November memo re legislation on biotechnology and human genome. 25 November 1987. ● Memo: from Cook-Deegan to Tom Rollins, Mona Sarfaty, Steven Keith, Jerry Mande. Grants in bioethics. 25 September 1987. ● Handwritten notes. ● Memo: from Cook-Deegan to Genome Staff. Strategy for the genome project. 19 June 1987. ● Article: “Pushing Probes to Market.” Jennifer Van Brunt and Arthur Klausner. Bio/Technology vol. 5 num. 3, March 1987. ● Memo: from Cook-Deegan to Jack Gibbons, Mary Procter, Genome Staff. Panel and contracts for human genome project; revised. 27 October 1986. ● Memo: from Cook-Deegan to Jack Gibbons. Gene mapping proposal; parallel project at NAS. 28 August 1986. ● Memo: from Cook-Deegan to Jack Gibbons. NAS projects and OTA plans. 29 August 1986. ● Memo: from John H. Gibbons to Technology Assessment Board. Proposed Assessment of Mapping the Human Genome. ● Memo: from Patricia H. to Cook-Deegan. History of mapping/sequencing. November 6, 1986. ● Disc: Genome, ch. 1-3, appendices ● Disc: Genome, ch. 4-8, index, front matter ● Letter: from Edward M. Kennedy to John H. Gibbons. May 11, 1987. ● Testimony: Cook-Deegan before the Subcommittee on Oversight and Investigations. “Genome Projects: Issues Before Congress.” April 27, 1988. ● Press Release: Office of Technology Assessment. April 27. ● Memo: from Cook-Deegan to House Energy and Commerce; House Nat. Res. Subcom.; Senate Labor and HR; Ofc. Pete Domenici; Ofc. Lawton Chiles; Ofc. Cook-Deegan Box 2/28

Abert Gore, Jr.; OTA Genome Staff; OTA Management; Lesley Russel; George Kopp, Eileen Lee; Tom Rollins, Steven Keith, Mona Sarfaty; Paul Gilman, Denise Greenlaw; Rand Snell; Jerry Mande. Role of the OTA genome project in the first Congressional session. 20 August 1987. ● Memo: from Cook-Deegan to OTA Advisory Panel, Interested Congressional Staff, NRC Panel, People interviewed by OTA staff. Status of OTA project on mapping the human genome. 18 March 1987. ● Memo: from Cook-Deegan to Biotech staff, Gretchen Kolsrud, Roger Herdman, Tony Holtzman, Leslie Roberts. Attached notes about human gene mapping (if OTA does a project). 25 July 1986.

NIH responses to OTA ● Letter: from Duane Alexander to Cook-Deegan. August 20, 1987. ● Edited Report: “Chapter 5: Agencies and Organizations in the United States.” Cook-Deegan. July 1987. ● Memo: from Betty H. Pickett to Associate Director for Program Planning and Evaluation, OD/NIH. Chapter 5 of the Office of Technology Assessment’s Report on Mapping the Human Genome. August 20, 1987. ○ Edited Report: “Chapter 5: Agencies and Organizations in the United States.” Cook-Deegan. July 1987. ● Letter: from James B. Wyngaarden to Cook-Deegan. August 27, 1987. ● Letter: from Ruth L. Kirschstein to Cook-Deegan. August 10, 1987. ● Handwritten notes: Comments/Corrections, OTA Memo. Cook-Deegan.

OTA cost workshop, June 1987

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OTA letters ● Receipt form: “Mapping Our Genes: The Genome Projects, How Big, How Fast?” received from the OTA Publishing Office. ● Letter: from Peter Mombaerts to Cook-Deegan. July 31, 1988. ● Letter: from Cook-Deegan to Calestous Juma. 27 July 1988. ● Letter: from Calestous Juma to Cook-Deegan. July 4, 1988. ● Letter: from Cook-Deegan to Calestous Juma. 27 July 1988. ● Letter: from Cook-Deegan to Huntington F. Willard. 3 June 1988. ○ Letter: from Huntington F. Willard to Cook-Deegan. May 31, 1988. ● Letter: from David H. Guston to Cook-Deegan. January 20, 1987. ● Letter: from Patricia J. Hoben and Cook-Deegan to Horace Judson. June 5, 1987. ● Letter: from Cook-Deegan to David Holzman. 8 May 1987. ● Letter: from Cook-Deegan to Letters Editor of Insight. 8 May 1987. ● Letter: from Stuart H. Orkin to Cook-Deegan. April 22, 1987. ● Handwritten note: from Bill Loura(?)e to Ms. Oatman. 6/20. ● Letter: from Roger C. Herdman to Susan C. Rosenfeld. November 23, 1987. ○ Letter: from Susan Rosenfeld to Cook-Deegan. November 16, 1987. ● Letter: from Susan E. Cozzens to Cook-Deegan. April 8, 1987. ● Letter: from Alison C. Dineen to Cook-Deegan. 22 September 1988. ● Letter: from Cook-Deegan and Patricia J. Hoben to Vincent DeVita. January 22, 1987. ○ Letter: from Cook-Deegan and Patricia J. Hoben to George F. Cahill. January 22, 1987. ○ Letter: from Cook-Deegan and Patricia J. Hoben to Jay Moskowitz. January 22, 1987. ○ Letter: from Cook-Deegan and Patricia J. Hoben to William Raub. January 22, 1987. ○ Letter: from Cook-Deegan and Patricia J. Hoben to Jeremy Rifkin. January 22, 1987. ● Letter: from Cook-Deegan and Patricia J. Hoben to Mary E. Clutter. December 4, 1986. ○ Letter: from Cook-Deegan and Patricia J. Hoben to Ruth L. Kirschstein. December 4, 1986. ○ Letter: from Cook-Deegan and Patricia J. Hoben to David Kingsbury. December 4, 1986. ○ Letter: from Cook-Deegan and Patricia J. Hoben to Bruce Merrifield. December 4, 1986 (2 copies). ● Handwritten note: from Blair Burns Potter to Cook-Deegan. January 5, 1989. ● Letter: from Scott M. Zgraggen to Cook-Deegan. February 1, 1989. ● Letter: from Kevin M. Ulmer to Cook-Deegan. 16 December 1987. ● Letter: from Nancy C. Essig to Cook-Deegan. July 29, 1988. ○ Book listing for “Mapping Our Genes” ● Letter: from John D. Dingell to Cook-Deegan. May 10, 1988. ● Proposal: “Mapping/Sequencing the Human Genome.” National Research Council, Commission on Life Sciences, Board on Basic Biology.

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DOE responses to OTA ● Letter: from David A. Smith to Cook-Deegan. August 19, 1987. ● Letter: from Anthony V. Carrano to David H. Guston. August 19, 1987. ● Letter: from Anthony V. Carrano to Cook-Deegan. 10 June 1987.

OTA release ● Article: “Another report smiles on human genome sequencing project.” Carol Ezzell. Nature vol. 332. 28 April 1988 (3 copies). ● Royalty statement: “Mapping Our Genes.” December 31, 1988. ● Article: “Genome Projects Ready to Go.” Science vol. 240. 29 April 1988. ● Article: “Who will lead human genome project?” Elizabeth Ebbert. Nature vol. 333. 5 May 1988 (3 copies). ● Article: “US should avoid grand plan for gene mapping.” New Scientist. 28 April 1988. ● Article: “OTA Reports on Genome Research Management.” Bob Brewin. Federal Computer Week. May 9, 1988 (2 copies). ○ Article: “NIH, DOE Key In Genome Work.” Bob Brewin. Federal Computer Week. May 9, 1988 (2 copies). ● Article: “Critics Converge on Genome Project.” Jeffrey L. Fox. Bio/Technology. June 1988. ● Article: “Genetic R&D Coordination Backed by Congress Agency.” Chemical Marketing Reporter. May 9, 1988. ● Article: “Human genome project should be administered by an interagency task force, OTA report concludes.” The Blue Sheet. May 4, 1988. ● Article: “Federal task force urged on genetic research.” Robert Green. Reuter News Report. April 27, 1988. ● Report: “Human Genome Project: Interagency Task Force.” FDC Reports (The Pink Sheet). May 16, 1988. ● Article: “Congress explores genome mapping issues.” Nancy Bell. Bioscience. September 1988. ● Article: “Senate Passes Genome Bill.” Science Magazine. June 24, 1988. ● Article: “U.S. Dominates Publishing of Genome Mapping Articles.” Scientist. June 13, 1988. ● Article: “Several Gene Directors Are Better Than One.” Scientist. May 30, 1988. ● Book listing: “Mapping Our Genes.” Science Magazine. Sept. 16, 1988.

OTA trip reports ● Trip log/report: “Human Genome Projects in Formation: Report of a Trip to the American West; Interviews and Santa Fe II conference.” 3-22 January 1987. Cook-Deegan Box 3/28

OSTP ● Letter: from Cook-Deegan to D. Allan Bromley. 18 September 1989. ● Memo: from James B. Wyngaarden for the Committee on Life Sciences and Health. Meeting on March 27, 1990, Regarding the U.S.-Japan Science and Technology Agreement. March 21, 1990. ● Printed to-do list. September 13, 1989. ● Handwritten notes. ● Report: Proposals for New Cooperative Activities under S & T Agreement. April 26, 1989.

ASHG statement ● Report: Proposed ASHG Position on Mapping/Sequencing the Human Genome. Elizabeth M. Short. Am. J. Hum. Genet. 43: 101-102, 1988.

OMB ● Handwritten notes, Sept. 23, 1988. ● Proposal: “Biological and Environmental Research; Human Genome Project.” Dec. 18, 1986. ● Notes: Interview with Judy Bostock. Sept. 23, 1988. ● Notes: Interview with David Smith. 22 September 1988.

NRC study (release) ● Article: “Scientists Urge Huge Project To Chart All Human Genes.” Harold M. Schmeck, Jr. The New York Times. February 12, 1988. ● Article: “NAS Backs Mapping of Human Genome.” ASM News. April 1988. ● Report: “NewsReport.” National Research Council. Volume XXXVIII Number 3. March 1988. ● Article: “$3 Billion Gene Map.” Science Impact. March 1988. ● Article: “NAS Backs Gene Mapping” (pg. 3). The Original Physicians’ Washington Report. April 1988. ● Letter: from John E. Burris to invitee. February 3, 1988. ● Handwritten, faxed letter: from ? (Tokyo, Japan) to Cook-Deegan. August 29, 1989. ● Memo: from Cook-Deegan to Akihiro Yoshikawa. Genome projects. 29 August 1989. ● Memo: from Cook-Deegan to Akihiro Yoshikawa. I just made a bad mistake. 29 August 1989. ● Article: “Changes ahead for US policy on biotechnology regulations.” Nature. October 1987. ○ Article: “What future now for Japanese biotechnology research?” David Swinbanks. Nature. October 1987. ● Published letter: “OSTP’s Interest in Biology.” Robert Rabin. ASM News. August 1987. ● Article: “Welcome, Dr. Bromley.” Albert Gore, Jr. The AAAS Observer. 1 September 1989. ● Report: CIRRPC Second Annual Report. June 30, 1986. Cook-Deegan Box 3/28

Original White, Botstein, Wyman RFLP grant: U Mass Worcester to Utah with MIT subcontract. RO1GM27313 then RO1GM29789 ● Handwritten note. ● Letter: from Wanda Warddell to Cook-Deegan. September 28, 1990. ● Form: Research Grant form. Jan. 12, 1989. ● Report: Final Progress Report (for Grant Number 5R01GM29789-07). Jan. 1, 1981-Sept. 27, 1988. ● Form: Notice of Grant Award. September 23, 1988. ● Form: Notice of Grant Award. November 20, 1987. (2 copies—1 revised) ● Form: Notice of Grant Award. Nov. 26, 1986. (2 copies—1 revised) ● Form: Application for Continuation Grant. Nov. 3, 1986. ● Form: Summary of Proposed Work. ● Form: Protection of Human Subjects. July 20, 1987. ● Form: Protection of Human Subjects. Oct. 30, 1986. ● Letter: from Ursel Riggs to Grants Technical Specialist. 31 October 1986. ● Form: Notice of Grant Award. February 24, 1986. ● Form: Revised Application for Continuation Grant. Nov. 1985. ● Form: Protection of Human Subjects. Feb. 20, 1986. ● Letter: from Raymond L. White to Public Health Service. Feb. 17, 1986. ● Form: Summary of Proposed Work. ● Form: application for Continuation Grant. Oct. 31, 1985. ● Form: Notice of Grant Award. November 29, 1984. ● Letter: from Ursel L. Riggs to Division of Research Grants, National Institutes of Health. 31 October 1984. ● Form: Notice of Grant Award. November 17, 1983. ● Form: Application for Continuation Grant. October 25, 1983. ● Letter: from Ursel L. Riggs to Division of Research Grants, National Institutes of Health. 20 October 1983. ● Form: Notice of Grant Award. November 10, 1982. ● Form: Summary Statement. June 1982. ● Form: Summary Statement. June 1982. Revised Sept. 29, 1982. ● Form: Application for Continuation Grant. November 1, 1984. ● Form: Grant Application. February 1, 1982. ● Form: Notice of Grant Award. February 4, 1982. ● Form: Application for continuation Grant. November 1, 1984. ● Form: Notice of Grant Award. February 26, 1981. ● Form: Grant Application. October 1, 1980. ○ Letter: from Anthony R. Davis to Raymond White. September 18, 1980. Page 4a of application. ● Form: Official Statement Relinquishing Interests and Rights in a Public Health Service Research Grant. October 29, 1980. ● Form: Notice of Grant Award. December 27, 1979. ● Form: Grant Application. March 1, 1979. ● Letter: from Ursel Riggs to Susan Bettendorf. 12 January 1989. ● Letter: from Susan Bettendorf to Raymond L. White. November 4, 1988. ● Letter: from Ursel Riggs to Marcia Cohn. 29 July 1988. Cook-Deegan Box 3/28

● Form: Protection of Human Subjects. July 29, 1988. ● Letter: from Rebecca Carter and Ursel L. Riggs to Mark Guyer. March 11, 1988. ● Letter: from Ursel L. Riggs to Barbara Spinks. 12 November 1981. ● Letter: from Marcia F. Cohn to Raymond L. White. November 5, 1987. ● Letter: from Ursel L. Riggs and Raymond L. White to Fred Bergman. October 28, 1987. ● Letter: from Ursel Riggs to Marcia Cohn. 20 July 1987. ● Letter: from Ursel L. Riggs to Barbara Spinks. 17 June 1986. ● Letter: from Ursel L. Riggs to Office of Grants Management, National Institute of General Medical Sciences. 15 May 1984. ● Letter: from Barbara A. Spinks to Raymond L. White. March 23, 1984. ● Letter: from Ray White, Ursel Riggs, Robert Glass to Barbara Spinks. March 12, 1984. ● Letter: from Ursel L. Riggs to Barbara A. Spinks. 13 December 1983. ● Letter: from Ray White, D.F. Summers, Robert Glass, Ursel L. Riggs to Barbara Spinks. December 2, 1983. ● Letter: from Ray White and Ursel Riggs to Barbara Spinks. November 23, 1983. ● Letter: from Ursel L. Riggs to Beverly Meridith. 10 November 1983. ● Memo: from Director, Genetics Program. To Official File: 5 RO1 GM 29789-06, Raymond White. Unacceptable Type 5 Application. January 10, 1986. ● Letter: from Ursel L. Riggs to Office of Grants Management, National Institute of General Medical Sciences. 23 May 1983. ● Letter: from Ursel L. Riggs to Office of Grants Management, National Institute of General Medical Sciences. 16 November 1982. ● Letter: from Elke Jordan to Raymond L. White. October 20, 1982. ● Letter: from Ursel L. Riggs to Barbara Spinks. 13 September 1982. ● Letter: from Barbara Spinks to Raymond L. White. September 7, 1982. ● Letter: from Ray White to Barbara Spinks. June 29, 1982. ● Letter: from Ray White and Ursel L. Riggs to Barbara Spinks. August 19, 1982. ● Letter: from Ursel L. Riggs to Jan Montoyo. 26 April 1982. ● Letter: from Ursel L. Riggs to Office of Grants Management, National Institute of General Medical Sciences. 19 March 1982. ● Contract: Subcontract (Consortium). 1 January 1982 to 31 December 1982. ● Letter: from Ray White to Donna McNish. January 4, 1982. ● Letter: from Ursel L. Riggs to Anthony R. Davis. 9 December 1981. ● Letter: from Ursel L. Riggs to Division of Research Grants, National Institutes of Health. 28 October 1981. ● Report: from George W. Woolley to Ruth Kirschstein. August 25, 1981. ● Memo: from Program Administrator, Genetics Program, NIGMS. To Director, NIGMS. Highlight: A Highly Polymorphic Locus in Human DNA. May 8, 1981. ● Letter: from Barbara A. Spinks to Ursel L. Riggs. April 30, 1981. ● Letter: from Ursel L. Riggs to Public Health Service, Grants Management Office. 22 April 1981. ● Contract: 1 January 1981 to 31 December 1981. ● Form: Official Statement Relinquishing Interests and Rights in a Public Health Service Research Grant. October 29, 1980. ● Letter: from George B. Clark to Louise Berkovitch. December 30, 1980. Cook-Deegan Box 3/28

● Letter: from George B. Clark to Evelyn W. Carlin. December 26, 1980. ● Letter: from Ursel L. Riggs to George Woolley. 3 October 1980. ● Letter: from George B. Clark, David Botstein, Raymond L. White to George Wooley. October 28, 1980. ● List: Equipment to be purchased ● Letter: from Raymond L. White to George W. Woolley. September 8, 1980. ● Report: from George W. Woolley to Ruth Kirschstein. July 7, 1980. ● Form: Summary Statement. June 1979.

Tracy Friedman thesis; Princeton, BA, May 1990 ● Handwritten note from Tracy Friedman. ● Letter: from Tracy L. Friedman to Cook-Deegan. October 25, 1990. ● Report: The Science and Politics of the Human Genome Project. Tracy L. Friedman. Senior Thesis. April 6, 1990.

U.S. Constitution and its science authority ● United States Constitution

General science policy ● Book review: “Thinkers Remobilized.” Science vol. 24. 10 June 1988. Herbert F. York. ○ Book review: “The Decline of Enlightenment.” Science vol. 24. 10 June 1988. Neil Harris. ● Book excerpt: “How to Save the Ship.” Paul R. Ehrlich. From The Population Bomb. 1968. ● Article: “The correlates of research success.” David C. Evered, Joe Anderson, Patricia Griggs, Richard Wakeford. British Medical Journal vol. 295. 25 July 1987. ● Article: “The Research University: Doing Good, and Doing It Better.” Harvey Brooks. Issues in Science and Technology Winter 1988. ● Article: “Science in 2006.” Lewis M. Branscomb. American Scientist, vol. 74. November-December 1986. ● Book excerpt: Population Evolution and Birth Control: A Collage of Controversial Ideas. Assembled by Garrett Hardin. ● Article: “Biomedical Miscommunication in the AIDS Crisis.” Sandra Panem. ● Article: “Are we losing the war on cancer?” Marie M. Cohen and Jared M. Diamond. Nature vol. 323. 9 October 1986. ● Article: “New research machinery needed.” Nature vol. 328. 16 July 1987. ● Article: “The Space Shuttle Program: A Policy Failure?” John M. Logsdon. Science vol. 232. 30 May 1986. ● Article: “Physicists about to hi-jack DNA?” John Maddox. Nature vol. 324. November 1986. ● Article: “That’s Politics.” Carol Matlack. National Journal. June 11, 1988. ● Article: “Deciding where the money goes.” Nature vol. 329. 15 October 1987.

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Big science ● Notes: Interview with Daniel Kevles. July 20, 1988. ● Article: “Big-Ticket Science Research Is Pinching U.S. Projects, Harming Smaller Efforts.” Kim McDonald. The Chronicle of Higher Education. February 18, 1987. ● Article: “Science and the Party Platforms.” Gregory Byrne. Science vol. 241. 2 September 1988. ○ Article: “Advice on a Science Advisor.” Colin Norman. ○ Article: “The SCC and the Environment.” Colin Norman. ● Article: “To Make the Big Time of Science, Better Take Your Show on the Road.” Gina Kolata. The New York Times: Science Times. January 2, 1990. ● Article: “Money, science, and the SSC.” Rep. Sherwood L. Boehlert. C&EN January 4, 1988. ● Draft: “‘Genome’ Commentary.” 20 Dec. 1988. (2 pages.) ● Form: Request for Information. 29 July 1987. ● Article: “Is Science Too Big.” Saturday Review. June 6, 1959. ○ Article: “For the Scientist?” Merle A. Tuve. ■ Article: “Their Own Worst Enemies.” Lee A. DuBridge. ■ Article: “The Tendency of the Group Is to Be Conservative.” Alan T. Waterman. ○ Article: “Science: The Megabuck Era.” Norbert Wiener. The New Republic. January 27, 1958. ● Article: “Impact of Large-Scale Science on the United States.” Alvin M. Weinberg. Science vol. 134. 21 July 1961. ● Article: “New research machinery needed.” Nature vol. 328. 16 July 1987.

Science priorities; Frank Press speech and other ● List: “Charge to the Academy Complex for the Study.” ● Draft: “An International Interview Round on the Use and Development of Science and Technology Indicators.” June 1988. ● Article: “Press tells it nearly like it is.” Nature vol. 333. 5 May 1988. ● Article: “Two Leaders Challenge the ‘Big Science’ Trend.” Philip M. Boffey. The New York Times: Science Times. May 3, 1988. ● Report: “The Dilemma of the Golden Age.” Frank Press. Address to Members, 125th Annual Meeting of the National Academy of Sciences. April 26, 1988.

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Research funding ● Article: “Jim Watson on the Budget.” Barbara J. Culliton. Science vol. 242. ● Article: “Governments Led in Funding 1989-90 ‘Hot Papers’ Research.” Angela Martello. The Scientist. August 20, 1990. ● Article: “‘Earmarking’ at DOE, DOD Rolls On.” Mark Crawford. Science vol. 239. 22 January 1988. ● Article: “Research and the ‘Flexible Freeze.’” Eliot Marshall. Science vol. 242. 9 December 1988. ● Article: “Science and the Lame-Duck Budget.” Colin Norman. Science vol. 243. 13 January 1989. ○ Article: “New Hands on the Purse Strings.” William Booth, Mark Crawford, Marjorie Sun. ● Article: “Agencies anxious as US Congress fixes deadline for 1988 budget.” Joseph Palca. Nature vol. 329. 22 October 1987. ● Article: “R&D Budget Faces High Hurdles.” Mark Crawford. Science vol. 239. 26 February 1988. ● Article: “Deciding where the money goes.” Nature vol. 329. 15 October 1987. ● Article: “US budget does well by big science in 1989 proposal to Congress.” Nature vol. 331. 25 February 1988. ● Article: “Dukakis, Bush Duel on Science-Policy Promises as Scientists Fret Over Funding, Focus of Research. Bob Davis and David Rogers. The Wall Street Journal August 9, 1988. ● Report: “Health Care Innovation: A Progress Report.” J. Leighton read and Paul M. Campbell. DataWatch: Health Affairs. Summer 1988. ● Report: “Investment in Health Care Innovation.” Michael R. Pollard and Gary S. Persinger. DataWatch: Health Affairs. Summer 1987. ● Report: “Biomedical Research and Technology Development.” Gerard F. Anderson and Catherine M. Russe. Commentary: Health Affairs. Summer 1987. ● Report: “Research and Development Funding: FY89.” Updated July 25, 1988. CRS Issue Brief. ● Report: “National Medical Care Spending.” Gerard F. Anderson and Jane E. Erickson. DataWatch: Health Affairs. Fall 1987. Cook-Deegan Box 4/28

No Folder ● Letter: from Lauren Seeley to Cook-Deegan. May 12, 1987. ● Letter: from David H. Curtis to Cook-Deegan. ● Letter: from Jon Palfreman to Cook-Deegan. 26 October 1988. ● Letter: from Jon Palfreman to Cook-Deegan. 20 December 1988. ○ Transcript: “Genome” Commentary. 20 December 1988. ● Letter: from Geoffrey Little to Cook-Deegan. 20 may 1988.

1987-88 BBC/NOVA Documentary ● WGBH Brochure. ● Proposal: “Life: Cracking the Code. An Eight Part Television Series.” ● Memo: from Cook-Deegan to John Palfreman. Your 23 January FAX message. 25 January 1989. ○ Letter: from Jon Palfreman to Cook-Deegan. 23 January 1989.

U.Md. Lecture on Genome 2/89 ● Flyer: University of Maryland Lecture Series, Spring, 1989. Historical and Philosophical Issues in Biotechnology. February 16, Bob Cook-Deegan. “Science and Politics of the Human Genome.” ● Outline: Presentation for University of Maryland. February 16, 1989. ● Memo: from Cook-Deegan to Lindley Darden. Abstract for Feb. 16 talk. 31 January 1989. ● Letter: from Lindley Darden to Cook-Deegan. January 5, 1989.

AMA Resolution ● Memo: from Cook-Deegan to Jim Watson, Elke Jordan, Mark Guyer, Pam Lokken, Jane Peterson. AMA resolution. 9 August 1990. ● Letter: from Peter P. Toth to Cook-Deegan. 4 July 1990. ○ Letter: from Peter P. Toth to James D. Watson. 21 April 1990. ○ Resolution: Sharing the Financial and Manpower Burden of the Human Genome Project with other Nations. Submitted by Peter P. Toth.

Salk Talk ● Brochure: Faculty Brochure, The Salk Institute for Biological Studies. ● Brochure: Profile of a Unique Research Center, Salk Institute for Biological Studies. ● Printed Program: The Human Genome Project: Ethical and Social Issues. The Salk Institute for Biological Studies. December 17, 1990. ● Booklet: Publications List. 1989. The Salk Institute for Biological Studies. ● Letter: from Renato Dulbecco to Cook-Deegan. August 8, 1990. ● Letter: from Kenneth A. Klivington to Cook-Deegan. November 14, 1990. ● Letter: from Renato Dulbecco to Cook-Deegan. August 29, 1990. ● Outlined Program: The Human Genome Project: Ethical and Social Issues. The Salk Institute for Biological Studies. December 17, 1990. ● Outline: Legal Issues. A.M. Capron. The Human Genome Project: Ethical and Social Issues. December 17, 1990. Cook-Deegan Box 4/28

● Outline: Ethical and Social Implications of Human Genome Research. Eric T. Juengst. ● Memo: from Cook-Deegan to Kenneth Klivington. Outline for talk at Salk Institute, 17 December. 30 October 1990. ○ Outline: for Talk at Salk Institute, 17 December 1990. ○ Outline: Ethical and Social Implications of Human Genome Research. Eric T. Juengst. ○ Notes: The Shadow of Eugenics; Social Issues Arising from the Human Genome Initiative. Dan Kevles. Note for Talk at Salk. ○ Letter: from Eric S. Lander to Renato Dulbecco. October 30, 1990. ○ Letter: from Dorothy Nelkin to Renato Dulbecco. August 29, 1990.

NIH organizational mtg. 3-4 January 1989 ● Report: Program Advisory Committee on the Human Genome. January 3-4, 1989. Includes: ○ Table of Contents ○ Report: NSF Activities on Chromosome Mapping and Sequencing ○ Charter: Program Advisory Committee on the Human Genome ○ Report: Office of Human Genome Research Administrative Plan ○ Memorandum of Understanding between the United States Department of Energy and the National Institute of Health ○ Roster: Program Advisory Committee on the Human Genome ○ Report: Genome Grants Paid in FY88 ○ Agenda: Program Advisory Committee on the Human Genome ○ Handwritten notes. January 3, 1989.

UCLA December 1988, First meeting with Watson for NIH and Cantor for DOE ● Brochure: University of California Biotechnology: Research and Education Program. ● List: Speakers and Panelists, UCLA. December 1988. ● Letter: from Susanne L. Huttner to Cook-Deegan. November 7, 1988. ● Preliminary Agenda: The Human Genome Projects: Issues, Goals, and California Participation. December 2, 1988. ● Letter: from Paul D. Boyer to Cook-Deegan. October 21, 1988. ● Formal Agenda: The Genome Projects: Issues, Goals, & California’s Participation. ● Agenda: The Human Genome Projects: Issues, Goals, & California’s Participation. ● Handwritten notes. ● Letter: from Paul D. Boyer to Cook-Deegan. December 9, 1988. ● Rental car receipt and airline ticket.

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BC-D Presentations ● Letter: from Carolyn H. Asbury to Cook-Deegan. October 20, 1989. ● Receipt: Amtrak train ticket. 16 November 1989. ● Letter: from Bruce J. Bellande to Cook-Deegan. December 26, 1989. ○ Evaluation: Southern Medical Association Fifth President’s Symposium “The Impact of Genetics and Biotechnology on Medicine.” ○ Letter: from Bruce J. Bellande to Cook-Deegan. October 9, 1989. ○ Schedule/Agenda: Fifth Annual President’s Symposium “The Impact of Genetics and Biotechnology on Medicine.” November 8, 1989. ● Handwritten notes. ● Letter: from Bruce J. Bellande to Cook-Deegan. April 11, 1989. ● Letter: from Bruce J. Bellande to Cook-Deegan. June 13, 1989. rd ● Brochure/Program: Southern Medical Association 83 Annual Scientific Assembly. November 5-8, 1989. Washington Convention Center. ● Letter: from Patricia Powers to Cook-Deegan. ○ Preliminary Agenda: Seminar on the Measurement of Cognitive Impairment. December 11, 1989. ○ Expense statement. December 11, 1989. ● Letter: from Joan Rachlin to Cook-Deegan. December 1, 1989. ● Letter: from Joan Rachlin to Cook-Deegan. October 16, 1989. ○ Information Sheet for Panelists ○ Workshop Information Sheet ● Handwritten notes. ● Notes: Information for Speakers. The Senior Seminar: Foreign Service Institute. September 5, 1989-June 8, 1990. ○ Report: Curriculum Concept Paper. The Senior Seminar: Foreign Service Institute. September 5-June 8, 1990. ○ List: Roster of Membership. The Senior Seminar: Foreign Service Institute. September 5-June 8, 1990. ● Letter: from Cook-Deegan to Gail Gulliksen. October 18, 1989. ● Letter: from Ambassador William Bodde to Cook-Deegan. October 25, 1989. ● Letter: from Douglas A. Ramsey to Cook-Deegan. October 27, 1989. ○ Letter: from Sandy Blakeslee to Cook-Deegan. 4 December 1989. ○ Letter: from Sandy Blakeslee to Cook-Deegan. 28 October 1989. ○ Agenda: The New Genetics and the Right to Privacy: A Conference for Journalists. November 30, 1989. ○ Letter: from Sandy Blakeslee to Cook-Deegan. 5 June 1989. ○ Letter: from Douglas A. Ramsey to journalists. June 5, 1989. ○ Letter: from Sandy Blakeslee to Cook-Deegan. 30 March 1989. ● Notes: Important Concepts for Second Sunday Forum on Novel Ethical Issues Associated with Progress in Genetics. ● Schedule: Bradley Hills Seminar. Human Implications for Genetic Engineering. October 15-november 19, 1989. ○ Letter: from Thomas Ward to Cook-Deegan. August 23, 1989. ○ Notice: Bradley Hills Presents: Human Implications for Genetic Engineering—An Adult Education Seminar. Cook-Deegan Box 4/28

● Letter: from Everett Mendelsohn to Cook-Deegan. September 28, 1989. ● Letter: from Evelyn Simha to Cook-Deegan. December 19, 1989. ● Letter: from Daniel J. Kevles to Cook-Deegan. September 26, 1989. ● Outline: Presentation for California Institute of Technology. Pasadena, CA. 1 November 1989. ● Schedule: Genome Mapping and Gene Therapy. ○ Letter: from William T. Bluhm to Cook-Deegan. January 13, 1989. ○ Letter: from William T. Bluhm to Cook-Deegan. December 21, 1988. ○ Letter: from Cook-Deegan to William T. Bluhm. 10 January (1989?) ○ Curriculum Vitae: Cook-Deegan. ○ Letter: from William T. Bluhm to Cook-Deegan. March 29, 1989. ● Brochure: Unlocking Potential: The Promise of the Human Genome Initiative. April 24 and 25, 1989. ● Memo: from Cook-Deegan to Paul Kelly. Expenses for 5 April seminar and lunch talk at the University of Rochester. 12 April 1989. ● Letter: from Paul E. Kelly to Cook-Deegan. April 5, 1989. ● Letter: from Brakelmann to Cook-Deegan. December 15, 1989. ● Letter: in German. To Cook-Deegan? November 6, 1989. ● Letter: from Barry D. Gold to Cook-Deegan. April 14, 1989. ○ Report: AAAS/ABA National Conference of Lawyers and Scientists. ○ Summary: Genome Grants Paid in FY88. ○ Report: AAAS/ABA National Conference of Lawyers and Scientists Project on Fraud and Misconduct in Science. ○ Outline: Emerging Issues in Genetics and the Law. May 20, 1989. ● Letter: from A. Stephen Dahms to Cook-Deegan. May 8, 1989. ○ Letter: from A. Stephen Dahms to Cook-Deegan. May 23, 1989. ○ Report: California State University Program for Education and Research in Biotechnology (CSUPERB). ○ Report: from Steve Dahms to CSUPERB Governing Board Members. ○ Article: “SDSU prepares for challenges of growing biotechnology industry.” The San Diego Union. November 14, 1988. ○ Article: “UCSD, SDSU drive ‘Bio-Med Boulevard.’” The San Diego Tribune. January 29, 1988. ○ Article: CSU System Instituting New Program for Biotechnologists. The Daily Aztec. August 30, 1988. ○ Article: “Molecular Biology Institute.” SDSU Sciences Review. September 1988. ○ Article: “Molecular Biology Institute: CSU Program for Education and Research in Biotechnology.” SDSU Sciences Review. January 1988. ○ List: CSUPERB Governing Board. May 22, 1989. ○ Agenda: Second Annual CSU Biotechnology Symposium and Conference. June 2 and 3, 1989. ○ Map: Kellogg West. ● Letter: from Pat Reinsfelder to Robert E. Stevenson. June 27, 1989. ● Letter: from Robert Stevenson to Cook-Deegan. June 16, 1989. Cook-Deegan Box 4/28

● Memo: from Cook-Deegan to Bob Stevenson. Orlando symposium. 12 July 1989. ● Brochure: American Association of Tissue Banks. ● Handwritten notes. ● Note: CV addition for R. Alta Charo (as of August 1989). ● Outline: Future Issues in Research Ethics. September 19, 1989. ○ Memo: from Cook-Deegan to Levi C. Carter. Outline for next week’s talk. 11 September 1989. ○ Letter: from Levi C. Carter to Cook-Deegan. August 25, 1989. ○ Agenda (draft): Monday, September 18, 1989. ○ List of Faculty (draft): workshop on “Ethical Issues in Biomedical and Behavioral Research.” September 18-19, 1989. ● Memo: from John C. Moskop to Cook-Deegan. Society for Health and Human Values Workshop on the Congressional Bioethics Board and Advisory Committee. October 11, 1989. ○ Memo: from Carol Ann Kiner to SHHV Annual Meeting Participants. Annual Meeting Programs and Arrangements. 1 August 1989. ○ Program: Society for Health and Human Values Annual Meeting Program. October 26-29, 1989. ○ Application: Society for Health and Human Values Membership Application ○ Letter: from John C. Moskop to Cook-Deegan. May 8, 1989. ○ Letter: from Eric T. Juengst to Cook-Deegan. March 15, 1989. ● Letter: from Thor S. Johansen to Cook-Deegan. August 17, 1990. ○ Letter: from Leif Westgaard to Cook-Deegan. Visit of the Committee on Health and Social Affairs of the Norwegian Parliament, 7 September 1990. August 9, 1990. ● Letter: from Carolyn W. Hunt to Cook-Deegan. June 29, 1990. th ● Notice: 12 Annual Vahl Memorial Lecture: Advances in Human Genetics: Where Are We Going? September 13, 1990. ● Letter: from Cook-Deegan to Carolyn W. Hunt. 6 July 1990. ● Letter: from Sidney H. Sobel to Cook-Deegan. April 4, 1990. ● Letter: from Cook-Deegan to Sidney H. Sobel. 22 April 1990. ● Memo: from Cook-Deegan. Marianne Stanchus. Sept. 13 schedule. 7 September 1990. ● Letter: from Marianne to Cook-Deegan. September 7, 1990. ● Airline ticket booklet: September 11, 1989. ● Reservation summary: plane ticket. August 31, 1990. ● Letter: from Todd M. Jenson to Cook-Deegan. 1 August 1990. ● Letter: from Cook-Deegan to Todd Jenson. 9 August 1990. ● Letter: from Eric Woolf to Cook-Deegan. 18 May 1990. ● Letter: from Cook-Deegan to Eric Woolf. 28 April 1990. ● Letter: from Eric Woolf to Cook-Deegan. 26 April 1990. ● Letter: from Cook-Deegan to Eric Woolf. 22 April 1990. ● Letter: from Eric Woolf to Cook-Deegan. 23 March 1990. ● Letter: from Eric Woolf to Cook-Deegan. 16 April 1990. Cook-Deegan Box 4/28

● Letter: from Eric Woolf to Cook-Deegan. February 28, 1990. ● Letter: from Cook-Deegan to Eric Woolf. 5 March 1990. ● Letter: from Karen Rothenberg to Cook-Deegan. December 5, 1990. ● Newsletter: Academic Health Centers. November 1990. ● Brochure: Baccalaureate Forum, Hobart and William Smith Colleges. Winter term 1991. ○ Letter: from Elizabeth A. Newell to Cook-Deegan. 12 March 1991. ○ Letter: from Elizabeth Newell to Cook-Deegan. 2 January 1991. ○ Letter: from Elizabeth A. Newell to Cook-Deegan. 13 October 1990. ○ Brochure: Hobart and William Smith Colleges Admission Catalogue. 1988-1990. ○ Brochure: Baccalaureate Forums, Hobart and William Smith Colleges. Winter term 1990. ○ Syllabus: Science, Scientists, and Society. Professors Ahrnsbrak, Hill, and Newell. Winter 1991. ● Brochure: University of Maryland Law & Health Care Program and The Center for Public Issues in Biotechnology. Panel Discussion on Understanding the New Issues in Genetics. Part I: Mapping the Human Genome. November 20, 1990. (3 copies) ○ Letter: from Nancy A. Zibron to Cook-Deegan. October 24, 1990. ○ Letter: from Karen H. Rothenberg to Cook-Deegan. October 1, 1990. ○ Memo: from Cook-Deegan to Nancy Wexler. Talks at U Maryland, Nov. 20. 17 September 1990. ○ Flyer: Mapping the Human Genome. November 20, 1990. ○ Report: Human Genome Project Progress: Backgrounder. NCHGR Bioethics Program Addresses Social and Ethical Implications of Knowledge About Human Genes. November 1990. ○ Outline: Science and Politics of the Human Genome. ○ Outline: Outline for Talk at Salk Institute, 17 December 1990. October 30, 1990. ○ Article: “In the shadow of Huntington’s disease Nancy Wexler’s Quest for a Cure.” Marion Steinmann. Columbia. ○ Selected Bibliography: Mapping the Human Genome. Law & Health Care Program, University of Maryland School of Law. November 20, 1990. ○ Letter: from C. Thomas Caskey to ASHG member. October 30, 1990. ● Program: The Charles L. Lippoldt, M.D. Symposium in Bioethics. Human Genome Project. April 10, 1990. ○ Memo: from Cook-Deegan to Gina Giovinco. Lippoldt lecture expenses. 13 April 1990. ○ Brochure: The Writing Center, Rollins College. ○ Letter: from Richard Wetherill to Cook-Deegan. November 22, 1989. ○ Schedule: Second Annual Charles L. Loppoldt, M.D., Memorial Symposium in Bioethics. April 11, 1990. ○ Letter: from John G. Heiland to Cook-Deegan. ○ Letter of contract: Cook-Deegan, John G. Heiland, L.L. Ellis. November 20, 1989. Cook-Deegan Box 4/28

HGM-7, Los Angeles, 1983 ● Report: Human Gene Mapping 7. Los Angeles Conference (1983), Seventh International Workshop on Human Gene Mapping. HGM-9, Paris, September 1987 ● Report: The Determination of the Gene Defect Causing Cystic Fibrosis. R. Williamson. ○ Report: Genomic Organization and Developmental Expression of Mammalian Homeobox Genes. Frank H. Ruddle. ○ Report: Gene Families and Superfamilies. Bertrand R. Jordan. ○ Report: Human Polymorphism Study Center. Jean Dausset. ● Booklet: Instructions for Submission of Abstracts. HGM9 Paris. ● Summary: Human Gene Mapping Conference Reports. ● Booklet: Ninth International Workshop on Human Gene Mapping. HGM9 Paris. 6-11 September 1987. ● Letter: from Jean Frezal to colleague. February 10, 1987. ● Advertisement: International Meeting on the Molecular Mapping of the Mouse Genome. Paris, September 7-10, 1987. ● Form: Pre-Registration Form. HGM9 Paris. (other forms attached) ● Letter: from Marie Siniscalchi to Cook-Deegan. May 1, 1987. ○ Letter: from Jean Frezal to colleague. February 10, 1987. ● Folder: International Conference on New Genetics and the Human Gene Map. HGM9 Paris. September 11-12, 1987. ○ Report: New Genetics and the Human Gene Map. Jean Frezal. (2 copies) ○ Report: Abnormal Sex Determination in Man. Albert de la Chapelle. ● Folder: International Conference on New Genetics and the Human Gene Map. HGM 9 Paris. September 11-12, 1987. ○ Program: Conference Internationale. Paris, 11-12 September 1987. ■ Handwritten notes. ○ Tables: Comparative Report. ○ Tables: tablet. September 1, 1987. ○ Report: The Determination of the Gene Defect Causing Cystic Fibrosis. R. Williamson. ■ Report: Genomic Organization and Developmental Expression of Mammalian Homeobox Genes. Frank H. Ruddle. ■ Report: Gene Families and Superfamilies. Bertrand R. Jordan. ■ Report: Human Polymorphism Study Center. Jean Dausset. ○ Handwritten notes. ○ Report: Abnormal Sex Determination in Man. Albert de la Chapelle. ○ Letter: from Nicole Frezal to Cook-Deegan. Certificate of Attendance. September 12, 1987. ● Handwritten notes. ● Memo: from Cook-Deegan to Genome Staff. Paris Trip Report. 16 September 1987. Tribal organization on Hill ● Book excerpt: Tribes on the Hill. J. McIver Weatherford.

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Folder: Northeastern Ohio Universities College of Medicine ● Program: Proceed with Caution: The Bioethics of Human Genetic Engineering. October 6, 1990. ● Handwritten notes. ● Outline: Advances in Human Genetics: Public Policy Implications. ● Handwritten notes. th ● Outline: Ethics in Medicine. 4 International Congress on Ethics in Medicine. October 13-18, 1991. ● Report: Choice, Disclosure, and Informed Consent. Dorothy C. Wertz. ● Outline: Advances in Human Genetics: Public Policy Implications. September 17, 1990. ○ Memo: from Cook-Deegan to Wilson Ray Huhn. Travel arrangements for 6 October conference. 17 September 1990. ○ Letter: from Wilson Ray Huhn to Cook-Deegan. August 31, 1990. ○ Letter: from Wilson Ray Huhn to Cook-Deegan. January 5, 1990. ○ Schedule: The Bioethics of Genetic Engineering with Human Beings. October 6, 1990. Northeastern Ohio universities College of Medicine. List of Speakers attached. ○ Letter: from Wilson Ray Huhn to Cook-Deegan. June 1, 1990. ○ Letter: from Wilson Ray Huhn to Cook-Deegan. April 5, 1990. ○ Letter: from Cook-Deegan to Wilson Ray Huhn. 22 April 1990. ● Certificate: Cook-Deegan awarded Category I credit hours for participation in Genetic Engineering of Human Beings: Ethical and Legal Considerations. October 6, 1990. ● Brochure: Proceed with Caution…The Bioethics of Human Genetic Engineering. October 6, 1990. ● Article: “Proceed with Caution: The Bioethics of Human Genetic Engineering.” Profiles: Human Values in Medicine. Fall 1990. ● Form: Human Values in Medicine Evaluation Form. ● Form: Evaluation Form: The Bioethics of Human Genetic Engineering. October 6, 1990.

Folder: Association of Academic Health Centers st ● Program: Preparing for Science in the 21 Century. October 3-6, 1990. ● List: Association of Academic Health Centers 1990 Annual Meeting. Naples, Florida. ● Form: Publications Order Form. Association of Academic Health Centers. Cook-Deegan Box 5/28

Red Sun Rising: Japan begins automation of DNA sequencing; Wada as the Bridge, Soeda, STA enters

● Brochure: Zentrum für Medizinische Ethik. The Japanese Human Genome Analysis Project: Background, Policy, and Problems. September 1989. ● Letter: from Akihiro Yoshikawa to Cook-Deegan. August 5, 1988. ● Article: “Human Frontier.” By M.S. Science vol. 241. ● Article: “Japanese AIDS scandal over trials and marketing of coagulants.” David Swinbanks. Nature vol. 331. 18 February 1988. ● Article: “Human Frontiers Program seeks international help.” David Swinbanks. Nature vol. 330. 24/31 December 1987. ● Article: “Japan’s Human Frontiers project stays in the doldrums.” David Swinbanks. Nature vol. 328. 9 July 1987. ● Article: “Changes ahead for US policy on biotechnology regulations.” Joseph Palca. Nature vol. 329. 22 October 1987. ○ Article: “What future now for Japanese biotechnology research?” David Swinbanks. Nature vol. 329. 22 October 1987. ● Note: Akiyoshi Wada. ● Article: Which way to the frontier?” The Economist. May 26, 1988. ● Draft: “Genome” Commentary. 20 December 1988. (3 pages) ● Letter: from David A. Smith to Cook-Deegan. November 25, 1986. ○ Report: Strategy for Building an Automatic and High Speed DNA-Sequencing System. Akiyoshi Wada and Eiichi Soeda. ● Article: “Quest for Genome Could Begin Here.” Washington Technology. July 9, 1987. ● Diagrams and tables. Red Sun Risen: The Human Science policy frontier; MITI, STA, Monbusho embattled; companies call…Wada becomes a diplomat, gets thrust aside; …Matsubara, Kanehisa, Honjo enter the fray; …1987-present.

● Brochure: Zentrum für Medizinische Ethik. The Japanese Human Genome Analysis Project: Background, Policy, and Problems. September 1989. ● Article: Japan’s Human Frontiers Program Advances.” David Dickson. Science vol. 241. 1 July 1988. ○ Article: “U.S.-Japan Science Pact Signed.” Marjorie Sun. Science vol. 241. 1 July 1988. ● Article: “Japan’s frontiers research to cross international boundaries.” David Swinbanks. Nature vol. 332. 10 March 1988. ● Article: “US pressures Japan over imbalance in basic research.” Alun Anderson. Nature vol. 329. 22 October 1987. ● Article: “Human Frontiers Program seeks international help.” David Swinbanks. Nature vol. 330. 24/31 December 1987. ● Article: “Japan’s Human Frontiers project stays in the doldrums.” David Swinbanks. Nature vol. 328. 9 July 1987. ● Article: “Changes ahead for US policy on biotechnology regulations.” Joseph Palca. Nature vol. 329. 22 October 1987. ○ Article: “What future now for Japanese biotechnology research?” David Swinbanks. Nature vol. 329. 22 October 1987. Cook-Deegan Box 5/28

● Article: Which way to the frontier?” The Economist. May 26, 1988. ● Article: “The Harmony Fellowships.” Ronald E. Cape. Bio/Technology vol. 6. February 1988. ○ Article: “A Fellowship for U.S.-Japanese Harmony.” Ronald E. Cape. The Scientist. January 11, 1988. ○ Article: “The Cape of Good Hope.” Growth Strategies. February 1988. ○ Article: “Bilateral Cooperation Key to Biotechnology.” Anthony L. Greco. Economic World. February 1988. ○ Letter: from Ronald E. Cape to David Rockefeller. January 25, 1988. ● Report: “The Growth of Japanese Science and Technology.” Francis Narin and J. Davidson Frame. Science vol. 245. 11 August 1989. ● Article: “Strasbourg Home for Frontiers.” David Dickson. Science vol. 245. ● Note: faxed handwritten note from Aki? (Akihiro Yoshikawa) to Cook-Deegan. August 29, 1989. ● Proposal: Proposals for New Cooperative Activities under S & T Agreement. April 26, 1989. Faxed from Sara Bowden to Cook-Deegan. August 29, 1989. ● Memo: from Cook-Deegan to Akihiro Yoshikawa. I just made a bad mistake. 29 August 1989. ● Letter: from Cook-Deegan to Akihiro Yoshikawa. September 18, 1989. ● Article: “Japanese eye human genome.” David Swinbanks. Nature vol. 238. 16 July 1987. ● Article: “Consensus Elusive on Japan’s Genome Plans.” Science vol. 243. ● Letter: faxed from Robert J. Crawford to Cook-Deegan and Pam Lokken. May 30, 1990. ○ Memo: from Robert J. Crawford to Cook-Deegan and Pam Lokken. The Human Genome Project, MITI and Japanese business. May 30, 1990. ○ Letter: faxed from Robert J. Crawford to Cook-Deegan. June 6, 1990. ○ Memo: from Rob Crawford to Cook-Deegan. Contact list for Genome Project. June 6, 1990. ○ Letter: faxed from Robert J. Crawford to Cook-Deegan. June 8, 1990. ○ Memo: from Robert J. Crawford to Cook-Deegan. NSF Memo on Overview of Japanese Genome Project. June 8, 1990. ● Booklet: In Japanese. 1990. ● Article: “DNA research institute to open in Japan.” David Swinbanks. Nature vol. 349. 21 February 1991. ● Article: “Tapping Japanese Science.” Charles T. Owens. Issues in Science and Technology. Summer 1989. ● Telegram. From American Embassy Tokyo to Secretary of State Washington, DC. May 1990.

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Human Frontiers Science Program

● Article: “Human Frontiers Program seeks international help.” David Swinbanks. Nature vol. 330. 24/31 December 1987. ● Article: “Japanese budget requests for international collaboration.” David Swinbanks. Nature vol. 329. 10 September 1987. ● Article: “Human Frontiers at the Economic Summit.” David Dickson. Science vol. 236. 19 June 1987. ● Article: “Japan’s Human Frontiers project stays in the doldrums.” David Swinbanks. Nature vol. 328. 9 July 1987. ● Article: “Japan unveils its new space programme.” New Scientist 18 June 1987. ● Article: “An unfound problem.” Nature vol. 331. 25 February 1988. ● Article: “Japan approaches the human frontiers of research.” New Scientist 10 March 1988. ● Report: “The Human Frontier Science Program.” January 1987. Agency of Industrial Science and Technology, Ministry of International Trade and Industry. ● Report: “The Human Frontier Science Program.” January 1987. Agency of Industrial Science and Technology, Ministry of International Trade and Industry. ○ Report: “An Interim Report on Technology Development and International Cooperation toward the 21st Century.” Prepared by Study Committee on Technology and International Cooperation. February 1986. ○ Report: “Frontier Research Program.” Published by the Institute of Physical and Chemical Research. March 1986. ○ Letter: from Justin L. Bloom to Kevin M. Ulmer. January 8, 1987. ● Article: “Europe spurns Japan’s Human Frontier.” Bob Johnstone. New Scientist 5 February 1987. ● Report: “MAFF’s Genetic Engineering Guidelines.” 15 December 1986. (2 copies pg. 6) ● Article: “Japan’s frontiers research to cross international boundaries.” David Swinbanks. Nature vol. 332. 10 March 1988. General Genome

● Article: “Land of rising publication.” Nature vol. 346. 5 July 1990. ● Report: “The Growth of Japanese Science and Technology.” Francis Narin and J. Davidson Frame. Science vol. 245. 11 August 1989. ● Article: “Japanese Tap Advanced Technology to Accelerate Deciphering of DNA.” Stephen Kreider Yoder. Asian Wall Street Journal Weekly. Dec. 14, 1987. ● Report: “MAFF’s Genetic Engineering Guidelines.” (?) 15 December 1986. (pg. 8) ● Flyer and Registration: The Molecular Biology of Human Disease: an Asian Perspective. Presented by Bio/Technology, The National University of Singapore, and the Science Council of Singapore. October 5-7, 1987. Singapore. ● Contact list: Japan. ● Report: 1 December 1986. Seiken Kiko. ● Article: “Japanese eye human genome.” David Swinbanks. Nature vol. 328. 16 July 1987. ● List: Abstracts in Biocommerce. Vol. 10, No. 1, 11 January 1988. (2 pages) ● List: Abstracts in Biocommerce. Vol. 9, No. 19, 12 October 1987. ● Letter: from Richard W. Getzinger to Jacqueline Courteau. August 28, 1987. Cook-Deegan Box 5/28

NSF Report

● Report: “Frontier Research Program.” Published by the Institute of Physical and Chemical Research. March 1986. Correspondence: Jacqueline Corteau

● Letter: from Jacqueline Corteau to Ms. Murata. 29 January 1988. ● Letter: from Jacqueline Corteau to Minoru Kanehisa. 17 February 1988. ● Report memo: R&D on Human Gene Analysis and Mapping Systems Supported by Science and Technology Agency of Japan. August 31, 1987. Prepared by Masanobu Miyahara. U.S. Genome Projects & the Japanese

● Report memo: R&D on Human Gene Analysis and Mapping Systems Supported by Science and Technology Agency of Japan. August 31, 1987. Prepared by Masanobu Miyahara. ● Report: In Search of the “Ultimate Map” of the Human Genome: The Japanese Efforts. Akihiro Yoshikawa. ○ Memo: from Cook-Deegan to Kenishi Matsubara. Japan genome efforts in international context. 9 July 1989. ○ Letter: from Cook-Deegan to D. Allan Bromley. 18 September 1989. ○ Letter: from Cook-Deegan to Kenichi Matsubara. 26 September 1989. ● Memo: from Cook-Deegan to James Watson, Elke Jordan, Mark Guyer, Alexandra Stepanian, Ben Barnhart, Diane Hinton, Science Attache of US Embassy, Tokyo. Attached materials on Japan. 11 January 1989. ● Article: “Japanese Tap Advanced Technology to Accelerate Deciphering of DNA.” Stephen Kreider Yoder. Asian Wall Street Journal Weekly. Dec. 14, 1987. ● Article: “US pressures Japan over imbalance in basic research.” Alun Anderson. Nature vol. 329. 22 October 1987. ● Article: “Japan still seeking a role.” David Swinbanks. Nature vol. 342. 14 December 1989. ● Report: “The Report of the Special Committee on Bioscience and Biotechnology on the Promotion of the Human Genome Project.” The Science Council of Japan. 25 May 1989. ● Report: “Comprehensive Strategy for Promoting R&D on Human Genome Analysis.” Science and Technology Agency (STA), Government of Japan. March 27, 1989. ● Telegram: from American Embassy Tokyo to Secretary of State Washington, DC. July 1990. ● Article: “Watson versus Japan.” Leslie Roberts. Science vol. 246. ● Letter: from Kenichi Matsubara to James D. Watson. November 26, 1989. ○ Letter: from Kenichi Matsubara to David Swinbanks. November 25, 1989. ● Article: “Under the microscope.” Robert Crawford. Far Eastern Econ. Rev., September 1990. ● Article: “Japan Boosts Genome Research.” Leslie Roberts. 27 October 1989. ● Journal: Asia Technology. Vol. 2, No. 2. February 1990. ● Article: “A new direction for HUGO.” Christine McGourty. Nature 342. 14 December 1989. Cook-Deegan Box 5/28

○ Article: “Japan still seeking a role.” David Swinbanks. Nature 342. 14 December 1989. ● Article: “The grant-getting game in Japan.” Mitsuhiro Yanagida. Nature vol. 343. 11 January 1990. ● Article: “Japanese papers top the charts.” Alun Anderson. Nature vol. 343. 18 January 1990. ● Handwritten note. ● Fax of business card: Prof. Jiro Kondo D. Eng. Science Council of Japan. ● Newsletter: Genetic Engineering Letter. Vol. 9, no. 9. May 10, 1989.

Cook-Deegan Reports on Japan

● Business Cards: Hiroki Matsuo, Robert J. Crawford, Akihiko Mine, Susan K. Clymer. ● Letter: from Robert J. Crawford to Cook-Deegan. August 9, 1990. ● Letter: from Happei Miyakawa to Cook-Deegan. August 9, 1990. ● Memo: from Cook-Deegan to James Wyngaarden, Diane Hinton. HUGO notes on Japan trip, July 23-Aug. 4, 1990. 8 August 1990. ● Letter: from Cook-Deegan to James Wyngaarden. 8 August 1990. ● Memo: from Cook-Deegan to NCHGR (Watson, Jordan, Guyer, others), HUGO Americas (Hinton, Wyngaarden). Report of trip to Japan, 23 July-4 August. 7 August 1990. (2 copies) ● Notes: Meeting with Mishio Oishi. Tokyo University, Sanjo Kaikan. 25 July 1990. ○ Notes: Meeting with Akiyoshi Wada. Tokyo Club. 2 August 1990. ○ Notes: Minoru Kanehisa, Kyoto Univ. ○ Notes: Meeting with STA (kangaku jijutsu-cho) officials. Masato Chijaya and Hiroki Matsuo. 2 August 1990. ○ Notes: Dr. Michio Okamoto. ○ Notes: Conversation with Akihiko Mine, Japan Bioindustry Association. 3 August 1990. ● Brochure: Japan Bioindustry Association. ● Handwritten notes. ● Note: from Masaru Masuda to Cook-Deegan. July 1990. ● Japan Rail Pass. ● Handwritten notes. ● Memo: from Michio Oishi to Cook-Deegan. July 6, 1990. ● Letter: from Zbigniew Bankowski to Cook-Deegan. 27 March 1990. ● Note: from Miyako Hotel Tokyo to Cook-Deegan. July 2, 1990. ● Handwritten notes. ● Note: from Kenichi Matsubara to Cook-Deegan. July 9, 1990. ● Memo: from Cook-Deegan to Akihiko Mine. Meeting 3 August. 6 July 1990. ● Note: from Akihiko Mine to Cook-Deegan. Your proposed meeting 3 August 1990. 5 July 1990. ● Letter: from Kenichi Matsubara to Cook-Deegan. July 4, 1990. ● Memo: from Cook-Deegan to Motohide Konaka. Meeting in Tokyo on human genome project, August 2 or 3? June 29, 1990. ● Business cards: Masato Chijiya, Michio Okamoto, Akiyoshi Wada. Cook-Deegan Box 5/28

● Memo: from Rob Crawford to Cook-Deegan. Contact list for Genome Project. June 6, 1990. ● Telegram: From American Embassy Tokyo to Secretary of State Washington, DC. May 1990. ● Note: from Robert J. Crawford to Cook-Deegan. May 2, 1990. ○ Memo: from Robert J. Crawford to Cook-Deegan and Pam Lokken. Japanese participation in HUGO. May 2, 1990. ○ Note: from Robert J. Crawford to Cook-Deegan and Pam Lokken. May 14, 1990. ○ Note: from Robert J. Crawford to Cook-Deegan and Pam Lokken. May 1, 1990. ○ Memo: from Robert J. Crawford to Cook-Deegan and Pam Lokken. MITI participation in the genome project. May 15, 1990. ● Note: from Robert J. Crawford to Cook-Deegan. May 2, 1990. ○ Memo: from Robert J. Crawford to Cook-Deegan and Pam Lokken. Japanese participation in HUGO. May 2, 1990. ● Note: from Robert J. Crawford to Cook-Deegan. April 4, 1990. ○ Letter: from Robert J. Crawford to Cook-Deegan. April 4, 1990. ○ Memo: from Cook-Deegan to Robert Crawford. Genome background in Japan. April 13, 1990. ● Memo: from Cook-Deegan to Robert Crawford, CC James Watson, Elke Jordan, Pam Lokken. Japanese genome projects. 17 May 1990. ● Table (in Japanese) ● Letter: from Kenichi Matsubara to Cook-Deegan. August 3, 1990. ● Letter: from Elke Jordan to Happei Miyakawa. August 22, 1990. ● Note: from Cook-Deegan to Susan Clymer. 9 August 1990.

Japan 7/1990 Trip

● Report: Comprehensive Strategy for Promoting R&D on Human Genome Analysis. Council for Aeronautics, Electronics and Other Advanced Technologies. Science and Technology Agency (STA), Government of Japan. June 27, 1988. ● Booklet: STA: Its Roles and Activities 1988. ● Letter: from Masaru Masuda to Cook-Deegan. July 2, 1990. ● Memo: from Cook-Deegan to Masaru Masuda. Recent trip to Japan. 10 August 1990. ● Letter: from Shin-ichiro Niwa to Cook-Deegan. July 23, 1990. ○ Letter: from Cook-Deegan to Shin-ichiro Niwa. 10 August 1990. ● Memo: from Cook-Deegan to Shin-ichiro Niwa, Sumitomo Denko. Meeting on 31 July regarding human genome project in Japan? 12 July 1990. ● Memo: from Cook-Deegan to Ken-ichi Matsubara. Meeting on 31 July. 12 July 1990. ● Memo: from Cook-Deegan to Ken-ichi Matsubara. Meeting 31 July. 6 July 1990. ● Memo: from Cook-Deegan to Susan Clymer. See you next week. 12 July 1990. ● Letter: from Doods to Cook-Deegan. July 2, 1990. ● Memo: from Cook-Deegan to Mishio Oishi. Your fax of 6 July. 6 July 1990. ● Letter: from Zbigniew Bankowski to Cook-Deegan. 18 July 1989. ● Letter: from Zbigniew Bankowski to Cook-Deegan. 23 March 1990. ● Letter: from Kunio Yagi to Cook-Deegan. June 15, 1990. Cook-Deegan Box 5/28

● Summary, program, participants list: Genetics, Ethics and Human Values: Human Genome Mapping, Genetic Screening and Genetic Therapy. XXIVth CIOMS Conference organized in collaboration with CIOMS Subcommittee of the Science Council of Japan. 22-27 July 1990. Tokyo and Inuyama City, Japan. ● Letter: from Kunio Yagi to Cook-Deegan. June 5, 1990. ● Program: Public Lecture on “New Genetics and Society.” ● Memo: from Cook-Deegan to Susan Clymer. Coming visit to Japan. June 29, 1990. ● Letter: from Alexander M. Capron to Bartha Maria Knoppers. October 3, 1989. ● Summary, program, participants list: Genetics, Ethics and Human Values: Human Genome Mapping, Genetic Screening and Genetic Therapy. XXIVth CIOMS Conference organized in collaboration with CIOMS Subcommittee of the Science Council of Japan. 22-27 July 1990. Tokyo and Inuyama City, Japan. ● Letter: from Cook-Deegan to Zbigniew Bankowski. 2 August 1989. ● Letter: from Alexander M. Capron to Cook-Deegan. September 12, 1989. ● Memo: from Cook-Deegan to Susan Clymer. Japan trip. 2 July 1990. ● Memo: from Cook-Deegan to Dr. Mine. Possible meeting 3 August 1990. 2 July 1990. ● Memo: from Cook-Deegan to Michio Oichi. Human genome discussion, August 2 or 3. June 29, 1990. ● Letter: from Cook-Deegan to Kunio Yagi. 1 July 1990. ● Memo: from Cook-Deegan to Shin-ichiro Niwa. Request for meeting July 31. 2 July 1990. ● Memo: from Cook-Deegan to Masaru Masuda. Possible meeting 2 August. 2 July 1990. ● Memo: from Cook-Deegan to Michio Oishi. August 2 appointment. 2 July 1990. ● Memo: from Michio Oishi to Cook-Deegan. June 2, 1990. ● Memo: from Cook-Deegan to Ken-ichi Matsubara. Visit in Osaka July 31 p.m. June 29, 1990. ● Memo: from Cook-Deegan to Kimihiro Ito. Discussion in Tokyo on human genome project, August 2 or 3? June 29, 1990. ● Memo: from Cook-Deegan to Zbigniew Bankowski. Diane Hinton to CIOMS meeting? July 2, 1990. ● Memo: from Cook-Deegan to Alexander Capron. ADA status; Diane Hinton to CIOMS meeting? July 2,1990. ● Letter: from Doods to Cook-Deegan. March 20, 1990. ● Memo: from Cook-Deegan to Hotel Miyako. Arrival 22 July. 1 July 1990. ● Memo: from Cook-Deegan to Zbigniew Bankowski. Paper for July conference in Tokyo. 10 June 1990. ● Memo: from Cook-Deegan to Aki Yoshikawa. Upcoming Japan trip. 30 June 1990. ● Note: from Doods to Cook-Deegan. ● Article: “I Sink So.” Japan Bioindustry Association publication. 1990. ● Report: Data for M??? Report of July 1989. (In Japanese) ● Report: 19 July 1989. (In Japanese) ● Program: Public Lecture on “New Genetics and Society.” July 28, 1990. ● Handwritten note. ● Memo: from Cook-Deegan to Susan Clymer. Attached letter to Arnold Beckman. 24 September 1990. ○ Letter: from Cook-Deegan to Arnold O. Beckman. 24 September 1990. ● Report: NAGAYAMA Protein Array Project 1990-1995. Cook-Deegan Box 5/28

● Summary: XXIVth CIOMS Roundtable Conference. Genetics, Ethics, and Human Values: Human Genome Mapping, Genetic Screening and Therapy. Tokyo and Inuyama Japan 22-27 July 1990. ○ Report: Working Group on Genetic Screening and Testing. XXIVth CIOMS Conference: Genetics, Ethics, and Human Values. Report of Discussions. 24 and 26 July 1990. ○ Report: Working Group on Human Gene Therapy. XXIVth CIOMS Conference: Genetics, Ethics, and Human Values. Report of Discussions. 24 and 26 July 1990. No Folder

● Booklet: Monbusho. 1989. Ministry of Education, Science and Culture, Government of Japan. Japan Genome Efforts

● Article: “Consensus Elusive on Japan’s Genome Plans.” Marjorie Sun. Science vol. 243. 31 March 1989. ● Memo: from Cook-Deegan to Hiroki Matsuo. January 11-14 plans. 12 December 1990. ○ Letter: from Hiroki Matsuo to Cook-Deegan. ● Handwritten note: from Doods to Cook-Deegan. ● Letter: from Happei Miyakawa to Cook-Deegan. September 12, 1990. ● Letter: from Kenichi Matsubara to Cook-Deegan. August 3, 1990. (faxed August 24) ○ Letter: from Happei Miyakawa to Cook-Deegan. August 9, 1990. ○ Letter: from Elke Jordan to Happei Miyakawa. August 22, 1990. ● Booklet: The University Research System in Japan. Monbusho; Ministry of Education, Science and Culture. 1988. ● Memo: from Cook-Deegan to James Wyngaarden, Diane Hinton, James D. Watson, Elke Jordan. International genome program update. 22 October 1990. ● Report: Five-Year Plan for Promotion of the Human Genome Program at Universities (Report). July 11, 1990. Bioscience Sectional Meeting, Subcommittee for Regional Promotion of Studies Specified by the Academic Deliberative Council. ● Outline: Programs: Min. of Education; Sci. & Tech. Agency; Min. of Health; Min. of Trade & Ind. ● Business card: Happei Miyakawa. ● Table: Japanese “Human Genome Programs.” Financial State: Budget for Research. ● Letter: from ??? to Cook-Deegan. October 15, 1990. ○ Notes: Human Genome Workshop in Japan. October 15, 1990. ○ Article: “Japan still an island academically.” Alun Anderson. Nature vol. 344. 1 March 1990. ● Memo: from Cook-Deegan to Aki Yoshikawa. Your recent fax. 19 March 1990. ○ Letter: from Aki Yoshikawa to Cook-Deegan. March 7 1990. ○ Notes: International R&D Forum. Creating the New Wave; De-Mystifying Japan’s R&D through Private Initiative. ● Letter: from Doods to Cook-Deegan. March 20, 1990. ● Memo: from Cook-Deegan to Susan Clymer. Human Genome Project. March 21, 1990. ● Note: from Robert J. Crawford to Cook-Deegan and Pam Lokken. May 2, 1990. ○ Memo: from Robert J. Crawford to Cook-Deegan and Pam Lokken. Japanese participation in HUGO. May 2, 1990. ○ Note: from Robert J. Crawford to Cook-Deegan and Pam Lokken. May 14, 1990. ○ Note: from Robert J. Crawford to Cook-Deegan and Pam Lokken. May 1, 1990. ○ Memo: from Robert J. Crawford to Cook-Deegan and Pam Lokken. MITI participation in the genome project. May 15, 1990. Cook-Deegan Box 6/28

Folder 1 - DNA and international trade, Domenici, Chiles, Kennedy; Pepper, Geo Brown, Fall 1987 ● BRIE Working Paper- “The Japanese Challenge in Biotechnology: Industrial Policy” by Akihiro Yoshikawa. September 1987. ● Article- Research Policy 18 1989. “Collaborative ventures between U.S. and foreign manufacturing firms” by David C. Mowery ● Article- National Journal November 11, 1989. “Multiple allegiances” by Bruce Stokes ● Article- Scientific American October 1989 “The quiet path to technological preeminence” by Robert B. Reich ● Article- C&EN December 12, 1988. “Japan even with U.S. in high-tech indicators” by Wil Lepkowski ● Paper- An Analysis of Strategic Alliances in Biotechnology between U.S. Firms and Those in Europe and Japan by Arthur Klausner August 1989 ● Article faxed from Paul DelPonte to CD January 11, 1989. Time January 16, 1989. “Battle for the Future” ● Article- Science Vol 243- March 10, 1989. “Japan faces big task in improving basic science” by Marjorie Sun ● Article- Science 27 October 1989. “Japan boosts genome research” by Leslie Roberts ● Article- Science March 3, 1989 “Yeutter backs plan to map crop genes” by Mark Crawford ● Article – Science Vol 243 January 6, 1989 “NIH scientists agonize over technology transfer” by William Booth ● Article- Trends in Biotech 6 Jan-Feb 1988. “Biotechnology in Japan: a lesson in logistics? Part 1: the political substrate” by Alfred Scheidegger ● Roll Call July 10-16, 1989 “Competitiveness” Series of articles by Dan Quayle, Lloyd Bentsen, Jeff Bingaman, Pete Domenici, Rudy Boschwitz, Dick Gephardt, William Goodling, Robert Roe, Don Ritter and Tom DeLay

Folder 2 - Japan Biotech ● Article- Science Vol 245 August 11, 1989. “The growth of Japanese science and technology” by Francis Narin and J. Davidson Frame ● Article- High Technology August 1986 “In search of a winning strategy” by H. Garrett DeYoung ● Article- Nature Vol 323 25 September, 1986. “New rash of legal suits ahead” by Karen Wright ● Article- The New England Journal of Medicine- Report Vol 319, No 12. “Health policy report: Japan’s medical care system” by John K. Iglehart ● Article- The New England Journal of Medicine Vol 319 No 17 October 27, 1988. “Health policy report: Japan’s medical care system- Part 2” by John K. Inglehart ● Japan Bioindustry Letters by BIDEC. Abstract from “Fifth Symposium on Research & Development Project of Basic Technology for Future Industries” ● Article- Tibtech November 1988 Vol 6. “The human frontier science program: its aims and a proposal for its implementation” by Hiroshi Uemura Cook-Deegan Box 6/28

● Article- Tibtech February 1988 Vol 6. “Biotechnology in Japan: a lesson in logistics? Part II: the research policy” by Alfred Scheidegger ● BRIE Working Paper #33. Japanese Biotechnology: New Drugs, Industrial Organization, Innovation and Strategic Alliances by Akihiro Yoshikawa January 1988 ● Copy of above st ● CRS Review 101 Congress, First Session July 1989- Japan-U.S. Relations ● Draft of “Biotechnology in Japan Executive Summary” by Robert K. Fujimura

Folder 3 - Legislation, 100th Congress ● Text of S. 1966 ● Text of Trade Bill Amendment (Dominici) with notes ● Congressional Record June 17, 1988 Vol. 134 No 90 – Proceedings and Debates of the 100th Congress, Second Session ● Text of S. 2222 ● Congressional Record June 17, 1988. S.8061 ● Congressional Record July 10, 1987. S. 9706 ● Text of S. 1966 ● Congressional Record July 31, 1986. “Working together, benefitting all” ● Text of H.R. 393 ● Text of S. 1354 ● Article- Science Vol 240 May 13, 1988 “Labs struggle to promote spin-offs” by David Dickson ● Article- Nature Vol 329 October 22, 1987. “Agencies anxious as U.S. Congress fixes deadline for 1988 budget” by Joseph Palca ● Text of H.R. 3058

Folder 4 - Legislation/100th Congress II ● Memo from JBC to BCD, PJH, GBW. September 11, 1987. About S. 1480 hearings. ● Memo from CD to Stephen Keith, Health Policy Counsel, Senate Committees on Labor and Human Resources. November 25, 1987. Addendum to 24 November memo re legislation on biotechnology and human genome. Attached is November 24th memo re proposed legislation on biotechnology and human genome. Attached is draft of “Biotechnology and Competitiveness Act of 1987” ● Delegation for Basic Biomedical Research with business card of Eric Erdheim. Attached to summary of proposed committee structure ● Amendments to S. 1966 ● An explanation of S. 1480, as revised ● Draft agenda of Workshop on Human Gene Mapping August 31, 1987 ● Text of H.R. 3058 ● Letter from Pete V. Domenici and Wendell H. Ford to Gretchen Kolsrud August 13, 1987. About workshop in Santa Fe of Subcommittee on Energy Research and Development ● Text of S. 1966 ● Congressional Record March 4, 1988. S2060 Cook-Deegan Box 6/28

● Amendment No. 1627 to S. 1480 ● Text of S. 1078 ● Article- FDC Reports July 18, 1988. “Biotech competitiveness act draws administration opposition in subcommittee hearing on national policy commission: industry groups endorse senate bill” ● Article- The Blue Sheet Vol 31, No 29. July 20, 1988. ● Text of Biotechnology Competitiveness Act of 1987 ● Article- AP- “Bill would allow larger role for labs” June 9, 1987 ● Article- AP. “No title. June 11, 1987 ● Testimony of Richard D. Godown on S. 1480 before the Subcommittee on Energy Research and Development of the Senate Energy and Natural Resources Committee September 17, 1987 ● Letter from Edward M. Kennedy to John H. Gibbons. May 11, 1987. About mapping and sequencing genome and says he supports OTA study on feasibility ● Draft list of invitees ● List of participants for Workshop in Santa Fe

Folder 5 - Dominici’s Santa Fe Workshop 8/31/87 ● Congressional Record Vol 133. No 114. July 10, 1987

Folder 6 - 1991 Budget request ● 1991 House Q&As ● National Center for Human Genome Research- budget info, background, justification for HGP ● 1991 Senate Q&As ● Letter from William H. Natcher to CD. September 10, 1990. Acknowledge letter from August 16th. ● Letter from Anne S. Houser to Addresses. Attaches is summary of NIH related portions of the preliminary draft of the FY 1991 House Appropriations Report and a copy of relevant NIH draft report language ● International Funding for Human Genome Initiative ● Memo from CD to Erin Burgees. April 12, 1990. Re: report language for the appropriations committees ● List of questions, some crossed out ● Memo from Acting associate director of administration (Carl A. Fretts) to ICD directors. April 5, 1990. Draft reporting language ● Instructions for Draft House and Senate Report Language ● National Institute of Whatever (House) ● National Institute Whatever (Senate) ● Page limitations for Draft House and Senate Report Language ● Copy of page from unknown source. Labeled Senate ● Copy of page from unknown source. Labeled Senate

Cook-Deegan Box 7/28

Folder 1 - Dominci hearing 7/11/90 ● Article - The Scientist Vol 4, No 16 “On Capitol Hill: one day in the hard life of the genome project” by Jeffrey Mervis ● Article - The Scientist August 30, 1990 “Senate panel looks to genome project to save lives, strengthen U.S. economy” ● DOE News July 11, 1990 “DOE establishes center for human genome research at Livermore National Laboratory” by Jeff Sherwood ● Statement of Senator Wendell H. Ford July 11, 1990- Hearing on the Human Genome Project ● Statement of David J. Gales- before the United States Senate Committee on Energy and Natural Resources Subcommittee on Energy Research and Development July 11, 1990

Folder 2 - Health Manpower ● “Biotechnology: Unlocking the Mysteries of Disease” – Hearing of the Subcommittee on Health and Long-term Care-Witness list ● Statement by Donald A.B. Lindberg- before the above subcommittee March 6, 1987 ● Statement of Marie C. Gelato ● Statement of Hirschel Jaffe ● Charts submitt4ed by Harvey Golomb ● Statement of Mark Katz ● Testimony of Marshal F. Folstein ● Empty manila envelope ● Folder from National Library of Medicine ○ Left hand side- ■ National Library of Medicine organizational chart ■ National Library of Medicine fact sheet ■ Article - The Frederick Post February 15, 1986- “Good news about government” No author ■ National Library of Medicine Publications ○ Right hand side ■ Copy of H.R. 5271 99th Congress 2nd session ■ Handwritten note ■ National Library of Medicine “Medlars: The World of Medicine at Your Fingertips ● Statement of James B. Wyngaarden ● Statement of Victor A. McKusick ● Testimony of Donald S. Fredrickson ● Statement of Claude Pepper ● Article- News: Select Committee on Aging “Pepper Convenes Hearing to Explore Biotechnology’s Present and Future Capabilities: Calls for National Clearinghouse to Hold Data on this Cutting Edge Field of Scientific Endeavor” ● Draft statement of Richard Roberts ● U.S. Department of Health and Human Services “Talking One Genetic Language: the need for a National Biotechnology Information Center” ● Memo from Director, NIH to The Secretrary. April 6, 1988. Request for support for H.R. 393 ● Last page of a memo but no title/date- from Rosalind M. Gray

Cook-Deegan Box 7/28

Folder 3 - Complaints and Criticism ● Article- Science, Technology and Human Values. Vol 16, No 1. Winter 1991. “The impact of activist pressures on recombinant DNA research” by Isaac Rabino ● Article- The New York Times – June 5, 1990 “Vast, 15 year effort to decipher genes stirs opposition” by Natalie Angier ● Article- Science Vol 251 22 February 1991- “Views of the genome project” (letter) ● Article- Nature Vol 349 21 February 1991. “Presidential address sets the tone” by Barbara J. Culliton and Robert Pool ● Article- Science Vol 246 “Human genome project: who will pay?” by Philip Siekevitz (letter) ● Article – Science Vol 248 “Genetic and physical mapping of the human genome” by Jacques S. Beckmann (letter) ● Packet of memos between Elke Jordan and CD- March 1990. About reply to Rechsteiner, draft letter attached ● Another draft of letter, sent from Jordan to CD March 26, 1990 ● Article- The Scientist Vol 4, No 16, August 20, 1990-“On Capitol Hill: one day in the hard life of the genome project” by Jeffrey Mervis ● Article- Science Vol 248 June 29, 1990 “Tough times ahead for the genome project” by Leslie Roberts ● Copy of “Vast, 15 year effort to decipher genes stirs opposition” by Natalie Angier ● Article- Science Vol 249 “The human genome and other initiatives” by Bernard D. Davis and Colleagues ● Copy of Nature Vol 349 21 February 1991. “Presidential address sets the tone” by Barbara J. Culliton and Robert Pool ● Copy of “Vast, 15 year effort to decipher genes stirs opposition” by Natalie Angier ● Copy of Science Vol 251 22 February 1991- “Views of the genome project” (letter) ● Copy of Science Vol 248 “Genetic and physical mapping of the human genome” by Jacques S. Beckmann (letter) ● Article- The Blue Sheet May 30, 1990 “Human genome project characterized as ‘terrible science policy’ in letter writing campaign to NIH” ● Bitnet mail from JLP to CD May 1, 1990 – Missing grants: a commentary on Dr. Jordan’s response ● Letter from Elke Jordan to Senator William S. Cohen. January 9, 1990. About letter from Leslie Kozak ● Letter from William S. Cohen to Karen O’Steen December 15, 1989- About Kozak letter ● Letter from Leslie Kozak to Senator William S. Cohen November 30, 1989 ● Letter from Martin Rechsteiner to William F. Raub- February 26, 1990- criticisms of HGP ● Letter from Andras G. Lacko to Willaim F. Raub- February 28, 1990- agreement with Rechsteiner Cook-Deegan Box 7/28

● Letter from Patrick N. Shaklee to William F. Raub – February 27, 1990- agreement with Rechsteiner ● Letter from Melanie Ehrlich to William F. Raub- February 26, 1990 – agreement with Rechsteiner ● Response to Rechsteiner- not signed, no name ● Response to Shaklee- not signed, no name ● Letter from Frank Vazquez to Jane Peterson June 22, 1990- Attached is letter sent to Senator Gramm, Congressman Mike Andrews and William Natcher- support for HGP ● Letter from William H. Danforth to Senator Tom Harkin March 20, 1990- Support for HGP ● Letter from Phillip A. Sharp to William F. Raub- April 20, 1990- Support for HGP ● Letter from Gerald Soslau to Willaim F. Raub March 9, 1990 – Against HGP- Attached is Bitnet mail from JLP to CD May 1, 1990 – Missing grants: a commentary on Dr. Jordan’s response ● Article- The Blue Sheet May 30, 1990 “NIH five-year neuro-toxicological plan would increase federal research and interagency coordination- OTA” ● Article- The Blue Sheet May 30, 1990 “Human genome project characterized as ‘terrible science policy’ in letter writing campaign to NIH” ● Article- Science Vol 246 “Human genome project: who will pay?” by Philip Siekevitz (letter) ● Table of Content with handwritten note from Pam to CD ● Divider labeled I ○ Letter from Wendell H. Ford to James Watson June 12, 1990- about hearing of Subcommittee on Energy Research and Development July 11, 1990 ○ Member list of above subcommittee ○ Biography of Pete V. Dominici ○ Biography of Wendell H. Ford

● Divider labeled II ○ Committee on Energy and Natural Resources, Subcommittee on Energy Research and Development Hearing on the Human Genome Project July 11, 1990- Panel member list

● Divider labeled III ○ Testimony of James D. Watson ● Divider labeled IV ● Divider labeled V ○ National Center for Human Genome Research January 30, 1990- ○ National Institutes of Health Funding Estimates ○ National Institutes of Health Research project grants ○ Role of the Human Genome Research Centers ○ National Center for Human Genome Research Funding Estimates for FY 1991 through FY 1995 Cook-Deegan Box 7/28

● Divided labeled VI ○ Letter from James B. Wyngaarden to Dr. Soslau-April 16, 1990 response to letters critical of HGP ○ Rechsteiner letter to Raub ○ Wyngaarden response to letters criticizing HGP ○ Elke Jordan response to Michael Syvanen letter ● Divider labeled VII ○ The New Biologist July 20, 1990 “More opposition to the Human Genome Project” ○ Memorandum of understanding between the United States Department of Energy and the National Institutes of Health to coordinate research and technical activities related to the human genome ● Divider labeled VIII ○ Article from The New York Times June 5, 1990 – “Beginning scientists face a research fund drought” by Gina Kolata ○ Article- Science? 25 May 1990 “Genome project: An experiment in sharing” by Leslie Roberts ○ Article- Science Vol 248 “The great clone giveaway” by Leslie Roberts ○ Article- Nature Vol 345 May 10, 1990 “HUGO physical mapping” by Charles R. Cantor (letter) ○ Article- Science Col 248 6 April 1990 “The Human Genome Project: past, present and future” by James D. Watson ○ Article- Science Vol 248 6 April 1990 – “Orchestrating the Human Genome Project” by Charles R. Cantor ○ Article- Washington Post January 22 ,1990 “Survey: Firms back Human Genome Project” by B.R. ○ Letter from Charles F. Larson to William F. Raub- December 18, 1989 about survey of membership of Academy-Industry Program ○ Article from unknown source, no date “Watson doesn’t use gentle persuasion to enlist Japanese and German support for genome effort” ○ Article from unknown source, no date “New discoveries need vast sums/big projects and big politics” ○ The High Price of Future Scientific Progress- probably from above articles ○ Letter from Lee W. Rivers to Member Company Representatives and Alternates December 5, 1989- about Industrial Research Institute Inc. survey ○ Megaprojects Matrix A/B ○ Cost/Benefit Analysis of Human Genome Project ● Divider labeled IX ○ List of questions to Dr. Watson?

Cook-Deegan Box 7/28

Folder 4 - Materials collections ● Article- Medical World News July 11, 1988- “Medicine’s pack rats product results: collections” by Patricia Thomas ● American Type Culture Collection Catalogue of Recombinant DNA Collections 1st edition 1986 ● Repository of Human DNA probes and libraries

Folder 5 - Chromosome sorting ● Article- Science Vol 238 16 October 1987 “High speed chromosome sorting” by J.W. Gray, P.N. Dean, J.C. Fuscoe, D.C. Peters, B.J. Trask, G.J. van den Engh, M.A. van Dilla ● Letter from James H. Jett to CD May 3, 1988 – request copy of recently issues OTA report and he attached copies of articles on flow cytometry ○ Two drafts of letter to CD ○ Article- Lost Alamos Science Vol 1 No 1. “Flow cytometry: a new tool for quantitative cell biology” ○ Lasers in Biology and Medicine, edited by F. Hillenkamp, R. Pratesi and C.A. Sacchi – Plenum Press ○ Practical Flow Cytometry by Howard M. Shapiro. Alan R. Liss, Inc.

Folder 6 - DOE polices ● List of grants? ● Oak Ridge National Laboratory Biomedical and Environmental Sciences Program 1986 by J.L. Trimble, G.R. Carter, W.C. Carter, J.R. Ellis and V.S. Norman ● Brochure entitled Human Genome Distinguished Postdoctoral Fellowships 1991 ● Letter from M.A. Ferguson-Smith to Thomas B. Shows- December 15, 1986- about Palca article ○ Reply to Nature reporter Joseph Palca (Nature 323, October 23, 1986) ○ Letter from Leroy Hood to John Maddox- January 19, 1987- criticizing Palca article ○ Letter from Thomas B. Shows to John Maddox. January 22, 1986- criticizing Palca article ○ Nature Vol 323 23 October 1986- “Doubts about Department of Energy” by Joseph Palca ● Article- Science Vol 243- “Watkins takes the helm at DOE” by Mark Crawford ● Article –Research News February 10, 1989- “Detecting mutations in human genes” by Jean L. Mark ● Letter from Katharine Barrett and Susan Brady to CD April 21, 1989- invitation to Biotechnology Education Leadership Conference May 12-13- Attached is conference materials ● Article- BioScience Vol 39 No 6. “Mapping the human genome” ● Article-The Scientist March 5, 1990 “Lawrence Berkeley Lab expects gain from applied research, industry ties” by Frederic Golden Cook-Deegan Box 7/28

● Article- Research News November 16, 1990- “DOE to map expressed genes” by Leslie Roberts ● Health and Environmental Research Advisory Committee Subcommittee on Human Genome list of memebers ● Human Genome Quarterly Vol 1, No 1, Spring 1989 ● Biological and Environmental Research Human Genome Project ● Office of Energy Research Flow Chart ● Letter from C.E. Hildebrand to Colleague- September 30, 1987.Thanking for participation in Santa Fe Workshop “Exploring the Role of Robotics and Automation in Decoding the Human Genome” ● Letter from Ed Hildebrand, Mark Bitensky, Tony Beugelsdijk and Dan Knobeloch to CD. January 22, 1987. Thanking him for participating in Santa Fe workshop. ● Contacts at the Los Alamos National Laboratory with handwritten notes ● Mapping the Human Genome (Booklet from Lawrence Berkeley Laboratory) June 1989 ● A page from American Type Culture unknown date. “DOE grant to ATCC for pilot Human Genome Project ● Memo from M.W. Bitensky to Distribution. January 7, 1986. About a possible workshop in February ● Letter from Charles DeLisi to Mark W. Bitensky February 24, 1986. Discussion at genome workshop ● Letter from Christian Burks, Walter Goad, Jim Kicket, Ed Hildebrand, Bob Moyzis, Larry Deaven, Scott Cram, George Bell and Mark Bitensky. December 23, 1985. Desirability/costs/benefits of sequencing human genome ● Letter from Charles DeLisi to Alvin W. Trivelpeice. May 6, 1986. Possible phases of Human Genome Project. Attached is background ● Article- Inside Energy with Federal Lands January 12, 1987. “Expanded genome research seen leading to advances in energy, health” ● Article- Public Affairs vol 46, No 1. “Project to map human genome outlined by DOE Official” ● Copy of above ● Memo from Charles DeLisi to Alvin W. Trivelpiece. May 6, 1986. Information on mapping and sequencing human genome ● Article- DOE News September 9, 1987 “DOE centers formed to study the human genome” ● Letter from Dave to Charles. December 31, 1985. Comments and suggestions about proposed approach to human genome project. With handwritten note from Charles at bottom ● Letter from Charles to Dave. December 30, 1985. Thoughts on human genome project ● Letter from James F. Decker to James Wyngaarden. January 13, 1988. Thoughts on human genome project/DOE ● Letter from Mark W. Bitensky to Charles DeLisi. April 2, 1986. Results of workshop Cook-Deegan Box 7/28

● Department of Energy Support for Research Related to the Human Genome. 1982? ● Letter from David A. Smith to Teresa Myers. Relationship between different agencies. ● Human Genome Program: Future Priorities and Justification ● Letter from Thomas B. Shows to John Maddox. January 22, 1986- criticizing Palca article

Folder 7 - Joel Davis ● Letter in envelope from Joel Davis to CD- June 30, 1988. Wants to talk to him about book on Genome Project ● Letter from Joel Davis to CD- September 14, 1989. Wants to meet with CD some more ● Letter from Joel Davis to CD- January 23, 1989. Thanking CD for meeting with him ● Letter from Joel Davis May 18, 1989- Update in contact info

Folder 8 - DOE Steering Committee ● DOE Human Genome Steering Committee Report. January 16, 1989. ● DOE Human Genome Steering Committee Report October 18, 1989 ● Letter from Betty K. Mansfield to Reader. June 2, 1989. Says enclosed is information from page 8 of Human Genome Quarterly (nothing enclosed)

Folder 9 - Chromosomes: specific reports ● Chromosome 17 Workshop February 9-11, 1990- Info from workshop

Folder 10 - NSF Science Indicators 1980, 1985 ● Science Indicators 1980- Report of the National Science Board 1981 ● Science Indicators-The 1985 Report- National Science Board

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Folder 1 - RNA reactions; splicing ● Article- Science Vol 235. “Splicing of messenger RNA precursors” by Phillip A. Sharp ● Article- Scientific American June 1988 “Snurps” by Joan Argetsinger Steitz ● Article-Perspective 4 January 1991 “Mechanisms of alternative pre-mRNA splicing” by Tom Maniatis

Folder 2 - Animal models ● Article- Am. J. Hum. Genet. 43, 1988. “Minireview: creating animals models of genetic disease” by Robert P. Erickson

Folder 3 - C-value paradox ● Article-BioScience Vol 34 No 7. July/August 1984. “The C-value paradox” by Gordon P. Moore ● Article- Science Vol 233 26 September 1986. “Human genome sequencing” by Joseph G. Gall. (letter) ● Article- Science but vol unreadable. “Computer genome is full of junk DNA” by M. Michell Walberg

Folder 4 - Evolution nonhuman – Seminar Papers 1988-1989 written on front of folder ● Book review of Genetic Maps 1987- A Compilation of Linkage and Restrictions Maps of Genetically Studied Organisms, vol 4 edited by Stephen J. O’Brian. By Luigi Luca Cavalli-Sforza. In Genomics 2, 99 (1988) ● The Evolution of Vertebrate Plasma Proteins, Lecture by Russell F. Doolittle. The Biological Bulletin

Folder 5 - Evolutionary Theory ● Article- New Scientist March 3, 1988. “The fallacy of the unselfish gene”. Review of The New Biology by Robert Augros and George Stanciu, by John Galloway ● Article- Nature Vol 336 24 November 1988. “A simple measure of complexity” by Rolf Landauer ● Article- Nature Vol 329 15 October 1987. “Too much natural polymorphism” by Julee Greenough and Paul H. Harvey

Folder 6 - Direct Vis of DNA ● Article- The New York Times January 24, 1989. “DNA, molecule for heredity seen directly for first time” No author ● Article- Albuquerque Journal 4/10/89. “Chemists glimpse DNA” ● Article- AP 3/21/89 “Molecules of DNA photographed alive” No author. ● Artticle- AP 01/20/89. “Researchers make first microscope image of genetic structure” No author.

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Folder 7 - Control of gene expression ● Article- Nature Vol 336 24 November 1988. “Interaction at a distance between λ repressors disrupts gene activation” by A. Hochschild and M. Ptashne ● Article- Nature Vol 336 1 December 1988. “A hit-and-run mechanism for transcriptional activation” by Walter Schaffner ● Article- Nature Vol 336 8 December 1988. “Homoeo boxes, POU proteins and the limits to promiscuity” by Miranda Robertson ● Article-Nature Vol 335 20 October 1988. “How eukaryotic transcriptional activators work” by Mark Ptashne ● Article- Source unknown. “Inside the homeobox” by Allen S. Laughon and Sean B. Carroll

Folder 8 - Science articles on various organisms ● Article- Science Vol 240 June 10, 1988 “Primates” by Frederick A. King, Cathy J. Yarbrough, Daniel C. Anderson, Thomas P. Gordon, Kenneth G. Gould ● Article. – Science Vol 240, June 10, 1988. “Retroviruses”, by Harold Varmus ● Article- Science Vol 244 June 30, 1988. “Cetaceans” by Bernd Wursig

Folder 9 - Mouse Genome ● Computerized Map of the House by Thomas H. Roderick and Muriel T. Davisson ● Article- Nature Vol 328 July 16, 1987. “Memories of mother and father” by Marilyn Monk ● Report- Mammalian Genetics and Cancer: The Jackson Laboratory Fiftieth Anniversary Symposium. 1981. “Foundations for the future: formal genetics of the mouse” by Eva M. Eicher ● Letter from Kenneth P. Trevett to CD, May 4, 1989. Attached is resume, materials about The Jackson Laboratory ● Letter from P. D’Eustachio to Participants in the Princeton meeting. December 11, 1989. Description of the proposed mammalian genome organization. Attached is description

Folder 10 - Genes and sex determination ● Article- Science Vol 239 January 22, 1988 “A parent’s sex may affect gene expression” No author ● Article- BMJ Volume 297 10 September 1988. “Genes on the X and Y chromosomes controlling sex” by M.A. Ferguson-Smith ● Article- Nature Vol 346 July 19, 1990. “What makes a man a man?” by Anne McLaren. Attached to ○ “Additional deletion in sex-determining region of human Y chromosome resolves paradox of X, t(Y;22) female” by David C. Page, Elizabeth M.C. Fisher, Barbara McGillivray and Laura G. Brown (letter) ○ “The mapping to the sex-determining region of the mouse Y chromosome is a member of a novel family of embryonically expressed genece” by John Gubbay, Jerome Collignon, Peter Koopman, Blanche Capel, Androulla Economou, Andrea Munsterberg, Nigel Vivian, Peter Goodfellow and Robin Lovell-Badge Cook-Deegan Box 8/28

○ “The gene from the human sex-determining region encodes a protein with homology to a conserved DNA-binding motif” by Andrew H. Sinclair, Philippe Berta, Mark S. Palmer, J. Ross Hawkins, Beatrice L. Griffiths, Matthijs J. Smith, Jamie W. Foster, Anna-Maria Frischauf, Robin Lovell- Badge and Peter N. Goodfellow

Folder 11 - Drosophila genome ● Article- Science Vol 246 November 3, 1989. “Mapping the Drosohilia genome with yeast artificial chromosomes” by Dan Garza, James W. Ajioka, David T. Burke, Daniel L. Hartl

Folder 12 - Plant genome ● Article- Wall Street Journal May 27, 1986. “New genetic technology shortens time required to breed food-plant varities” Attached is business card of Wm. Hugh Bollinger ● Plant Molecular Biology Vol 5, No 2 1985. ● Article- Theor. Appl Genet 1896 72 “Construction of genetic linkage maps in maize and tomato using restriction fragment length polymorphisms” by T. Helentjaris, M. Slocum, S. Wright, A. Schaefer, J. Nienhuis ● Article- Bio/Technology Vol 5 June 1987. “Molecular markers in the genetic improvement of farm animals” by J.S. Beckmann and M. Soller ● Article- Theor Appl Genet 1988 75 “Assessment of the degree of restriction fragment length polymorphism in Brassica” by S.S. Figdore, W.C. Kennard, K.M. Song, M.K. Slocum and T.C. Osborn ● Minutes: Agricultural Biotechnology Research Advisory Committee March 23- 24, 1988 ● Minutes: Agricultural Biotechnology Research Advisory Committee June 23-24, 1988 ● Life Sciences February 16, 1990. “National initiative for research to be funded at $100 million in FY 91”

Folder 13 - Telometric repeats ● Article- Chromosoma (Berl)(1987) 95 “Human chromosome-specific repetitive DNA sequences: novel markers for genetic analysis” by R.K. Moyzis, K.L. Albright, M.F. Bartholdi, L.S. Cram, L.L. Deaven, C.E. Hildebrand, N.E. Joste, J.L. Longmire, J. Meyne, T. Schwarzacher-Robinson ● Article- Proc. Natl. Acad. Sci. USA Vo. 85. September 1988. “A highly conserved repetitive DNA sequence, (TTAGGG)n, present at the telomeres of human chromosomes” by Robert K. Moyzis, Judy M. Buckingham, L. Scott Cram, Maria Dani, Larry L. Deaven, Myrna D. Jones, Julianne Meyne, Robert L. Ratliff, Jung-Rung Wu ● Article- Science Vol 240 May 20, 1988. “Chromosomes: the ends in view” by Leslie Roberts ● Letter from Robert K. Moyzis to CD. May 31, 1988. Attached is preprint of paper “A highly conserved repetitive DNA sequence, (TTAGGG)n, present at the Cook-Deegan Box 8/28

telomeres of human chromosomes” and “Chromosomes: the ends in view” as well as pictures ● Article- Nature Vol 332 28 April 1988. “G-strings at chromosome ends” by Thomas R. Cech ● Article- Nature Vol 337 26 January 1989 “The beginning of the end” by Jack W. Szostak ● Letter from Ronald A. Walters to CD- January 27, 1989. He says reprints/preprints are enclosed but nothing attached ● “Chromosomes: the ends in view” ● Paper- “Labeling of Human Centromeres Using an Alphoid DNA Consensus Sequence: Application to the Scoring of Chromosome Abberations” by Julianne Meyne, L. Gayle Littlefield, R.K. Moyzis ● Article- Genomics 4 1989. “The distribution of interspersed repetitive DNA sequences in the human genome” by Robert K. Moyzis, David C. Torney, Julianne Meyne, Judy M. Buckingham, Jung-Rung Wu, Christian Burks, Karl M. Sirotkin and Walter B. Goad ● Article- Genomics 4 1989. “Human chromosome-specific repetitive DNA probes: targeting in situ hybridization to chromosome 17 with a 42-base-pair alphoid DNA oligomer” by Julianne Meyne and Robert K. Moyzis ● Paper- “Telomere staining of human chromosomes and the mechanism of radiation induced dicentric formation” by M.N. Cornforth, J. Meyne, L.G. Littlefield, S.M. Bailey and R.K. Moyzis. Submitted to Radiation Research

Folder 14 - DOE ● Department of Energy Office of Energy Research Special Research Grant Program Notice 90-5- Notice Inviting Grant Applications. Faxed to CD from Jeff Schmaltz February 28, 1990

Folder 15 - Grants ● National Center for Human Genome Research- Research Applications to May 1990 Council by Activity and Grant Number ● National Center for Human Genome Research- Research Applications to September 1990 Council by Activity and Grant Humber ● Genome Grants Paid in FY 1989- April 11, 1990 ● Another list of grants- Scientific Database FY 1989. Note from Pam to Bob saying also done for Bettie G. ● National Center for Human Genome Research- Research Applications to September 1990 Council by Activity and Grant Number

Folder 16 - Industrial Research, general NOS ● Article- C&EN September 26, 1988. “The shaping of the pharmaceutical industry” Review of Medical Science and Medical Industry: The Formation of the American Pharmaceutical Industry” by Jonathan Liebenau (reviewed by Harry M. Marke” ● Article- JAMA November 6, 1987 Vol 258 No 17. “Biomedical research in the industrial setting” by Philip Felig Cook-Deegan Box 8/28

Folder 17 - Competitiveness, NOS ● Article- Scientific American Vol 258, No 6. June 1988. “U.S. Economic growth” by Ralph Landau ● Lecture by Robert Solow delivered in Sweden December 8, 1987 when he received Nobel Prize for Economic Science. “Growth theory and after” by Robert Solow ● Article from Science- July 15, 1988. “U.S. competitiveness: beyond the trade deficit” by George N. Hatsopoulos, Paul R. Krugman, Lawrence H. Summers ● Article- Science Vol 241 15 July 1988. “Components of competitiveness” by Lawrence R. Klein

Folder 18 - Biotech business ● Article- World Winter 88. “Inventing the future” by S. Thomas Moser ● Biotechnology Patent Conference Workbook April 1898 ● Article- Chemtech March 1988 “Biotechnology: now and soon” by Luther H. Smithson ● Article- Nature Vol. 330 12 November 1987. “Patent office decision puts Genentech out in front” by Carol Ezzell ● Article- Science Vol 247 12 January 1990. “NIH conflict-of-interest guidelines shot down” by Joseph Palca ● Article- Discover June 1986. “Genetic engineering: hype, hubris, and haste” by Gina Maranto ● Article- Bio/Technology Vol 5, No 12, December 1987. “The U.S. regulatory patchwork” by Jeffrey L. Fox ● Article- Bio/Technology Vol 5 June 1987. “Commercial biotech’s founding fathers” by Mark D. Dibner ● Article- Science Resources Studies Highlights. March31, 1987. “Industrial biotechnology R&D performance Exceeded $1 billion in 1985” ● Article- The Scientist Vol 2, No 4 “Budget agreement could doom proposed boost in research” by Jeffrey Mervis

Outside of folders ● Overhead projector transparencies- Hershey Talk Outline March 13, 1990

Folder 19 - State and regional interests ● Article- Bulletin (University of Kansas Medical Center) September-November 1988. “Mapping out a body of knowledge” ● Article- Lawrence Daily Journal – World July 25, 1988. “KUMC takes role in ‘genome mapping’” ● Article- San Jose Mercury News March 2, 1988 “Charting the genes” by Mary A.C. Fallon ● Article- Washington Technology date illegible – not sure which article ● Article- Crain’s New York Business July 25, 1988. “New York losing the leading edge” by Theresa Agovino ● Letter from Lesley Allen to Pat Hoban. March 9, 1988. About resolution SRC 81 ● Senate Concurrent Resolution 81. March 2, 1988 ● Article- The Sacramento Bee Final March 3, 1988. “Garamendi: state needs science lead” by Thorne Gray ● Background information on resolution 81 Cook-Deegan Box 9/28

Folder 1 - Getting down to work OTA report released; the birth of a new discipline hearing; Watson goes to NIH; Cantor to LBL; MOU April and May 1988 ● Table of Contents- Program Advisory Committee on the Human Genome January 3-4, 1989 ● Agenda -Program Advisory Committee on the Human Genome January 3-4, 1989 ● Roster -Program Advisory Committee on the Human Genome January 3-4, 1989 ● Speakers -Program Advisory Committee on the Human Genome January 3-4, 1989 ● Charter- Program Advisory Committee on the Human Genome ● Office of Human Genome Research Administration Plan ● Memorandum of Understanding between the United States Department of Energy and the National Institutes of Health to Coordinate Research and Technical Activities Related to the Human Genome ● Genome Grants Paid in FY88 ● Copy of pages from Science Vol 243. “Science and the lame-duck budget” ● Cold Spring Harbor Meeting on Genome Mapping and Sequencing April 27-May 1, 1988. Notes. ● Current Topics: Cost of Human Genome Mapping ● Copy of page from unknown source- “Hereditary highway map: assessing the toll” ● Copy of page from The Scientist July 11, 1988. “Renowned bioengineer picked to head Lawrence Berkeley Human Genome Center” No author.

Folder 2 - Company positions ● Letter from Jack B. McConnell to CD. October 28, 1988. Thanking him for participating on Ethical and Intellectual Property Issues. ● Letter from James F. Childress to CD- July 16, 1987. Confirming participation in the Medical Center Hour on Wednesday October 21. ● Letter from James F. Childress to CD- October 26, 1987. Thanking him for participation ● Letter from George Poste to CD- October 16, 1987. Thanking him for participation in PMA Biotechnology Symposium ● Information sheet about October 21, 1987 Mapping and Sequencing the Human Genome: Scientific, Social and Ethical Issues ● Memo from Lisa Raines to Government Relations Committee. September 1, 1987. Results of IBA membership survey on mapping the human genome ● Letter from Susan Racca to CD. June 30, 1987. Attached is program for IBA sixth annual meeting October 1987 ● Paper: Human Genome Mapping and Sequencing: Why We Should Do It – Now! By L. Patrick Gage. Presented at the Industrial Biotechnology Association Meeting “Public Understanding of Biotechnology: The Impact on Public Policy” May 12, 1988 ● IBA folder with materials from the above conference ● Envelope from IBA to CD with more conference materials, brochures etc. ● Folder from Pharmaceutical Manufacturers Association Biotechnology and Human Health Care Symposium October 11-14, 1987 ○ Letter from William Szkrybalo to CD September 28, 1987. Asking him to provide his slides and notes for presentation ○ Invitation to participate in First BAC Symposium October 11-14, 1987 ○ Letter from George Poste to CD. August 20, 1987. Asking speakers not to be overly scientific ○ Letter from Georg Post to CD- May 12, 1987. Attached is proposed program ○ Registration list for symposium ○ Letter from Indra Mahabir to CD- June 22, 1987. Asking him for title of talk ○ Brochure from symposium Cook-Deegan Box 9/28

Folder 3 - The press weighs in Jockeying for the best light in Science and Nature, Fortune, Business Week, Atlantic, Time, Newsweek Summer and Fall 1986, with carryover to later ● Article- Bio/Technology Vol 4 November 1986. “Sequence the human genome” by Douglas McCormick ● Article-The Scientist November 16, 1987. “The case against gene sequencing” by Robert A. Weinberg ● Article-New Scientist 5 March 1987. “The race to map the human genome” by Christopher Joyce ● Article-New Scientist 5 March 1987. “1: Mapping genes: the bottom up approach” by Gall Vines ● Article-New Scientist 5 March 1987. “Genes on the production line” by Bob Johnstone ● Article-New Scientist 5 March 1987. “Making machines to manipulate DNA” No author ● Article- Research News 13 February 1987. “National academy looks at human genome project, sees progress” By Roger Lewin ● Article-Science Vol 233. “Shifting sentiments over sequencing the human genome” by Roger Lewin ● Article- Research News- “Human genome: question of cost” by Leslie Roberts ● Article-Nature Vol 331 11 February 1988. “Why sequence the human genome?” No author ● Article- Nature Vol 326 2 April 1987. “Human genome sequencing plan wins unanimous approval in US” by Joseph Palca ● Article-Nature Vol 329 24 September 1987. “US Congress adds its voice to the genome-sequencing chorus” by Joseph Palca and Carol Ezzell ● Article- Unknown source “Politics of the genome” by Roger Lewin ● Computers in Science Premiere 1987 ● Article- U.S. News and World Report “Reading the human blueprint” by Kathleen McAulife ● Article- Bio/Technology “Genome acquisition syndrome” by Jeffrey L. Fox ● Article-The AAAS Observer 3 November 1989. “A scientist turns journalist” No author ● The Scientist Subject Index ● Article-The Lancet May 16, 1987 “Mapping the human genome” No author ● Article- Unknown Source “Scientists, policy makers take first steps” by David L. Wheeler ● Article- The Economist February 20, 1988 “The mapping of man” No author ● Article- Nature Vol 322 10 July 1986. “Human gene cloning: the storm before the lull” by Joro Schmidtke and Michael Krawczak ● Article- From unknown source “Human genome sequencing” by Clement L. Counts III (letter) ● Article- Nature Vol 328 16 July 1987 “New research machinery needed” No author Cook-Deegan Box 9/28

● Article- Nature Vol 325 February 19, 1987 “Interest in the human genome project reachers new heights” by Joseph Palca ● Article- Nature Vol 322 3 July 1986 “The proper study of mankind” by Miranda Robertson ● Article- Nature Vol 330 12 November 1987 “Genome sequencing” by Martin Luck (letter) ● Article- Nature Vol 329 8 October 1987 “But whose genome” by Devaid Tepfer (letter) ● Article- Research News 16 October 1987 “New Sequencers to take on the genome” by Leslie Roberts ● Article- Science Vol 237 “Agencies vie over human genome project” by Leslie Roberts ● Article- Science Vol 237 “Who owns the human genome?” by Leslie Roberts ● Article-Research News 11 July 1986. “Molecular biology of homo sapiens” No author ● Article- Science Vol 236 No 4801 May 1 1987 “Sequencing the human genome” by Daniel E. Koshland, Jr. ● Article- ISI Press Digest No 40 October 5, 1987 “The human genome initiative” No author ● Article-Public Affairs Newsletter Vol 20, No 7 July 1987. “USDA animal welfare regs exceed legislative intent” ● Draft article for The Scientist November 86. No title. Joshua Lederberg ● Draft article Easterbrook December 10, 1987. With handwritten note to CD from G ● Letter from Gregg Easterbrook to CD in envelope thanking him for Newsweek piece

Folder 4 - Rowley Proposals on genetic screening for CF ● DOE Proposal form filled out by Rowley dated 7/27/1990 ● Letter from Peter T. Rowley to Eric T. Juengst June 18, 1990. About proposal ● Summary statement for proposal ● Letter from Peter T. Rowley and Haig Kazazian to Eric Juengst. August 7, 1990. about proposal, funding ● Letter from Peter T. Rowley to CD September 17, 1990. Attached is previous grants submitted, applications and proposals, resume etc ● Department of Health and Human Services Grant application for Evaluation of Carrier Screening for Cystic Fibrosis project. Dated 1/19/90- Attached is all application materials

Folder 5 - ADA fact sheet ● Letter from CD to Alex. August 15 1990 Forwarded letter, about floor debate ● Letter from CD to Elke Jordan, Mark Guyer, Pam Lokken, Eric Juengst. July 2, 1990. Attached is letter to Congressman Hoyer about ADA ● Letter from Alexander Capron and Edmund Pellegrino and CD to Senator Harkin. June 25, 1990. Congratulations for passing ADA. Attached is copy of fact sheet about act. Cook-Deegan Box 9/28

● Draft letter to Harkin, Hoyer, Silverstein, Feldblum and Chavkin. Similar to above ● Letter from CD to Jerry Mande. June 6, 1990. About ADA bill and fact sheet ● Fact sheet about the act ● Copy of above letter ● Fax of fact sheet from CD to Alex Capron June 20, 1990 ● A different copy of fact sheet ● Letter from CD to Elke Jordan, Mark Guyer, James Watson, Pam Lokken, Leslie Fink and Eric Juengst. About fist draft of fact sheet, attached ● Copy of above ● Letter from Elinor Langfelder to CD August 20, 1990. Packet with information about genetic testing. Packet of Congressional Record articles from the House. ● Another packet of Congressional Record articles from the Senate ● Executive Summary- ADA Definition of Disability ● Congressional Record July 12, 1990- debate over ADA Act of 1990

Folder 6 - CF screening ● Letter from BB to CD- September 12, 1990. Attached is copy of WHO report on the meeting on Cystic Fibrosis Community Control ● Department of Health and Human Services – Omnibus Solicitation of the Public Health Service for Small Business Innovation Research (SBIR) Grant applications ● Article- Science Vol 250 “Hopeful news for CF pilot studies” ● Article- Science Vol 250 “Cystic Fibrosis pilot projects go begging” by Leslie Roberts ● Article- Am J. Hum. Genet. 47: 603-605 1990. “Invited editorial: carrier screening for cystic fibrosis” by Arthur L. Beaudet ● Article- Am J. Hum. Genet. 47, 1990. “Worldwide survey of the Δf508 mutation- report from the cystic fibrosis genetic analysis consortium” by The Cystic Fibrosis Genetic Analysis Consortium (letter) ● Report of the Genetic Testing Committee to the Medical Section of the American Council of Life Insurance – The Potential Risk of Genetic Testing in Risk Calculation ● Article- JAMA May 23/30 1990 Vol 263, No 20. “The Cystic Fibrosis gene: medical and social implications for heterozygote detection” by Benjamin S. Wilfond and Norman Fost ● Article- Prenatal Diagnosis Vol 9 1989. “Community attitudes to cystic fibrosis carrier testing in England: a pilot study” by R. Williamson, M.E.D. Allison, T.J. Bentley, S.M.C. Lim, E. Watson, J. Chapple, S. Adam and M. Boulton ● Office of Technology Assessment Propose Project – Cystic Fibrosis: Implications of Population Screening ● Article- Nature Vol 342 23 November 1989. “CF screening premature?” by Christine McGourty ● Article- Nature Vol 342 9 November 1989. “Carrier screening in CF” by Leo P. Ten Kate (letter) ● Article- Am. J. Hum. Genet. 47, 1990. “Population screening for cystic fibrosis” by David Brock Cook-Deegan Box 9/28

● Article- Science Vol 250 “Cystic Fibrosis pilot projects go begging” by Leslie Roberts ● Letter from Robyn Y. Nishimi to Individuals interested in insurance and cystic fibrosis. January 22, 1991. OTA workshop “Cystic Fibrosis, Genetic Screening and Insurance” ● Program of above workshop ● Tentative list of participants from above workshop ● Letter from Robyn Y. Nishimi to Individuals interested in genetic screening. February 22, 1991. OTA Advisory Panel meeting “Cystic Fibrosis: Implications of Population Carrier Screening” Attached is program, panel list and project description

Folder 7 - CRG Position Papers ● Letter from J. Robert Nelson to Colleague. About two national conferences 1990 and 1992- Genetics, Religion and Ethics. ● Article- Human Genome News, January 1991 “Genetics, Religion and Ethics Initiative holds conferences” ● Letter from Eric Juengst to CD. March 19, 1990. About talk at conference ● Printout of Bibliographic citation list generated by Medlars II ● Letter from CD to James Watson, Nancy Wexler, Elke Jordan and Eric Juengst. January 11, 1989. First reactions to CRG position papers ● Letter from CD to Elke Jordan, Mark Guyer, Pam Lokken and Eric Juengst. July 2, 1990. More ADA bill background- attached is letter to Hoyer and Position Paper on Genetic Discrimination ● GeneWatch July-October 1988 ● Letter from Nachama L. Wilker to CD- January 10, 1990. Attached is position paper from Council for Responsible Genetics on the Human Genome Initiative and Genetic Discrimination ● Article- New Horizons Vol 17, No 2. Fall 1990 “The next stage of ‘Genetics, Religion and Ethics’” ● Letter from Charles F. Larson to William F. Raub. December 18, 1989. Attached is a survey of membership on prioritization of Federal R&D megaprojects ● Article- Bulletin of Park Ridge Center 6:2 January 1991. “Conference notes: A national study conference on Genetics, Religion and Ethics” by James H. Furr

Folder 8 - Brody: Genet tstg/workplace ● Letter from Baruch A. Brody to Gladys B. White/CD. Saying he made modifications throughout report. ● Report- The Ethics of Genetic Testing in the Workplace, by Baruch A. Brody- submitted to OTA

Cook-Deegan Box 10/28

Folder 1 - Lori Andrews: Confid of Genetics/NFO ● Report- Confidentiality of Genetic Information in the Workplace, by Lori Andrews and Ami Jaeger

Folder 2 - Robt Isaac Filed: Legal Issues re gent testing/workplace ● Report- Selected Legal Issues Surrounding Genetic Testing in the Workplace, by Robert Isaac Field, prepared for United States Congress, Office of Technology Assessment study of genetic testing in the workplace, January 14, 1989

Folder 3 - Hall: OTA Contr. on Genet tests/insurance ● Letter from Neil A. Holtzman to Charles P. Hall. August 7, 1986. About paper for OTA ○ Report- Predictive Genetic Tests: Implications for Insurance and Employment, by Charles P. Hall, Jr. Temple University December 1986. With handwritten notes ○ Letter from Neil A. Holtzman to Charles P. Hall. January 14, 1987. List of suggestions for paper ○ Maria’s comments on Chuck Hall’s Paper ○ Letter from Charles P. Hall to Neil A. Holtzman/Tony. February 23, 1987. Response to suggessions

Folder 4 - Rothstein ● Memorandum of call slip- Mark Rothstein called CD June 27 ● Letter from Mark A. Rothstein to CD- June 21, 1990. NIH agreed to fund conference “Legal and Ethical Issues Raised by the Human Genome Project” and be held March 7-9, 1991 ○ Attached is schedule for conference ● Proposal from Mark S. Frankel and Albert H. Teich to Advisory Committee: Project Proposal on the Ethical and Legal Implications of Genetic Testing. June 7, 1990 ● Draft paper. Medical Screening and Employment Law: A Note of Caution and Some Observations, by Mark A. Rothstein ● Paper- Legal and Ethical Issues in the Laboratory Assessment of Genetic Susceptibility to Cancer, by Mark A. Rothstein

Folder 5 - ELSI mtg, 11-12 September 1990. Rockville Day’s Inn CF, Future of ELSI, insurance ● Draft paper- Working group on Ethical, Legal and Social Issues in Human Genome Research National Center for Human Genome Research and Department of Energy. Workshop on the Introduction of New Genetic Tests. September 10, 1990 ● Unsigned letter to Nancy Wexler from CD to Professor Capron re: draft letter for Senator Harkin’s staff to send back to Alex Capron. September 18, 1990 ● Letter from CD to Eric Juengst. No date. Re: insurance issues ○ Letter from CD to Tom Murrary. September 19, 1990. Re: issues related to private insurance Cook-Deegan Box 10/28

○ List of categories with some individuals ● Letter from CD to Nancy Wexler. September 23, 1990. ELSI meeting summary ○ List of categories with some individuals ○ About ELSI Working Group ○ Letter from CD to Tom Murrary September 19, 1990. Re: issues related to private insurance ○ Letter from CD to Eric Juengst. September 19, 1990. Re: insurance issues ○ Draft letter from CD to Nancy Wexler. September 18, 1990. ○ Draft letter from CD to Nancy Wexler. September 18, 1990 ○ Part of a paper called ELSI’s Future ○ Letter to James Watson, Elke Jordan, Eric Juengst, ELSI working group from CD. September 18, 1990. RE: ELSI working group ○ Letter from CD to Nancy Wexler. September 23, 1990. Draft meeting summary attached ○ Workshop on Cystic Fibrosis Testing and Screening. Working Group on Ethical, Legal, and Social Issues in Human Genome Research. September 10, 1990 ● Article. Science Vol 250. “Cystic fibrosis pilot projects go begging” ● Letter from Eric T. Juengst to CD. December 13, 1990. Follow up from September workshop

Documents outside folders ● Letter from Eric Juengst to Members, NIH-DOE Working Group on Ethical, Legal and Social Issues. October 18, 1990. Draft commissioned background papers and report to Congress ● Draft report: Department of Health and Human Services- The Ethical, Legal and Social Implications of Human Genome Research: Preparing for the Responsible Use of New Genetic Knowledge, by William F. Raub, January 1991 ● Brochure: What does it mean to be a carrier of cystic fibrosis ● Attached to above brochure is report- Genetic Discrimination: Use of Genomic Information to Exclude Persons from Employment, Insurance, and Access to Health Care, by Larry Gostein ● Attached to above report is another brochure for Cystic fibrosis testing th ● Proceedings of the 4 Annual Lawrence Hall of Science High School Science Symposium on Science and Societal Issues- 1989

Cook-Deegan Box 10/28

National Institute of Health Folder -in left hand pocket ● Candidates for ELSI Insurance Taskforce ● Information sheet for “The Human Genome Project: New Tools for Tomorrow’s Health Research” January 14, 1991 ● Reimbursement information ● Article from unknown source. “Hopeful news for CF pilot studies”

-in right hand pocket ● Report- “The Ethical, Legal and Social Implications of Human Genome Research: Preparing for the Responsible Use of New Genetic Knowledge” by William F. Raub, January 1991 ● Ethical, Legal and Social Implications (ELSI) Program National Center for Human Genome Research (NCHGR) FY 1990 Program Activities ● ELSI grants and contracts funded in FY 1990 ● National Academy of Sciences Institute of Medicine Proposal No. 90- 233b. “Predicting Future Disease: Issues in the Development, Application, and Use of Tests for Genetic Disorders” by Gary E. Dwoskin and Ruth Ellen Bulger. May 1990 ● Fax coversheet from Elinor Langfeider to CD December 27, 1990 with nothing attached ● Handwritten note ● Letter from Nancy S. Wexler to CD. December 26, 1990. About next ELSI workshop ● Letter from Eric Juengst to ELSI Working Group Members. December 20 1990. Enclosed is background for discussion ● List of members of joint working group on ELSI of human genome research ● OTA Report Brief October 1990 ● Genetic Testing and Insurance ● Schedule for working group meeting January 7-8, 1990 ● OTA Advisory panel members of Cystic Fibrosis: Implications of Population Screening ● List of members of NIH-DOE Joint working group on ELSI of human genome research. January 7-8, 1990 ● Handwritten notes

Folder 6 - ELSI ● Letter from Elinor J. Langfelder to CD. September 9, 1990. Asking him to review FY 1990 activities of ELSI ● Ethical, Legal and Social Implications (ELSI) Program National Center for Human Genome Research (NCHGR) FY 1990 Program Activities

Cook-Deegan Box 11/28

ELSI Workshop Sept. 1990 Tape Transcript 1

● Memo: from Elinor Langfelder to Cook-Deegan. Transcript of the September 10 Workshop. September 19, 1990. ○ Memo: from Candee Wilson to Elinor Langfelder. Transcription. September 19, 1990. ○ Name list: NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research. Workshop on the Introduction of New Genetic Tests. September 10-11, 1990. ○ Transcript: Workshop on the Introduction of New Genetic Tests. ELSI Workshop Sept. 1990 Transcript of Tape 2

● Transcript: tape 2 ELSI Workshop Sept. 1990 Transcript of Tape 3

● Transcript: tape 3 ELSI Workshop Sept. 1990 Transcript of Tape 4

● Transcript: tape 4 IOM Genome Paper

● Business card: Yorick Blumenfeld ● Letter: from June Peters to Cook-Deegan. March 26, 1990. ● Letter: from Mary B. Mahowald to Cook-Deegan. March 22, 1990. ● Handwritten notes. ● Curriculum vitae: Jacqueline B. Courteau. ● Receipt: The Human Genome Project. January 25, 1990. ● Memo: from Kathi Hanna to Participants in March 8-10, 1990 “Decision Making” Meeting, Irvine, California. Travel Plans. January 29, 1990. ● Receipt: National Academy of Sciences. October 31, 1989. ● Receipt: Mac Corner. January 27, 1990. ● Receipt: Mac Corner. January 26, 1990. ● Memo: from Cook-Deegan to CeCe Clement. Invoice for IOM order number 26876. 27 January 1990. ● Memo: from Kathi Hanna to Cook-Deegan. Project Outline. December 7, 1989. ● Letter: from Kathi E. Hanna to Cook-Deegan. October 16, 1989. ○ Letter: from Cook-Deegan to Kathi E. Hanna. 23 October 1989. ● Notes: Case Descriptions. ● Name list: Committee to Study Decisionmaking with Respect to the Acceptance by the Public of Advances in Biology and Technology when Applied to Health. July 26, 1989. ● Report (Draft): The Human Genome Project: Formation of Federal Policies in the United States, 1986-1990. By Cook-Deegan. May 21, 1990. ● Report (Draft): The Human Genome Project: Formation of Federal Policies in the United States, 1986-1989. By Cook-Deegan. January 25, 1990. ● Report (Draft): Comments on the Genome Project Case Study—P. Berg. July 2, 1990. ● Call memo: Call from Kathi Hanna to Cook-Deegan. ● Call memo: Call from Tracy Friedman to Cook-Deegan. ● Memo: from Cook-Deegan to Paul Berg. Your IOM commentary. 17 July 1990. Cook-Deegan Box 11/28

Genome Book/Comment on IOM Paper

● Report (Draft): The Human Genome Project: Formation of Federal Policies in the United States, 1986-1990. By Cook-Deegan. May 21, 1990. ● Letter: from Steve Hall to Cook-Deegan. 2 August 1990. ● Letter: from Walter Bodmer to Cook-Deegan. July 3, 1990. ● Handwritten note from Mrs. George F. Cahill Jr. (?) to Cook-Deegan. ● Letter: from Charles R. Scriver to Cook-Deegan. July 31, 1990. ● Memo: from Cook-Deegan to Ted Friedmann. Corrections for Genome history in Molecular Genetic Medicne, Vol. 1. 19 December 1990. ● Letter: from Jean Dausset to Cook-Deegan. November 23, 1990. ● Letter: from Renato Dulbecco to Cook-Deegan. October 4, 1990. ○ Fax: from Bruce Albert to Cook-Deegan, responding to Cook-Deegan’s letter 18 September 1990. ○ Letter: from Paul Berg to Cook-Deegan. July 26, 1990. ○ Report: The Genesis of a Major New Undertaking in Biology; Comments on the Genome Project Case Study—P. Berg. July 23, 1990. ● Letter: from Charles R. Cantor to Cook-Deegan. July 16, 1990. ● Draft: Appendix 4: Is Cost Wobble a Serious Problem? BioFutur

● Letter: from Cook-Deegan to Betty Dodet. 15 August 1990. ● Letter: from Betty Dodet to Cook-Deegan and James Watson. 12 July 1990. ● Memo: from Cook-Deegan to Betty Dodet. Attached MS. 30 June 1990. ○ Report (draft): Perspectives on the Human Genome Project. James Watson and Cook-Deegan. Submitted to BioFutur. July 1990. ● Memo: from Cook-Deegan to Betty Dodet. BioFutur article. 21 June 1990. ○ Letter: from Betty Dodet to Cook-Deegan. 11 June 1990. ● Memo: from Cook-Deegan to James Watson. Biofutur article. May 10, 1990. ○ Letter: from Betty Dodet to Cook-Deegan. 11 May 1990. ○ Draft contents: Genomes: Mapping and sequencing. BioFutur—Special issue. 11 May 1990. ● Letter: from Giorgio Bernardi to James Watson. March 16, 1990. ● Memo: from Cook-Deegan to Betty Dodet. Biofutur article by Watson and Cook- Deegan. April 16, 1990. ● Letter: from Betty Dodet to James Watson. 17 March 1990. ● Letter: from Betty Dodet to Cook-Deegan. 22 June 1990. ● Letter: from Betty Dodet to Cook-Deegan. 24 August 1990. ● Memo: from Cook-Deegan to Jim Watson. BioFutur MS. 24 August 1990. ● Memo: from Cook-Deegan to Betty Dodet. Watson/Cook-Deegan MS. 24 August 1990. ● Report: Perspectives on the Human Genome Project. James Watson and Cook-Deegan. Submitted to BioFutur. July 1990. Cook-Deegan Box 12/28

Daily Telegraph

● Memo: from Cook-Deegan to Elke Jordan, Leslie Fink, Eric Juengst, James Watson. Status of manuscripts. July 12, 1990. ● Newspaper: The Daily Telegraph: Science Extra. September 1989. ● Memo: from Cook-Deegan to Elke Jordan, Mark Guyer. Attached MSs. June 27, 1990. ● Letter: from James D. Watson to Roger Highfield. 27 June 1990. ● Letter: from James D. Watson to Roger Highfield. 13 May 1990. ● Memo: from Cook-Deegan to Leslie Fink, Elke Jordan. Two attached articles. 20 June 1990. ○ Report: “The Genome Adventure.” James D. Watson. Proposed article for the Telegraph special issue on Science) ● Letter: from Roger Highfield to James Watson. 24 April 1990. International Health/JAMA

● Postcard: from The Journal of the American Medical Association to James D. Watson. January 25, 1990. Re: manuscript “The Human Genome Project and International Health.” ● Memo: from Cook-Deegan to Elke Jordan, Leslie Fink, Eric Juengst, James Watson. Status of manuscripts. July 12, 1990. ● Article: “The Human Genome Project and International Health.” James D. Watson and Cook-Deegan. JAMA vol. 263, no. 24. June 27, 1990. ● Letter: from Annette Flanagin to Cook-Deegan. Re: CO0013, “The Human Genome…” April 23, 1990. ● Memo: from Cook-Deegan to Andrea, CC Leslie Fink. JAMA MS. April 12, 1990. ● Letter: from James D. Watson, Cook-Deegan to Annette Flanagin. April 12, 1990. ● Memo: from Cook-Deegan to Elke Jordan, Leslie Fink, Mark Guyer, Pam Lokken. JAMA article. April 12, 1990. ○ Report: “The Human Genome Project and International Health.” James D. Watson, Cook-Deegan. ● Draft: “The Human Genome Project and International Health.” James D. Watson, Cook- Deegan. January 10, 1990. ● Report: “The Human Genome Project and International Health.” James D. Watson, Cook-Deegan. January 23, 1990. California Pediatrician

● Memo: from Cook-Deegan to Elke Jordan, Leslie Fink, Eric Juengst, James Watson. Status of manuscripts. July 12, 1990. ● Memo: from Cook-Deegan to Elke Jordan, Mark Guyer. Attached MSs. June 27, 1990. ● Memo: from Cook-Deegan to Leslie Fink, Elke Jordan. Two attached articles. 20 June 1990. ● Memo: from Marvin L. Auerback to Cook-Deegan. Article for California Pediatrician. May 27, 1990. ● Draft: “The Human Genome Project and Children of Tomorrow.” James Watson, Cook- Deegan. May 21, 1990. ● Memo: from Marvin L. Auerback to Cook-Deegan. Article for California Pediatrician about Human Genome Project. April 23, 1990. Cook-Deegan Box 12/28

● Article: “The Human Genome Project and Children of Tomorrow.” James Watson, Cook- Deegan. California Pediatrician Fall 1990. ● Memo: from Marvin L. Auerback to Cook-Deegan. Article in California Pediatrician. August 26, 1990. ● Memo: from Marvin L. Auerback to James Watson. Mapping the human genome. March 7, 1990. ● Magazine: California Pediatrician. Spring 1990.

OMNI Editorial

● Memo: from Cook-Deegan to Elke Jordan, Leslie Fink, Eric Juengst, James Watson. Status of manuscripts. July 12, 1990. ● Article: “First Word.” James D. Watson. March 23, 1990. (2 copies) ● Memo: from Cook-Deegan to Jim Watson. Oxford University reprint of OMNI piece. 17 September 1990. ● Fax cover sheet: from Cook-Deegan to Cathy Spenser via Richard Rosenberg. 6 March 1990. ● Memo: from Cook-Deegan to Elke Jordan, Leslie Fink, James Watson. Current draft of OMNI editorial. 20 February 1990. ● Fax cover sheet: from Cook-Deegan to Cathy Spenser c/o Richard Rosenberg. 14 March 1990. ○ Chapter 1: Summary ● Letter: from Robert Mangino to James D. Watson. September 12, 1990. ○ Request: from Oxford University Press to Omni Magazine to reproduce article “First Word.” James D. Watson. Large Fragment Report/Houston 12/89

● Memo: from Cook-Deegan to Tom Caskey, David Nelson, Maynard Olson, NCHGR staff. Attached draft summary of large fragment cloning workshop. 20 December 1989. ○ Report: “Houston Large Fragment Cloning Workshop.” December 12-14, 1989. DRAFT of December 19, 1989. ● Memo: from Cook-Deegan to Tom Caskey. Large Fragment Report author status. 23 January 1990. ○ List of authors: “Report of the Large DNA Insert Cloning Workshop.” Houston, Texas. December 12-14, 1989. ● Letter: from Cook-Deegan to Kristina Brubaker. 23 January 1990. ○ Report: “Report of the Large DNA Insert Cloning Workshop.” Houston, Texas. December 12-14, 1989. DRAFT of January 23, 1990. ● Memo: from Cook-Deegan to Jim Watson, Elke Jordan, Mark Guyer. Large fragment workshop report. 23 January 1990. ○ Letter: from Cook-Deegan to Kristina Brubaker. 23 January 1990. ○ Report: “Report of the Large DNA Insert Cloning Workshop.” Houston, Texas. December 12-14, 1989. DRAFT of January 23, 1990. ● Memo: from Cook-Deegan to Tom Caskey, David Nelson, Maynard Olson, NCHGR staff. Attached draft summary of large fragment cloning workshop. 20 December 1989. ○ Report: “Houston Large Fragment Cloning Workshop.” December 12-14, 1989. DRAFT of December 19, 1989.

Cook-Deegan Box 12/28

BYK

● Memo: from Cook-Deegan to Elke Jordan, Eric Juengst, Jim Watson. Very rough draft of short article for Judge Byk. July 6, 1990. ○ Report: “Special Programs on Ethical, Legal, and Social Implications of Genome Research: Structure and Rationale.” Cook-Deegan, Eric J. Juengst, Elke Jordan, James D. Watson ● Memo: from Cook-Deegan to Elke Jordan, Leslie Fink, Eric Juengst, James Watson. Status of manuscripts. July 12, 1990. ● Letter: from Judge C. Byk to Elke Jordan. 10 April 1990. ● Memo: from Cook-Deegan to Elke Jordan, Eric Juengst, Jim Watson. Very rough draft of short article for Judge Byk. July 6, 1990. ○ Report: “Special Programs on Ethical, Legal, and Social Implications of Genome Research: Structure and Rationale.” Cook-Deegan, Eric J. Juengst, Elke Jordan, James D. Watson. ● Letter: from Cook-Deegan to Judge Christian C. Byk. 15 August 1990. ● Letter: from Judge C. Byk to James D. Watson. 20 February 1990. ○ Handwritten note: from Judge Byk to Cook-Deegan. March 5, 1990. ● Memo: from Cook-Deegan to Jim Watson, Leslie Fink, Elke Jordan, Mark Guyer. Disposition of final manuscripts. 14 August 1990. FASEB

● Letter: from W.J. Whelan to James Watson. February 7, 1991. ● Draft: “Origins of the Human Genome Project.” James Watson, Cook-Deegan. May 22. For FASEB. ● Memo: from Cook-Deegan to Jorge Allende. FASEB Journal article on the history of the human genome project. 4 April 1990. ○ Letter: from Jorge E. Allende to Cook-Deegan. March 22, 1990. ○ Letter: from Jorge E. Allende to James Watson. March 22, 1990. ○ Letter: from Jorge E. Allende to James Watson. September 20, 1989. ● Report: “Origins of the Human Genome Project.” James Dewey Watson, Cook-Deegan. ● Memo: from Cook-Deegan to Elke Jordan, Leslie Fink, Eric Juengst, James Watson. Status of manuscripts. July 12, 1990. ● Memo: from Cook-Deegan to Jim Watson, Leslie Fink, Elke Jordan, Mark Guyer. Disposition of final manuscripts. 14 August 1990. ○ Report: “Origins of the Human Genome Project.” James Dewey Watson, Cook- Deegan. ● Memo: from Cook-Deegan to Jim Watson, Leslie Fink, Elke Jordan. Attached FASEB article. 24 August 1990. ○ Report: “Origins of the Human Genome Project.” James Dewey Watson, Cook- Deegan. ● Letter: from Cook-Deegan to William J. Whelan. 15 August 1990. ● Draft: “Origins of the human genome project.” James Dewey Watson, Cook-Deegan. FASEB. ● Letter: from W.J. Whelan to Review Author. April 1990. ○ Letter: from W.J. Whelan to Cook-Deegan and James Watson. July 27, 1990. ○ Notes: The FASEB Journal Information for Authors. July 1990. Cook-Deegan Box 12/28

○ Contents: Contents of Human Genome Initiative Issue. ○ Letter: from W.J. Whelan to Cook-Deegan and James Watson. July 27, 1990. ○ Notes: The FASEB Journal Information for Authors. July 1990. ○ Contents: Contents of Human Genome Initiative Issue. ○ Notes: The FASEB Journal State-of-the-Art Reviews Instructions to Authors. ○ Permission form: The FASEB Journal. Permission from author of publication. ○ Letter: from W.J. Whelan to Review Author. April 1990. ○ Letter: from Jorge E. Allende to Cook-Deegan. June 4, 1990. ■ Letter: from W.J. Whelan to Review Author. April 1990. ○ Draft: “Origins of the Human Genome Project.” James Dewey Watson and Cook-Deegan. ○ Permission form: The FASEB Journal. Permission from author of publication. ● Draft: “Origins of the Human Genome Project.” James Dewey Watson and Cook- Deegan. August 24, 1990. ● Draft: “Origins of the Human Genome Project.” James Dewey Watson and Cook- Deegan. August 24, 1990. FASEB Journal. ● Memo: from Cook-Deegan to Jim Watson, Leslie Fink, Elke Jordan. Attached FASEB article. 24 August 1990. ● Letter: from W.J. Whelan to Author. “Origins of the Human Genome Project” accepted for publication in The FASEB Journal. October 8, 1990. ● Notes: Proofreaders’ Marks. ● Letter: from W.J. Whelan to Cook-Deegan. “Origins of the Human Genome Project” accepted for publication. October 8, 1990.

Assoc. Academic Health Center, Talk on Human Genome 10/4/90, Naples, FL, MS for edited volume (replaced JD Watson at last minute)

● Letter: from Roger J. Bulger and Donald Harrison to Cook-Deegan. October 16, 1990. Private NIH

● Article: “Budget Plan Would Privatize National Institutes of Health.” Robert Pear. NY Times. Dec. 16. ● Article: “Privatization for NIH?” Nature vol. 330. 24/31 December 1987. ● Article: “Flap over privatizing NIH.” Merit C. Kimball. Health Week vol. 1 no. 10. December 23, 1987.

Cook-Deegan Box 12/28

DAC meeting, NIH, Oct. 1986

● Note: from Ruth L. Kirschstein to Drs. Rall, Raub, Moskowitz, Beaven, DeVita, Lindberg. July 10, 1986. ● Handwritten notes. ● Memo: from Rachel E. Levinson to Drs. Wyngaarden, Moskowitz, Alexander, Lindberg, Kirschstein, Palade, Pickett. Next Meeting of the Working Group. November 14, 1986.\ ● Summary: Follow-up to October 16-17, 1986 Meeting of the Advisory Committee to the Director, NIH. November 6, 1986. ● Memo: from James B. Wyngaarden to Drs. Alexander, Kirschstein, Lindberg, Palade, Pickett, cc Dr. Moskowitz, Ms. Levinson. Follow-up to the October 16-17 Meeting of the Advisory Committee to the Director, NIH. November 3, 1986. ● Letter: from Ruth L. Kirschstein to Charles DeLisi. July 9, 1986. ● Note: from Rachel to Cook-Deegan. th ● Report: The Human Genome. Proceedings of the 54 Meeting of the Advisory Committee to the Director, National Institutes of Health, October 16-17, 1986. Prepared by the Office of Program Planning and Evaluation. March 1987. ● Summary: Follow-up to October 16-17, 1986 Meeting of the Advisory Committee to the Director, NIH. December 16, 1986. ● Memo: from Director, NIGMS to Director, NIH. Sequencing the Human Genome. July 2, 1986. ○ Summary: Follow-up to October 16-17, 1986 Meeting of the Advisory Committee to the Director, NIH. November 6, 1986. ■ Summary: of Meeting with Dr. Akiyoshi Wada. November 11, 1986. NIH program announcements, etc.

● Letter: from Irene Anne Eckstrand to Cook-Deegan. June 4, 1987. ○ Report: Ongoing Program Announcements (PAs) ● Letter: from Mark S. Guyer to Cook-Deegan. July 20, 1988. ● Report: Ongoing Program Announcements (PAs) ● Letter: from Mark S. Guyer to Cook-Deegan. November 3, 1987. ○ Report: Characterization of the Genomes of Humans and Model Organisms. ● Letter: from Irene Anne Eckstrand to Cook-Deegan. December 7, 1988. ○ Report: Ongoing Program Announcements. Vol. 17, no. 36, November 4, 1988. ● Report: NIH Guide Supplement for Grants and Contracts. Vol. 17, no. 39, Nov. 25, 1988. ● Report: Notices. Vol. 17, no. 22, July 1, 1988. ● Report: NIH Guide for Grants and Contracts. Vol. 18, no. 7, March 3, 1989. ● Report: National Center for Human Genome Research: New Announcements from the Human Genome Program at NIH. July 21 and 28, 1989. ● Report: National Center for Human Genome Research: New Announcements from the Human Genome Program at NIH. ○ Report: Ongoing Program Announcements. Vol. 18, no. 36, October 13, 1989. ○ Report: National Research Service Awards in Genomic Analysis. Vol. 18, no. 25, July 21, 1989. ■ Report: Technology Development, Mapping, and DNA Sequencing in Support of the Human Genome Program. Vol. 18, no. 26, July 28, 1989. Cook-Deegan Box 12/28

○ Report: Program Announcement: Ethical, Legal and Social Implications of the Human Genome Initiative. January 1990. ○ Report: Initiatives for Underrepresented Minorities in Biomedical Research. ■ Report: NIH Guide for Grants and Contracts. Vol. 18, no. 14, April 21, 1989. Reston meeting, 29 Feb.-1 Mar. 88. NIH ad hoc committee on complex genomes

● Article: “NIH gearing up to tackle the human genome.” Joseph Palca. Nature vol. 332. 10 March 1988. ● Article: “Watson May Head Genome Office.” Leslie Roberts. Science vol. 240. 13 May 1988. ● Article: “More actors apply for parts.” Joseph Palca. Nature vol. 323. 23 October 1986. ○ Article: “Doubts about Department of Energy.” Joseph Palca. Nature vol. 323. 23 October 1986. ● Report: Ad Hoc Program Advisory Committee on Complex Genomes. Reston, Virginia. February 29-March 1, 1988. NIH History

● Article: “NIH: a century of science for health.” Nature vol. 329. 22 October 1987. ○ Article: “Dilemmas of decision-making.” Robert Q. Marston. ○ Article: “Challenge of change in biology.” Donald S. Fredrickson. ● Article: “NIH: The Good Old Days.” Barbara J. Culliton. 23 June 1989. ● Article: “The National Institutes of Health: Some Critical Years, 1955-1957.” James A. Shannon. Science vol. 237. ● Article: “NIH Origins: An Attic Laboratory on Staten Island.” Science for Health. January 1987. ● Photocopied photographs from an article. ● Article: “Tour of Duty: A Medical Academic in the White House.” Bernadine P. Healy. Harvard Medical Alumni Bulletin vol. 61 no. 4. Spring 1988. ● Article: “Taking the Pulse of the National Institutes of Health.” Eugene Garfield. The Scientist July 11, 1988. Livermore genome efforts

● Report: “Developing an Ordered Cosmid Map of Human Chromosome 19.” A.V. Carrano, E.W. Branscomb, P.J. de Jong, and B. Watkins. Hayashibara Workshop on Automated and High Speed DNA Sequencing, Okayama, Japan 7-10 July 1987. ● Report: “Toward a Physical Map of Chromosome 19.” Anthony Carrano, Elbert Branscomb, Pieter de Jong, Bruce Watkins, Harvey Mohrenweiser. ● Notes: Trip Log Day 14. ● Letter: from Elbert Branscomb to Cook-Deegan. June 1, 1989. ● Report: “Physical Mapping of DNA: An Overview of the DOE Program.” Anthony V. Carrano. ● Notes: Cold Spring Harbor Meeting on Genome Mapping and Sequencing. April 27- May 1, 1988. Los Alamos, general

● Empty

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Los Alamos, genome efforts

● Notes: Trip Log Day 2. 5 January 1987. Los Alamos, New Mexico. ● Article: “DoE provides funds for human genome sequencing.” Marcia Barinaga. Nature vol. 331. 14 January 1988. ● Classifieds: Human Genomics. Nature vol. 331. 18 February 1988. ● Article: “Chromosomes: The Ends in View.” Leslie Roberts. Science vol. 240. 20 May 1988. ● Handwritten notes. ● Notes: Larry Deaven. ● Notes: Meeting Re: Los Alamos Work on Human Genome. January 18, 1989. ● Report: “Physical mapping of Human Chromosomes by Repetitive Sequencing Fingerprinting.” R.L. Stallings, D.C. Torney, C.E. Hildebrand, J.L. Longmire, L.L. Deaven, J.H. Jett, N.A. Doggett, and R.K. Moyzis. ● Photograph: chromosomes. ● Letter: from Robert K. Moyzis to Cook-Deegan. February 27, 1991. ● Notes: Cold Spring Harbor Meeting on Genome Mapping and Sequencing. April 27- May 1, 1988. Cook-Deegan Box 13/28

Folder 1 - Ripples Cancer and DNA-Dulbecco editorial; National Fe March 86 ● Article- “Is megasequencing madness?” by Peter Newmark. Nature Vol. 323 25 September 1986 ● Copy of pages from Scientific American May 1987 ● Article- “DoE provides funds for human genome sequencing” by Marcia Barinaga. Nature Vol. 362 2 April 1987 ● Article- “Human genome sequencing plan wins unanimous approval in US” by Joseph Palca. Nature Vol. 326 2 April 1987 ● Article- “Earmarking at DOE, DOD rolls on” by Mark Crawford. Science Vol. 239 22 January 1988 ● Article- “Labs struggle to promote spin-offs” by Daniel Charles. Science Vol 240 13 May 1988 ● Letter- “Human genome sequencing” by Robert L. Sinsheimer. Science Vol 233 ● Article- “Quest for genome could begin here” by Cheryl Pellerin. Washington Technology July 9, 1987 ● Article- “Agencies vie over human genome project” by Leslie Roberts. Science Vol. 237 31 July 1987

Folder 2 - NIH Policies ● Brochure- Guide to NIH ● Letter from Ruth L. Kirchstein to Director NIH. July 2, 1986. About first meeting of committee to assess the role of NIH in HGP ● Note from Ruth L. Kirchstein to Dr. Rall, Dr. Raub, Dr. Moskowitz, Dr. Beaven, Dr. DeVita, Dr. Lindberg. July 10, 1986. Travel arrangements ● Article- “Pasteur Institute celebrates centenary- and so do NIH” NA. Nature Vol. 329 15 October 1987 ● Article- “NIH gearing up to tackled the human genome” by Joseph Palca. Nature Vol. 322 10 March 1988. ● List of Special Study Section Human Genome Applications March 24-25, 1988. Attached is handwritten note from Cheryl (?) to CD ● Letter from Jane L. Peterson and James C. Cassatt to GenBank Sponsor’s Forum- Inviting CD to GenBank Advisory Committee Meeting November 15 1988. Attached is agenda ● Article- “Agencies anxious as US Congress fixes deadline for 1988 budget” by Joseph Palca. Nature Vol. 329 22 October 1987. ● Poorly photocopied article from The Scientist. No title/date ● List of Current Activities Supported by the Division of Research Resources in the Molecular Biology/Genetics ● Table- NIH Support for Mapping and Sequencing Units for funding: million dollars fiscal year 1986 Units for projects: number of projects supported, with hand written table attached ● Memo from Irene A. Eckstrand to Interested Staff. December 16, 1987. Reprints from “Genomic Analysis Seminar Series” ● Agenda- Advances in Genomic Analysis October-November 1987 ● Booklet- NIH Information Index 1988 ● Article- “Bionet bites the dust” by JLM, Science Vol. 245 Cook-Deegan Box 13/28

● Article- “Gene study excites researchers” by Nancy Meyers. Washington Technology September 22, 1988 ● Text of remarks by the President at the Annual Meeting of the National Academy of Sciences, April 23, 1990 ● Projector transparency “NIGMS/Genome Budget” ● Article- “Room at the top” by Joseph Palca Science Vol 246 ● Memo from Ruth L. Kirchstein. July 20, 1987. Proposed legistation: consortium of federal agencies regarding mapping and sequencing of the human genome ● Memo from Ruth L. Kirchstein. August 1987. About legislation on the human genome ● Tables- Types of research applications reviews by the Special Review Section (R01, R29, K04, and R13), Volume of the competing applications received by the drug referral section and reviewd by PHS, NIH budget at the a glance ● Article- “New genome centers” NA. Science Vol. 251 ● Article- “Genome center grants chosen” by Leslie Roberts. September 28, 1990 ● Article- “Tough times ahead for the genome project” by Leslie Roberts. Science Vol. 248 29 June 1990 ● Article- “House prunes genome budget” NA. Science Vol. 249 ● Letter- “The genome project: pro and con” by Maurice S. Fox, Boris Magasanik, Ethan R. Signer, Frank Solomon, Martin F. Gellert, James E. Haber. Science Vol 247 ● Article- “Genome research on disease by disease basis is inefficient and extremely expensive, Jordan says”. NA. Life Sciences July 27, 1990 ● Article- “Sequencing technology for the Human Genome Initiative”. NA. Molecular Genetics Today. No date ● The Blue Sheet. Vol. 33, No. 15, April 11, 1990 ● Memo from Legislative Intern to M/R. Hearing on Biomedical Research March 28, 1990 ● Copy of page from The Blue Sheet. “Human genome five-year plan releases is ‘imminent’ NIH advisory council official tells biotech meeting” April 4, 1990. ● Letter from Sukanay C. Sundaram, W. Stephen Waters, Amir Abouelnaga, Paul G. Gabuzda to Jane Peterson. April 30, 1990. Thanking her for responding to survey questionnaire. Attached is info about survey ● Interview summary- Interview with Elke Jouran March 6, 1990 ● Letter from James F. Decker to James Wyngaarden. No date. About making a joint advisory committee ● Statement Regarding Legislation on Characterizing the Human Genome. 8/87 ● Gene Mapping/Sequencing- LAR 87- ACL788 ● Meeting- May 5, 1987 “Subcommittee on Characterization of Complex Genomes, Domestic Policy Council”- Questions to be asked and discussed ● Letter- No sender, to J. Bennett Johnston. No date. About S. 1480 ● Memo from Irene A. Eckstrand. February 10, 1987. Notes on the Meeting of the OHER Advisory Committee Subcommittee on the Human Genome February 5-6, 1987 ● Letter from Elaine Twillman to Theresa Myers. November 19, 1987. Attached is copy of NIH organization chart Cook-Deegan Box 13/28

● Press Release March 1987 ● List of NIH Senate and House Authorization ● Memo from Irene A. Eckstrand to CD- August 27, 1987. About National Institute of General Medical Sciences sponsoring a series of seminars. Attached is agenda ● NIH Investment in Genomics Research ● Gene Mapping for Fy 89 ● The Department of Energy National Laboratory Cooperative Research Initiatives Act (S. 1480) ● The Biotechnology Competitiveness Act of 1987 (S. 1966) ● Human Genome Initiative ● Unlabelled document- Conversation between Dr. Wyngaarden and Senator Mikulski ● Memo from Jay Moskowitz to Deputy Assistant Secretary for Health. April 13, 1988. PHS planning. Attaches is NIH response to questions following planning session with Dr. Windom March 22. ● Letter from Paul DelPonte to CD- February 12, 1990. Attached is testimony of Health and Human Services Secretary Louis Sullivan on the 1991 Budget Feburary 8, 1990 ● The NIH Record. January 9, 1990 ● National Institutes of Health- Activities related to mapping and sequencing the human genome 2/836/87 ● National Institutes of Health- Activities related to mapping and sequencing the human genome. 5/87

Folder 3 - HHMI ● Agenda- Howard Hughes Medical Institute (HHMI)Genome Meeting February 15, 1986 ● Article- “Howard Hughes Medical Institute and its role in genomic activities” by George F. Cahill Jr. and Diane R. Hinton. Genomics 5 1989 ● Article- “Hughes money talks volumes” by Tim Beardsley. Nature Vol. 323 30 October 1986 ● Booklet- The State of the Institute- A Report to the Trustees of the Howard Hughes Medical Institute ● Booklet- Mary Woodard Lasker Center for Health Research and Education ● Howard Hughes Medical Institute Thirtieth Anniversary Report ● Article- “Scientists, policy-makers take first steps toward mapping the sequences of all the chemical units in human genes” NA. No source ● Fig F-2- Howard Hughes Medical Institute Genomics Resources flow chart ● Article- “Perpich to head new Hughes program” by Barbara J. Culliton. Science (?) April 10, 1987 ● Letter from Laura A. Kumin to CD October 1, 1987. OTA report on mapping the human genom/Chapter 5 ● Chapter 5- Section Concerning the Howard Hughes Medical Institute ● Article- “Hughes Institute opens new grant program” by Kathleen Teltsch. NYT October 6, 1987 Cook-Deegan Box 13/28

● Booklet- An Exceptional Opportunity for Research Careers in Medicine 1988-89. A joint project of the Howard Hughes Medical Institute and the NIH ● Article- “Hughes Institute gives US science education a boost” by Alun Anderson. Nature Vol 329. 15 October 1987 ● Letter from Laura A. Kumin to CD- December 18, 1987. Re- Additional comment concerning OTA draft report ● Article- “Hughes Institute woos science’s best and brightest” by Michael Schrage and Nell Henderson. WP August 4, 1986 ● Booklet- Howard Hughes Medical Institute Summer 1987 ● Article- “Hughes will spend extra $500-million on grants to science over next 10 years” No date, source ● The Washington Post Weekly Journal of Health, Science and Society. Lead story on Howard Hughes Medical Institute. December 13, 1988 ● Article- “GM, Hughes settle stock fight” by Barbara J. Culliton. Science, March 10, 1989 ● Article- “Donald Fredrickson: spending Hughes’ legacy”. NA. The Scientist Janunary 26, 1987 ● Article- “Hughes settles with IRS” by Barbara J. Culliton. Science Vol 235 ● Article- “HHMI: bitterness remains” by Ron Cowen. No date, source ● Article- “Fredrickson’s bitter end at Hughes” by Barbara J. Culliton. Science June 12, 1987 ● Article- “Medical institute shaken in furor over its president” Philip M. Boffey. No date, source ● Handwritten notes ● Letter from Laura A. Kumin to CD- Wants her outline back ● OTA Presentation- 6/26/87 Topic- Collaboration on human genome projects ● Article- “New research” No author. AP. ● Interview with George Cahill July 26, 1988 ● Folder labeled Human Genome ○ Left hand side ■ Information Handling and Storage July 1986 ■ Handwritten notes ■ Seating Arrangement chart ● Right hand side ○ Agenda for Informational Forum on the Human Genome 7/23/86 ○ Handwritten notes ○ Article- “Shifting sentiments over sequencing the human genome” by Roger Lewin. Science, Vol 233 8 August 1986 ○ Report- Howard Hughes Medical Institute and its role in genomic activities by George F. Cahill Jr. and Diane R. Hinton ○ Handwritten notes ○ Handwritten letter from Geq? To CD 3/1/91 Attached to Report entitled “The Odd Legacy of Howard Huges

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Folder 4 - HHMI planning meeting, NIH, July 1986 ● Article- “Shifting sentiments over sequencing the human genome” by Roger Lewin. Science Vol. 233 ● Letter from Maya Pines to CD. September 9, 1988. About scientists passing notes to each other at July 23 Forum on the Human Genome. Attached is her draft of report to trustees “Shall we grasp the opportunity to map all human genes and create a “human gene dictionary”?” ● Interview with Charles Scriver September 19, 1988 ● Booklet- Mapping the Human Genome by Maya Pines

Folder 5 - Santa Fe, March 1986- post it note on outside says BCD 13 ● Article- “Mapping the human genome: automating DNA sequencing key” by Leonard Baskin. No date, source

Folder 6 - Santa Fe II, January 1987 ● Documents inside a clear folder ○ Cover page- January 6-9 1987 “Exploring the role of robotics and automation in decoding the human genome” ○ Letter from Dan W. Knobeloch to Invitee. Deceber 3, 1986. Invitation. Attached is agenda ○ Santa Fe tourist brochure ○ Envelope from Hilton ○ Letter from Tony Beugelsdijk, Ed Hildebrand, Mark Bitensky to CD. October 24, 1986. About conference ○ Agenda for conference ● Letter from Charles DeLisi to CD. November 12, 1986. About conference ● Agenda ● List of participants ● Handwritten notes ● Page of an unknown interview January 1987 ● Report- Genome Sequencing Workshop March 3&4, 1986. ● Booklet- Department of Energy Office of Health and Environmental Research “Sequencing the Human Genome”- Summary Report of the Santa Fe Workshop, March 3-4, 1986

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Folder 1 - Santa Fe 87- DeLisi gets his line, machines on display. January to April 1987 ● Health and Environmental Research Advisory Committee- Subcommittee on Human Genome list of members ○ Folder inside Folder 1-HERAC/Genome subcommittee ■ Tentative agenda Meeting of the U.S. Department of Energy Health and Environmental Research Advisory Committee November 5, 1986 ■ “Human Genome Program: Recent Accomplishments and Significance:” ■ Hand written notes ■ Agenda- Meeting of the Health and Environmental Research Advisory committee, March 24, 1987 ■ List of participants for above conference ■ Members of advisory committee ■ Members of subcommittee ■ Divider labeled human genome ■ Letter from I. Tinoco Jr. to Committee Members. November 10, 1986. List of questions for participants ■ Outline of general principles based on November 5, 6 1986 meeting of Subcommittee on Human Genome. An abstract of the meeting with some editorial bias. By Mort Mendelsohn November 10, 1986 ■ Letter from Alvin W. Trivelpiece to Mort Mendelsohn. Asking for advice ■ Draft report on the Human Genome Initiative ■ Draft Biotechnology Report Submitted by the Subcommittee on Biotechnology ■ Letter from Alvin W. Trivelpiece to Mort Mendelsohn. Tell him about potential major new initiative in human genome sequencing ■ Memo from George F. Cahill to Donald S. Fredrickson. November 7, 1986. Re: Subcommittee on Human Genome of the HERAC of DOE ■ List of subcommittee members ■ Divider labeled biotechnology ■ List of subcommittee members ■ The Department of Energy National Laboratory Cooperative Research Initiatives Act (S. 1480)

Folder 2 - Genes and the bomb- genetic mutations at Alta meeting to DeLisi 1983- 1986 ● Article- “Measurement of low levels of x-ray mutagenesis in relation to human disease” by Charles Waldren, Laura Correlle, Marguerite A. Sognier and Theodore T. Puck. Proc. Natt. Acad. Sci. USA Vol. 83 July 1986 ● Article “Long-term effects on health from bomb exposure remain a mystery” by Deborah S. Pinkney. AMN Cook-Deegan Box 14/28

● Article- “Search for mutations altering protein charge and/or function in children of atomic bomb survivors: final report” by James V. Neel, Chiyoko Satoh, Kazuaki Goriki, Jun-ichi Asakawa, Mikio Fujita, Norio Takahashi, Takeshi Kageoka and Ryuji Hazama. Am. J. Hum. Genet 42 1988 ● Article- “Progress in biophysics and molecular biology” by D. Noble and T.L. Blundell. Prog. Biophys. Molec. Bio. Vol 50 1987 ● Article- “Invited review: prevalence of genetic and partially genetic diseases to man and the estimation of genetic risks of exposure to ionizing radiation” by K. Sankaranarayanan. Am. J. Hum. Genet. 42 1988 ● Article- “2 experiences with effects of bomb”. American Medical News August 5, 1988 ● Article- “Shifting sentiments over sequencing the human genome” by Roger Lewin. Science Vol 233 8 August 1986 ● DNA Banking and Analysis: Points to Consider by the Ad Hoc Committee on DNA Technology, American Society of Human Genetics

Folder 3 - Putting Santa Cruz on the map. Santa Cruz workshop May 1985 ● Letter from F. Sanger to Harry Noller. November 22, 1984. About sequencing ● Letter from Harry F. Noller to Bart Barrell. April 16, 1985. About position paper. Attached is list of participants in Human Genome Institute Workshop. Revised 4/85 ● Letter from Robert L. Sinsheimer to CD. July 28, 1989. Attached is Sinsheimer’s thoughts on Santa Cruz Workshop May 1989 ● Letter from Wally Gilbert to Robert Edgar. May 27, 1985. His thoughts on Human Genome Institute ● Letter from Harry Noller to F. Sanger. October 29, 1984. About sequencing human genome at Santa Cruz

Folder 4 - Marvelous Machines Lee Hood, Charles Cantor, Ron Davis, formation 1980-1985 ● Memo from CD to Lee Hood, Tim Hunkapiller, Lloyd Smith and Mike Hunkapiller. March 8, 1991 RE: sequences chapter draft ● Sequences chapter draft ● Article- “Primary structure of rate cardiac beta-adrenergic and muscarinic cholingeric receptors obtained by automated DNA sequence analysis: further evidence for a multigene family” by Jeannine Gocayne, Doreen A. Robinson, Michael G. Fitzgerald, Fu-Zon Chung, Anthony R. Kerlavage, Klaus-Ulrich Lentes, Josephine Lai, Cheng-Dian Wang, Claire M. Fraser and J. Craig Venter Proc. Natl. Acad. Sci USA Vol. 84 December 1987 ● Handwritten notes ● Article- “Automated DNA sequence analysis” by Lloyd M. Smith. Science Vol. 235 27 February 1987. ● Article- “Automated DNA sequencers” by Pamela Knight. Bio/Technology Vol 6. September 1988 ● Article- “A system for rapid DNA sequencing with fluorescent chain-terminating dideoxynucleotides” by James M. Prober, George L. Trainor, Rudy J. Dam, Frank Cook-Deegan Box 14/28

W. Hobbs, Charles W. Robertson, Robert J. Zagursky, Anthony J. Cocuzza, Mark A. Jensen, Kirk Baumeister ● Article- “Human genome sequencing: is the technology ready?” by J. Craig Venter. Applied Biosystems Inc. No. 484 ● Article-“Product options increase in DNA sequencing arena” by Lloyd M. Smith. The Scientist July 25, 1988. ● Article- “Battle of the DNA sequencers” by Edward Chait and Guy Page. Nature Vol 333 2 June 1988 ● Article- “Speed-reading the genetic code” by L. Davis. No source. June 28, 1986 ● Article- “DNA and RNA sequence determination based on phosphorothioate chemistry” by Gerald Gish and Fritz Eckstein. Science June 10, 1988 ● Article- “Sequencing proteins from acrylamide gels” by T.E. Kennedy, K. Wager- Smith, A. Barzilai, E.R. Kandel and J.D. Swean. Nature Vol. 336 December 1, 1988 ● Article- “UAB getting newly developed genetic decoder” No author. AM ● Article- “Automated DNA sequence analysis” by Lloyd Smith. ScienceINT 12/3/86 ● Article- “Robots emerge as trusty workhorses in many science labs” by Mike Spear. The Scientist September 19, 1988 ● Article- “Robotics in the human genome project” by Dan W. Knobleloch. Bio/Technology Vol 5 December 1987 ● Article- “Automated sequence reading”by John West, Alexander Zrolka, Stephen Ferris and Anne Stevens. No source. May 1988 ● Page of a trip log. Day 4 ● The Medical Business Journal. Vol 4. No. 7. April 15, 1988 ● Complete trip log. January 8, 1987. Santa Fe ● Article-“DNA sequencing goes automatic” by Roger Lewin. Science Vol. 233 ● Article- “Why do the human genome project?” by Robert G. Martin. NIHAA Update Autumn 1989 ● Memo from Robert G. Martin to Chief, Receptor Biochemistry and Molecular Biology Section. February 22, 1990 ● Report- “The Genome Project: The Opportunity of the Century for Biology and Medical Sciences” by J. Craig Venter, NIHAA Forum

Folder 5 - The Holy Grail- Walter Gilbert, May 1985-March 1986 ● Article- “Proposal to sequence the human genome stirs debate” by Roger Lewin. Science Vol. 232 27 June 1986 st ● Page of Flanagan’s Version: A Spectator’s Guide to Science on the Eve of the 21 Century by Dennis Flanagan. Alfred A. Knopf, New York, 1988 ● Photocopy of Kin Arthur and the Grail: The Arthurian Legends and their Meaning by Richard Cavendish. Weidenfeld and Nicolson 1987

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Folder 6 - Companies in Instrumentation ● Brochure for Applied Biosystems’ DNA Synthesizer ● Brochure about Applied Biosystems’ 1987 Annual Report ● Brochure about Applied Biosystems’ DNA Synthesizer ● Brochure for IBM’s Powerful Pair ● Brochure about IBI/Pustell Super Sequencing System ● Molecular Biology Reports Vol. 1 No. 2 September 1987 ● Materials about BioRad Laboratories ● Brochure about The Acugen System ● Biosystems Reporter Issues Number 8, May 1990

Folder 7 - DNA Sequencing newsletter, Salser, UCLA ● DNA Core Facilities Newsletter. Issue 1, Vol 1, May 1988 ● UCLA Recombinant DNA Newletter. Vol. 1, No. 3- January 28, 1988 ● Questionnaire and Newsletter Mailing List form ● Letter from Winston Salser to Colleague. No Date. About UCLA Newsletter

Folder 8 - PCR ● Article- “Dupont battles with Cetus” by Christine McGourty Nature Vol 342, November 2, 1989 ● Article-“Cetus battles with Dupont” by Diane Gershon. Nature Vol. 343, 25 January 1990 ● Article- “The unusual origin of the polymerase chain reaction” by Kary B. Mullis. Scientific American April 1990 ● Article- “Democratizing the DNA sequence” by Tim Appenzeller. Science Vol. 247 ● Article- “Biotech nightmare: does Cetus on PCR?” by Marcia Barinaga. Science Vol 251 15 February 1991 ● Article- “PCR origins (letter)” by Jeffrey S. Price. Nature Vol 342 7 December 1989 ● “Article- “The molecule of the year” by Daniel E. Koshland Jr. Science Vol 246 22 December 1989 Number 4937 ● Article- “Ancient bone DNA amplified” by Erika Hagelberg and Bryan Sykes. Nature Vol 342 30 November 1989 ● Article- “Specific DNA amplification” by H.A. Erlich, D.H. Gelfand and R.K. Saiki. Nature Vol 331 4 February 1988 ● Article- “Primer-directed enzymatic amplification of DNA with a termostable DNA polymerase” by Randall K. Saiki, David H. Gelfand, Susanne Stoffel, Stephen J. Scharf, Russell Higuchi, Glenn T. Horn, Kary B. Mullis, Henry A. Erlich. Science Vol 239, January 29, 1988 ● Article- “Polymerase chain reaction” No date, no source ● Article- “Methods and materials” No author. The Journal of NIH Research. February 1991 Vol 3.

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Folder 9 - Yeast Olsun, Botstein, Davis 1974-78 ● Computer printouts from National Library of Medicine’s Elhill Retrieval System. Info on Olsun ● Article- “The role of heteroduplex correction in gene conversion in saccharomyces cerevisiae” by Douglas K. Bishop, Marsha S. Williamson, Seymour Fogel, Richard D. Kolodner. Nature Vol 328 23 July 1987 ● Article- “Cloning of large segments of exogenous DNA into yeast by means of artificial chromosome vectors” by David T. Burke, Georges F. Carle, Maynard V. Olsun. Science Vol 236, May 15, 1987 ● Article- “Genome linking with yeast artificial chromosomes” by Alan Coulson, Robert Waterston, Jane Kiff, John Sulston and Yuji Kohara. Nature Vol 335 8 September 1988 ● Article- “High-altitude walking with YACs” by Kim Nasmyth and John Sulston. Nature Vol 328, 30 July 1987 ● Letter from Wanda Warddell to CD- August 30, 1990. About Freedom of Information request to the National Institute of General Medical Sciences ● Fax from CD to Bob Waterston and John Sulston. March 1, 1991. Attached is report entitled “Yeast and Worms”

Folder 10 - Physical mapping, technical background ● Computer printouts from National Library of Medicine’s Elhill Retrieval System. Info on Sulston ● Addresses of Olsun and Sulston ● Article- “Genetics of development elucidated by nematodes” by Philip Anderson and Judith Kimble. Nature Vol. 328 16 July 1987 ● Article- “Genome mapping goal now in reach” by Leslie Roberts. Science Vol 244, 28 April 1989 ● Article-“The worm project” by Leslie Roberts. Science Vol. 248, 15 June 1990 ● Article-“Constructing of a general human chromosome jumping library, with application to cystic fibrosis” by Francis S. Collins, Mitchell L. Drumm, Jeffery L. Cole, Wendy K. Lockwood, George F. Vande Woude, Michael C. Iannuzzi. Science Vol 235 27 February 1987 ● Article “Construction and use of human chromosome jumping libraries from NotI-digested DNA” by Annemarie Poustka, Thomas M. Pohl, Denise P. Barlow, Anna-Marie Frischauf and Hans Lehrach. Nature Vol 325 22 January 1987 ● Article- “Linkage, physical mapping, and DNA sequence analysis of pseudoautosomal loci on the human X and Y chromosomes” by David C. Page, Kristina Bieker, Laura G. Brown, Sean Hinton, Mark Leppert, Jean-Marc Lalouel, Mark Lathrop, Minna Nystrom-Lahti, Albert de la Chapelle and Ray White. Genomics 1 1987 ● Article-“New tricks tame megabase DNA fragments” by Douglas McCormick. Bio/Technology Vol 4, December 1986 ● Slip of paper about work of Fred Blattliner ● Slip of paper about work of Alan Coulson ● Slip of paper about work of Hans Lehrach Cook-Deegan Box 14/28

● Report- “Physical Mapping Review” by Frank H. Ruddle, Kevin L. Bentley, Anne Ferguson-Smith ● Article- “Restriction endonucleases for pulsed field mapping of bacterial genomes” by Michael McClelland, Robert Jones, Yogesh Patel and Micahel Nelson. Nucleic Acids Research Vol. 15. No 15, 1987 ● Report of Workshop- Nomenclature for physical mapping of complex genomes, August 1989

Folder 11 - Hemoglobinopathies ● Article-“The risks of sickle-cell trait (letter)” by Louis W. Sullivan. The New England Journal of Medicine September 24, 1987 ● Article- “Sickle-cell trait as a risk factor for sudden death in physical training” by John A. Kark, David M. Posey, Harld R. Schumacher, Charles J. Ruehle. The New England Journal of Medicine Vol. 317, No. 13, September 24, 1987 ● National Institutes of Health Consensus Development Conference Statement Vol. 6, No. 9 April 6-8, 1987

Folder 12 - Hemochromatosis ● Trip Log day 14 ● Article- “Inheritance of hemochromatosis linkage to HLA” by G.E. Cartwright, M. Skolnick, D.B. Amos, C.Q. Edwards, K. Kravitz and A. Johnson. Reprinted from the Transactions of the Association of American Phsicians Vol. XCi, 1978 ● Article- “Prevalence of hemachromatosis among 11,065 presumably healthy blood donors” by Corwin Q. Edwards, Lina M. Griffen, David Goldgar, Charles Drummond, Mark H. Skolnick and James P. Kushner. No date, no source ● Article- “Genetic linkage between hereditary hemochromatosis and HLA” by K. Kravitz, M. Skolnick, C. Cannings, D. Carmelli, B. Baty, B. Amos, A. Johnson, N. Mendell, C. Edwards and G. Cartwright. Am J Hum Genet 31 1979 ● Article- “Hereditary hemochromatosis: analysis of laboratory expression of the disease by genotype in 18 pedigrees” by Mary M. Dadone, James P. Kushner, C.Q. Edeards, D.T. Bishop and Mark H. Skolnick. Reprinted from American Journal of Clinical Pathology Vol 78, No 2. August 1982

Folder 13 - Duchenne muscular dystrophy incl. Lou Kunkel correspondence ● Letter from Louis M. Kunkel to CD- November 24, 1987. ● Printout of Elhill System info ● Article - “Subcelluar fractionation of dystrophin to the triads of skeletal muscle” by Eric P. Hoffman, C. Michael Knudson, Kevin P. Campbell and Louis M. Kunkel. Nature Vol 330 24/31 December 1987 ● Article-“The missing link in DMD” by Clarke R. Slater. Nature Vol 330 24/30 December 1987 ● Article- “Preferential deletion of exons in Duchenne and Becker muscular dystrophies” by S.M. Forrest, G.S. Cross, A. Speer, D. Gardner-Medwin, J. Burn and K.E. Davies. Nature Vol 329 15 October 1987 Cook-Deegan Box 14/28

● Article- Article - “Subcelluar fractionation of dystrophin to the triads of skeletal muscle” by Eric P. Hoffman, C. Michael Knudson, Kevin P. Campbell and Louis M. Kunkel. Nature Vol 330 24/31 December 1987 ● Article- “Dystrophin: the protein product of the Duchenne Muscular Dystrophy locus” by Eric P. Hoffman, Robert H. Brown, Jr. and Louis M. Kunkel. Cell Vol. 51 December 24, 1987 ● Article- “Analysis of deletions in DNA from patients with Becker and Duchenne muscular dystrophy” by Louis M. Kunkel (see article for list of co-authors) Nature Vol. 322 3 July 1986 ● Article- “Characterization of dystrophin in muscle-biopsy specimens from patients with Duchenne’s or Becker’s muscular dystrophy” by Eric P. Hoffman, Kenneth H. Fischbeck, Robert H. Brown, Margaret Johnson, Rosella Medori, John D. Loike, John B. Harris, Robert Waterston, Michael Brooke, Linda Specht, William Kupsky, Jeffrey Chamberlain, C. Thomas Caskey, Frederic Shapiro, and Louis M. Kunkel. The New England Journal of Medicine Vol 318, No. 21 May 26, 1988 ● Article- “Dystrophin: a triumph of reverse genetics and the end of the beginning” by Lewis P. Rowland. The New England Journal of Medicine. May 26, 1988 Vol. 318, No. 21 ● Article- “Further studies of gene deletions that cause Duchenne and Becker muscular dystrophies” by S.M. Forrest, G.S. Cross, T. Flint, A. Speer, K.J.H. Robson, K.E. Davies. Genomics 2, 1988 ● Article- “A deletion hot spot in the Duchenne Muscular dystrophy gene” by M.C. Wapenaar, T. Kievits, K.A. Hart, S. Abbs, L.A.J. Blonden, J.T. den Dunnen, P.M. Grootscholten, E. Bakker, Ch. Verellen-Domoulin, M. Borrow, G.J.B. van Ommen, and P.L. Pearson. Genomics 2, 1988 ● Article- “Localizing the gene product” by Kurt G. Beam. Nature Vol. 333 30 June 1988 ● Article- Further studies of gene deletions that cause Duchenne and Becker muscular dystrophies” by S.M. Forrest, G.S. Cross, T. Flint, A. Speer, K.J.H. Robson, K.E. Davies. Genomics 2, 1988 ● Article- “A deletion hot spot in the Duchenne Muscular dystrophy gene” by M.C. Wapenaar, T. Kievits, K.A. Hart, S. Abbs, L.A.J. Blonden, J.T. den Dunnen, P.M. Grootscholten, E. Bakker, Ch. Verellen-Domoulin, M. Borrow, G.J.B. van Ommen, and P.L. Pearson. Genomics 2, 1988 ● Article-“Boston lab: small scale, grand achievement” by Karen Klinger. The Scientist June 27, 1988 ● Letter from Louis M. Kunkel to CD- February 22, 1988. Suggestions to article ● Article-“Direct detection of more than 50% of the Duchenne muscular dystrophy mutations by field inversion gels” by J.T. den Dunnen, E. Bakker, E.G. Klien Breteler, P.L. Pearson and G.J.B. van Ommen. Nature Vol 329 15 October 1987 ● Article- “Dystrophin: the protein product of the Duchene Muscular Dystrophy locus” by Eric P. Hoffman, Robert H. Brown, Jr. and Louis M. Kunkel. Cell Vol. 51, December 24, 1987 ● Article- “Surer dx of x-linked disease” No author. Medical World News August 24, 1987 Cook-Deegan Box 15/28

Folder 1 (Human Genetic disease, NOS) ● Article: Lawrence I. Grossman. (1990). Invited editorial: Mitochondrial DNA in sickness and in health. American Journal of Human Genetics, 46. ● Article: (Aug. 1990). The Human Genome. The Journal of NIH Research, 2. ● Article: Geoffrey Cowley. (April 30, 1990). The gene and the bottle. Newsweek. ● Article: H.J. Scrable, D.P. Witte, B.C. Lampkin, & W.K. Cavnee. (Oct. 15, 1987). Chromosomal localization of the human rhabdomyosarcoma locus by mitotic recombination mapping. Nature, 329. ● Article: John Todd, John Bell, & Hugh McDevitt. (Oct. 15, 1987). HLA-DQb gene contributes to susceptibility and resistance to insulin-dependent diabetes mellitus. Nature, 329. ● Report: Estimated incidence/ prevalence of disorders. ● Report: G.N. Burrow & T.F. Ferris. (1982). Medical Complications during pregnancy. ● Report: Guy Rouleau, Wladimir Wertelecki, Jonathan Haines, Wendy Hobbs, James Trofatter, Bernd Seizinger, Robert Martuza, Duane Superneau, P. Conneally, & James Gusella. (Sept. 27, 1987). Genetic linkage of bilateral acoustic neurofibromatosis to a DNA marker on chromosome 22. Nature, 329. ● Article: John Spencer. (Aug. 8, 1987). Perinatal listeriosis. British Medical Journal, 295. ● Article: Julien Mendlewicz, Serge Sevy, Huguette Brocas, Philippe Simon, Francois Charon, Gilbert Vassart & Sylviane Legros. (May 30, 1987). Polymorphic DNA marker on X chromosome and manic depression. The Lancet. ● News: (Nov. 3, 1987). ‘Map’ may aid treatment of inherited disorders by speeding hunt for genes. American Med News. ● Article: Huei-Jen Su Huang, Jiing-Kuan Yee, Jin-Yuh Shew, Phang-Lang Chen, Robert Bookstein, Theodore Friedmann, Eva Y.-H. P. Lee, & Wen-Hwa Lee. (Dec16, 1988). Suppression of the neoplastic phenotype by replacement of the RB gene in human cancer cells. ● Article: A. Law, S.C. Wallis, L.M. Powell, R.J. Rease, H.Brunt, L.M. Priestley, T.J. Knott, J. Scott, D.G. Altman, G.J. Miller, J. Rajput, & N.E. Miller. Common DNA polymorphism within coding sequence of apolipoprotein B gene associated with altered lipid levels. The Lancet. ● Article: Gerry Hill. (Dec. 1988). Smoking and lung cancer. Archive of Internal Medicine, 148. ● Article: R.I. Horwitz, L.F. Smaldone, & C.M. Viscoli. An ecogenetic hypothesis for lung cancer in women. Archive of Internal Medicine, 148. ● Article: Miranda Robertson. (Nov. 1989). False start on manic depression. Nature, 342. ● Article: D.J. Weatherall. (Jan. 1990). Mice, men and sickle cells. Nature, 343. ● Article: Leslie Roberts. (Jan 1991). The rush to publish. Science, 251. ● Article: Uta Francke. (Feb. 1990). A gene for Wilm’s tumor? Nature, 343. ● Article: Lawrence Grossman. (1990). Invited editorial: Mitochondrial DNA in sickness and health. American Journal of Human Genetics, 46. Cook-Deegan Box 15/28

● Book: Brenda Finucane. Fragile X Syndrome: A handbook for families and educators. Pennsylvania: Elwyn, 1988. ● Article: W. Ted Brown. (1990). Invited editorial: The fragile X: Progress toward solving the puzzle. American Journal of Human Genetics, 47. ● News: Shauna Roberts. (June 1990). A marker gene for alcoholism. The Journal of NIH Research, 2. ● Article: Frank Blanchard. Neurofibromatosis Gene Discovered. ● Article: Jean Marx. (1989). Many gene changes found in cancer. Science, 246. ● Article: Robert P. Erickson. (1990). Invited editorial: Mapping Dysmorphic Syndromes with the aid of the Human/ Mouse Homology Map. American Journal of Human Genetics, 46. ● Article: K.L. Garver & K.M. Lent. (1990). American Society of human genetics membership survey results, 1989. American Journal of Human Genetics, 47. ● Article: E.S. Lander & H. Lodish. (1990). Mitochondrial disease: Gene mapping and gene therapy. Cell, 61.

Folder 2 (cystic fibrosis) ● Article: Leslie Roberts. (April 1988). The race for the cystic fibrosis gene. Science, 240. ● Article: D.E. Koshland. The cystic fibrosis gene story. Science, 245(4922). ● Article: J.L. Marx. (Sept. 1989). Cystic fibrosis gene is found. Science, 245(4922). ● Article: D.E. Koshland. (Sept. 1989).The cystic fibrosis gene story. Science, 245(4922). ● Article: JM. Rommens, M.C. Iannuzzi, B-S. KErem, M.L. Drumm, G. Melmer, M. Dean, R.Rozmahel, J.L. Cole, D. Kennedy, N. Hidaka, M. Zsiga, M. Buchwald, J.R. Rioerdan, L- C. Tsui, & F.S. Collins. (1989). Identification of the cystic fibrosis gene: Chromosome walking and jumping. Science, 245(4922). ● Article: J.R. Rioerdan, J.M. Rommens, B-S. Kerem, N. Alon, R. Rozmahel, Z. Grzelczak, J. Zielenski, S. Lok, N. Plavsic, J-L Chous, M.L. Drumm, M.C. Iannuzzi, F.S. Collins, L-C Tsui. (1989). Identification of the cystic fibrosis gene: Cloning and characterization of complementary DNA. Science, 245(4922). ● Article: B-S. Kerem, J.M. Rommens, J.A. Buchanan, D. Markiewicz, T.K. Cox, A. Chakravarti, M. Buchwald, L-C. Tsui. (1989). Identification of the cystic fibrosis gene: Genetic analysis. Science, 245(4922). ● Article: (1990). Genesis 2000 uncovers cystic fibrosis gene. Molecular Genetics Today, 2(1). ● Article: M. Dean. (1988). Molecular and genetic analysis of cystic fibrosis. Genomics, 3. ● Article: K. Davies. (1989). The search for the cystic fibrosis gene. New Scientist. ● Article: I.B. Levitan. (1989). The basic defect in cystic fibrosis. ● Article: A. Kitzis. (1988). Unusual segregation of cystic fibrosis alleles. Nature, 336. ● Article: M. Super, A. Ivinson, M. Schwarz, L. Giles, R.G. Elles, A.P. Read, & R. Harris. (1987). Clinic experience of prenatal diagnosis of cystic fibrosis by use of linked DNA probes. The Lancet. Cook-Deegan Box 15/28

● Article: X. Estivill, P.J. Scambler, B.J. Wainwright, K. Hawley, P. Frederick, M. Schwartz, M. Baiget, K. Kere, R. Williamson, & M. Farrall. (1987). Patterns of polymorphism and linkage disequilibrium for cystic fibrosis. Genomics, 1. ● Article: J. Buman & H.D. Jonge. Cystic fibrosis advantage. Nature, 336. ● Article: D.P. Rich, M.P. Anderson, R.J. Gregory, S.H. Cheng, S. Paul, D.M. Jefferson, J.D. McCann, K.W. Klinger, A.E. Smith, & M.J. Welsh. (1990). Nature, 347. ● Article: E.D. Green & M.V. Olson. (1990). Chromosomal region of the cystic fibrosis gene in yeast artificial chromosomes: A model for human genome mapping. Science, 250. ● News: (1990). The Washington Post Health. ● News: L. Thompson. (1990). Cystic fibrosis tests. Washington Post.

Folder 3 (Oncogene) ● Article: H, S, Huang, J. Yee, J. Shew, P. Chen, R. Bookstein, T. Friedmann, E. Y-H.P. Lee, & W-H. Lee. (1988). Suppression of the neoplastic phenotype by replacement of the RB gene in human cancer cells. ● Article: M.C. Nussenzweig, E.V. Schmidt, A.C. Shaw, E. Sinn, J.Campos-Torres, B. MAthey-Prevot, P.K. Pattengale, & P. Leder. (1988). A human immunoglobulin gene reduces the incidence of lymphomas in c-Myc-bearing transgenic mice. Nature, 336. ● M. Katan & P.J. Parker. (1988). Oncogenes and cell control. Nature, 332.

Folder 4 (Style of molecular biology) ● A. Kornberg. (1987). The last word. Biotechnology, 5.

Folder 5 (Markers to find human genes) ● Article: G.C. Anderson. (1990). Creation of linkage map falters, posing delay for genome project. The Scientist, 4(1). ● Article: L. Roberts. (1990). The genetic map is back on track after delays. Science. ● Article: M. Barinaga. (1987). Critics denounce first genome map as premature. Nature, 329. ● Article: J.L. Marx. (1985). Putting the human genome on the map. Science, 229. ● Article: O.M. Friedman. (1987). Genome mapping. Nature, 330. ● Article: J.P. Swyers. (1989). Genetic variant of polycystic kidney disease. Research Resources Reporter, 13(12). ● Article: R. Lewin. (1986). Molecular biology of Homo sapien. Science, 233. ● Article: J.M. Yelton. (1983). The F meson found at Cornell. Nature, 306. ● Article: A.J. Jeffreys, N.J. Royle, V. Wilson, & Z. Wong. (1988). Spontaneous mutation rates to new length alleles at tandem-repetitive hypervariable loci in human DNA. Nature, 332. ● Article: M.J. Breuning, S.T. Reeder, H. Brunner, J.W. Ijdo, J.J. Saris, A. Verwest, G.J.B. van Ommen, & P.L. Pearson. (1987). Improved early diagnosis of adult polycystic kidney disease with flanking DNA markers. The Lancet. Cook-Deegan Box 15/28

● Report: V. A. McKusick. (1987). The human gen map. ● Article: F.E. Young. (1987). DNA probes: Fruits of the new biotechnology. JAMA, 258(17). ● Article: P.C. Watkins. (1988). Restriction fragment length polymorphism: Applications in human chromosome mapping and genetic disease research. Biotechniques, 6(4). ● Article: C.D. Boehm, M.S. Stylianos, E. Antonarakis, J.A. Phillips, G. Stetten, & H.H. Kazazian. (1983). Prenatal diagnosis using DNA polymorphisms. The New England Journal of Medicine, 308(18). ● Article: L. Roberts. Mapping by x-ray zapping. Science, 240. ● Article: W.G. Hill. DNA fingerprints applied to animal and bird populations. Nature, 327. ● Article: H.M. Schmeck. (1987). New map of genes may aid in fighting hereditary disease. New York Times. ● Article: R. Weiss. (1987). First human genome map completed. ● Article: C.R. Scriver. (1985). Map, dictionary and directory of the human genome: Reliable knowledge for research and counseling. TIG. ● Article: L. Wingerson. (1987). Religious heritage is genetic gold mine. Medical World News. ● Article: L. Roberts. (1990). Whatever happened to the genetic map. Science, 247. ● Article: R. White & J-M. Lalouel. (1988). Chromosome mapping with DNA markers. Scientific American, 258(2). ● Article: L .Roberts. (1987). Flap arises over genetic map. Science, 238. ● Article: V.A. McKusick. (1986). The gene map of Homo sapiens: Status and prospectus. ● Article: J.F. Crow & W.F. Dove (eds). (1988). Anecdotal, historical, and critical commentaries on genetics. Genetics, 118(1-3). ● Article: L. Roberts. (1988). The race for the cystic fibrosis gene. Science, 240. ● Article: J.L. Marx. (1985). Putting the human genome on the map. ● Article: L. Roberts. (1990). Whatever happened to the genetic map. Science, 247.

Folder 6 ● Book: International institute for human rights studies. Report on activities carried out in 1989. ● Article: M. Capecchi. (1990). Tapping the cellular telephone. Nature, 344. ● Article: G. Montgomery. (1990). The ultimate medicine. Discover. ● Memo from Office of Recombinant DNA activities committee management officer to memes of recombinant DNA advisory committee. (Apr. 6, 1990). Future meeting dates. ● Article: W.F. Anderson. (1989). Human gene therapy: Why draw a line? The Journal of Medicine and Philosophy, 14.

Cook-Deegan Box 15/28

Folder 7 ● Agenda for Human gene therapy subcommittee and recombinant DNA advisory committee. (March 30, 1990). ● Roster for Human gene therapy subcommittee and recombinant DNA advisory committee. (March 30, 1990). ● Article: Department of Health and Human Services. (1990). Recombinant DNA Research; Notice of meetings and proposed actions under guidelines. Federal Register. ● Article: Department of Health and Human Services. (1986). Guidelines for Research involving recombinant DNA molecules; Notice. Federal Register. Folder 8 ● Roster for Human gene therapy subcommittee (March 30, 1990). ● Roster for recombinant DNA advisory committee (March 30, 1990). ● Table seating charts Folder 9 ● Memo from executive secretary to human gene therapy subcommittee and recombinant DNA advisory committee. (March 19, 1990). March 30, 1900, meetings- mailing. Folder 10 ● Additional materials for the March 30 HGT & RAC meetings Folder 11 ● Memo from executive secretary to human gene therapy subcommittee and recombinant DNA advisory committee. (March 19, 1990). March 30, 1900, meetings- mailing. ● Agenda for Human gene therapy subcommittee and recombinant DNA advisory committee. (March 30, 1990). ● Article: Department of Health and Human Services. (1986). Guidelines for Research involving recombinant DNA molecules; Notice. Federal Register. ● Article: Department of Health and Human Services. (1990). Recombinant DNA Research; Notice of meetings and proposed actions under guidelines. Federal Register. Folder 12 ● Agenda for Human gene therapy subcommittee and recombinant DNA advisory committee. (March 30, 1990). ● Table seating charts ● Roster for Human gene therapy subcommittee (March 30, 1990). ● Roster for recombinant DNA advisory committee (March 30, 1990). ● Article: (1990). Points to consider for protocols for the transfer of recombinant DNA into the genome of human subjects. Federal Register ● Article: Department of Health and Human Services. (1986). Guidelines for Research involving recombinant DNA molecules; Notice. Federal Register. ● Article: Department of Health and Human Services. (1990). Recombinant DNA Research; Notice of meetings and proposed actions under guidelines. Federal Register. Cook-Deegan Box 16/28

Folder 1 (newspaper series on gene therapy ● Article: J. Estill. (1988). Committee recommendation is precursor to gene therapy proposals. Associated Press. ● Article: L. Thompson. (1988). Altered cells to be tested in humans. Washington Post.

Folder 2 (additional material for the Anderson, et al, proposal ● Additional material for the Anderson, et al, proposal

Folder 3 (approved 12/9/88) ● Memo from D. Ralbovsky to reporters and editors. (May 22, 1989). Research of insertion of foreign genes into human. ● Memo from D. Ralbovsky to reporters and editors. (May 22, 1989). Research of insertion of foreign genes into human. ● Memo from Committee management officer to human gene therapy subcommittee. (Nov. 10 , 1988). Human Gene Therapy Subcommittee meeting- December 9, 1988. ● Memo from Committee management officer to human gene therapy subcommittee. (Nov.22, 1988). Human Gene Therapy Subcommittee meeting- December 9, 1988- third mailing. ● Additional comments on the brochure. ● Comments on proposal by Anderson, et al. ● Article: B. Hogan & L. Lyons. (1988). Getting nearer the mark. Nature, 336. ● Correspondence between Howard Temin and LeRoy Walters. ● Article: S.L. Mansour, K.R. Thomas, & M.R. CApecchi. (1988). Disruption of the proto- oncogene int-2 in mouse embryo-derived stem cells: A general strategy for targeting mutations to no-selectable genes. Nature, 336. ● Article: Department of Health and Human Services. (1986). Guidelines for Research involving recombinant DNA molecules; Notice. Federal Register.

Folder 4 ( Recombinant DNA advising committee). ● Letter from W.J. Gartland to Cook-Deegan. (Sept. 30, 1988). ● Agenda for Human gene therapy subcommittee and recombinant DNA advisory committee. (Oct. 3, 1988). ● Chronology of review of human gene transfer proposal. ● Article: Department of Health and Human Services. (1988). Recombinant DNA advisory committee meeting and recombinant DNA research; Proposed actions under guidelines; notice. Federal Register. ● Article: Department of Health and Human Services. (1986). Guidelines for Research involving recombinant DNA molecules; Notice. Federal Register. ● Table seating charts ● Roster for recombinant DNA advisory committee ● Memo from associate director for science policy and legislation to recombinant DNA advisory committee. (Sept. 8, 1988). October 3, 1988, meeting- mailing I Cook-Deegan Box 16/28

● Additional material for the recombinant DNA advisory committee. (Oct 3, 1988)

Folder 5 (Human gene therapy subcommittee. ● Empty

Folder 6 (Articles (incl. newspaper articles) on gen mapping/ studies ● Article: A. Barnum. (1989). Who will profit from advances? San Jose Mercury-News. ● Article: R. Saltus. (1989). Opponent files suit to halt first human gene implants. The Boston Globe. ● Article: B. Siegel. (1987). Desire to be first colors gene studies. Los Angeles Times. ● Article: M.B. Rosenberg, T. Friedmann, R.C. Robertson, M. Tuszynski, J.A. Wolff, X.O. Breakefield, & F.H. Gage. (1988). Grafting genetically modified cells to the damaged brain: Restorative effects of NGF expression. Science, 242. ● Article: W. Booth. (1989). NIH scientists agonize over technology transfer. Science, 243.

Folder 7 (Staff paper- “transgenic animals”- office of technology assessment ● Report: Office of Technology Assessment. (1988). Transgenic Animals.

Folder 8 (Medline Searches) ● Search query

Folder 9 (Press release re law suit 1/30/89 ● News: J. Rifkin. Disability rights leaders from across the country, Jeremy Rifkin, and the foundation on economic trend challenge first human genetic experiment at NIH meeting January 30, 1989.

Folder 10 ( points to consider subcommittee ● Memo from executive secretary to points to consider subcommittee. (March 15, 1989). Subcommittee meeting- March 31, 1989. ● Memo from Anne R. Witherby to chairman childress and members of the human gene therapy subcommittee group to revise the points to consider. (March 1989). List of suggestions for revision of the ‘points to consider.’ ● Guide: Gene therapy for human patient: Information for the general public. (Jan. 1989). ● Memo from John Fletcher to James P. Childress. (March 25, 1989). Points to consider. ● Roster of recombinant DNA advisory committee ● Letter from Paul Neiman to Rachel Levinson. (March 22, 1989).

Cook-Deegan Box 16/28

Folder 11 (invitation to speak @ 3rd int’l mtg- association of biotechnology companies 11/11/88 ● Letter from Paul Tolstoshev to Cook-Deegan.

Folder 12 (article) ● Article: B. Egelko. (1989). Patent suit on key drug survives. Associated Press.

Folder 13 ( Rough draft) ● Report: T. Friedmann. Progress toward human gene therapy.

Folder 14 (letter) ● Letter from Michael Emerson. (rough draft)

Folder 15 (mailing) ● Memo from Associate director for science policy and legislation to recombinant DNA advisory committee. (1988). October 3, 1988, meeting- mailing II.

Folder 16 ( articles: various) ● Article: M.S. Hershfield, R.H. Buckley, M.L. Greenberg, A.L. Melton, R. Schiff, C. HAtem, J.Kurtzberg, M.L. MArkert, R.H. Kobayashi, A.L. Kobayashi, & A. Abuchowski. ( 1987). Treatment of adenosine deaminase deficiency with polyethylene glycol-modified adenosine deaminase. The New England Journal of Medicine, 316(10). ● Article: Rochelle Hirschhorn. (1987). Therapy of genetic disorders. The New England Journal of Medicine, 316(10). ● Article: Douglas McCormick. (1985). The first word. Bio/Technology. ● Article: Theodore Friedmann. Scientific an d policy progress toward gene therapy. Bioessays, 3(1). ● Article: Leslie Roberts. (1988). Decision on gene test deferred. ● Article: Leslie Roberts. (1988). New targets for human gene therapy. Science, 241. ● Magazine: The Alicia Patterson Foundation. (1987-88). Reporter, 10 (5). ● News: Robert Cunningham. (1988). The NY Times. ● News: Alan L. Otten. (1987). Wall Street Journal. ● News: Alan L. Otten. (1987). Price of progress: Efforts to predict genetic ills pose medical dilemmas. Wall Street Journal. ● News: William R. Wineke. (1988). A chance to give life. Wisconsin State Journal. ● News: New York Times News Service. (1988). A lifeline for patients who need bone marrow. Herald Examiner. ● News: Diane Eicher. (1988). Alzeheimer’s growing into a social issue. The Denver Post. ● (6 copies) Guideline: Approval process for gene therapy protocols. ● News: Jeffrey L. Fox. (1988). Gene therapy nearing U.S. clinical trials. Bio/Technology, 6. Cook-Deegan Box 16/28

● Article: Paul D. Robbins. (1988). Advances in gene transfer and gene therapy. ● Article: Stuart A. Newman. (1988). Does human genetic engineering have a scientific basis? Report from the Institute for Philosophy & Public Policy. ● Article: Barbara J. Culliton. NIH delays gene transfer experiment. Science, 242. ● Article: Joseph Palca. NIH delay first gene transfer. Nature, 335.

Folder 17 (Reformed church in America study on genetic engineering 7/29/88) ● Letter from Edwin G. Mulder to James Wyngaarden. (7/29/88). ● Article: Genetic engineering: Theological an d ethical perspectives. (1988). Minutes of the General Synod. ● Report: National Health and Medical Research Council. (1988). Report on Round Table Conference on Human Gene Therapy.

Folder 18 (Correspondence: various) ● Letter from LeRoy Walters to Cook-Deegan. (3/31/87). ● Letter from Barbara Filner to Cook-Deegan. (3/31/87). ● Letter from Barbara Filner to Cook-Deegan. (3/31/87). ● Letter from John Fletcher to Cook-Deegan. (4/20/87). ● Letter from James F. Childress to Cook-Deegan. (4/7/87). ● Letter from Cook-Deegan to Rene I. Jahiel. (5/18/87). ● Letter from Annamaria Kausz to Cook-Deegan. (4/10/87). ● Letter from Karen M. Lado to Cook-Deegan. (4/22/87). ● Memo from Gretchen Kolsrud to Roger Herdman. (6/7/1987). Nomination of Bob Cook- Deegan for Senior Associate.

Folder 18 (policy statements of human gene therapy: an int’l chronology) ● Report: LeRoy Walters. (1989).Policy statements on human gen therapy: An international chronology.

Folder 19 ( levels of review for clinical protocols involving human gene therapy) ● Guideline: levels of review for clinical protocols involving human gene therapy or human gene transfer.

Folder 20 (3rd Int’l meeting- association of biotechnology companies- march 29-31, 1989) ● Attendees roster ● Registration forms and program. Cook-Deegan Box 17/28

Articles—Various

● Article: “Studies Suggest Gene Alteration May Help Treat Some Cancers,” AP. December 16, 1988. ● Article: “Disruption of the proto-oncogene int-2 in mouse embryo-derived stem cells: a general strategy for targeting mutations to non-selectable genes.” Suzanne L. Mansour, Kirk R. Thomas, and Mario R. Capecchi. Nature vol. 336. 24 November 1988. ● Article: “Getting nearer the mark.” Brigid Hogan and Karen Lyons. Nature vol. 336. 24 November 1988. ● Article: “Synergy of chemists and biologists.” S.D. Nature vol. 336. 24 November 1988. ● Article: “Thumbprints in Our Clay.” Horace Freeland Judson. The New Republic. September 19 & 26 1983. ● Article: “Ethical Questions Haunt New Genetic Technologies.” Leslie Roberts. Science vol. 243. 3 March 1989. ● Article: “Gene Test Begins.” Barbara J. Culliton. 26 May 1989. ● Article: “Gene transfer to humans approved in face of advice.” Joseph Palca. Nature vol. 335. 13 October 1988. ● Article: “Genesis and Genetics.” The New York Times. June 11, 1983. ● Article: “The Clergy Ponder the New Genetics.” Julie Ann Miller. Science News vol. 125. March 24, 1984. ● Article: “Viruses emerge as a new key for unlocking life’s mysteries.” Fred Hapgood. Smithsonian vol. 18 no. 8. November 1987. ● Article: “Transgenic Animals.” Rudolf Jaenisch. Science vol. 240. 10 June 1988. ● Article: “Gene Transfer Is Coming on Target.” Jean L. Marx. Science vol. 242. 14 October 1988. ● Newsletter: Breakthrough. Vol. V, no. 24. December 15, 1987. ● Article: “Targetted correction of a mutant HPRT gene in mouse embryonic stem cells.” Thomas Doetschman, Ronald G. Gregg, Nobuyo Maeda, Martin L. Hooper, David W. Melton, Simon Thompson, Oliver Smithies. Nature vol. 330. 10 December 1987.

Articles—Various

● Article: “Gene Therapy in Human Beings: When is it Ethical to Begin?” W. French Anderson, John C. Fletcher. New England Journal of Medicine November 27, 1980. ● Article: “Human gene therapy: scientific and ethical considerations.” W. French Anderson. The Journal of Medicine and Philosophy. 1985. ● Article: “Ethical issues in and beyond prospective clinical trials of human gene therapy.” John C. Fletcher. The Journal of Medicine and Philosophy. 1985. ● Article: “Construction of a Retrovirus Packaging Mutant and Its Use to Produce Helper- Free Defective Retrovirus.” Richard Mann, Richard C. Mulligan, and David Baltimore. Cell vol. 33. May 1983. ● Article: “Factors Involved in Production of Helper Virus-Free Retrovirus Vectors.” A. Dusty Miller, David R. Trauber, and Carol Buttimore. Somatic Cell and Molecular Genetics vol. 12 no. 2. 1986. Cook-Deegan Box 17/28

● Article: “Redesign of Retrovirus Packaging Cell Lines To Avoid Recombination Leading to Helper Virus Production.” A. Dusty Miller and Carol Buttimore. Molecular and Cellular Biology vol. 6 no. 8. Aug. 1986.

Draft: “Safety Considerations in Somatic Gene Therapy…” by Temin

● Draft: “Safety Considerations in Somatic Gene Therapy of Human Disease with Retrovirus Vectors.” Howard M. Temin.

Human Gene Therapy, Preclinical Data Document, 4/24/87

● Report: Human Gene Therapy, Preclinical Data Document. W. French Anderson, R. Michael Blaese, Arthur W. Nienhuis, Richard J. O’Reilly. April 24, 1987.

Human gene therapy subcommittee meeting materials, 12/87

● Agenda: Human Gene Therapy Subcommittee Meeting, Recombinant DNA Advisory Committee. December 7, 1987. ● Handwritten notes. ● Memo: from Executive Secretary to Human Gene Therapy Subcommittee. Human Gene Therapy Subcommittee Meeting—December 7, 1987. November 24, 1987. ○ Letter: from W. French Anderson to William J. Gartland. November 20, 1987. ○ Appendix A. ○ Letter: from W. French Anderson and Ken Cornetta to Bruce Burlington. September 25, 1987. Appendix B. ○ Name list: Recombinant DNA Advisory Committee, Human Gene Therapy Subcommittee. December 1987. ○ Letter: from Clifford Grobstein to LeRoy Walters. September 18, 1987. ○ Handwritten notes. ○ Memo: from Robert F. Rich to Anne R. Witherby, Leroy Walters, William Gartland. Two Drafts of General Information Document. October 12, 1987. ○ Handwritten note. ○ Draft: Gene Therapy for Human Patients: General Information for the Nonscientific Public. ○ Letter: from U. Horst Petersen to William Gartland. 19 October 1987. ○ Report: Act on Establishment of an Ethical Council and Regulation of Certain Forms of Biomedical Experiments.

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Letter from Temin Re: Anderson letter 12/1/87

● Letter: from Howard M. Temin to LeRoy Walters. Re: Anderson letter of Nov. 20, 1987. December 1, 1987. ○ Report: Ethical Aspects of Research on Human Gene Therapy. A report to the National Health and Medical Research Council by the Medical Research Ethics Committee of NHMRC. 1987.

World Medical Association Statement on Genetic Counseling and Genetic Engineering 10/87

● Statement: World Medical Association Statement on Genetic Counseling and Genetic Engineering. October 1987.

New Members of the Human Gene Therapy Subcommittee

● Curriculum Vitae: Charles Joseph Epstein. ● Curriculum Vitae: Robert Porter Erickson. ● Curriculum Vitae: Robertson Parkman. ● Curriculum Vitae: Paul Eric Neiman. ● Curriculum Vitae: Richard C. Mulligan (ad hoc consultant)

Letters re: Human gene therapy preclinical data document

● Letter: from W. French Anderson to William J. Gartland. November 20, 1987. ○ Appendix A. ○ Letter: from W. French Anderson and Ken Cornetta to Bruce Burlington. September 25, 1987. Appendix B. ● Letter: from Cook-Deegan to Leroy Walters. 5 October 1987.

Letter re: revised draft of General Information Paper, Human gene therapy subcommittee 10/87

● Letter: from Cook-Deegan to LeRoy Walters. 2 October 1987. ○ Memo: from Anne R. Witherby to Human Gene Therapy Subcommittee Members and Consultants. September 4, 1987. ○ Draft: Gene Therapy for Human Patients: General Information for the Nonscientific Public. ○ Memo: from LeRoy Walters to All Members, Human Gene Therapy Subcommittee. Revised Draft of “General Information about Gene Therapy for the Treatment of Human Patients.” August 27, 1987. ○ Draft: General Information about Gene Therapy for the Treatment of Human Patients. August 27, 1987.

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Articles—Various

● Article: “Marrow Transplantation in Patients with Advanced Thalassemia.” Guido Lucarelli, Mariella Galimberti, Paola Polchi, Claudio Giardini, Patrica Politi, Donatella Baroncianti, Emanuele Angelucci, Flavia Manenti, Constante Delfini, Giovanni Aureli, and Pietro Muretto. The New England Journal of Medicine vol. 316 no. 17. April 23, 1987. ● Editorial: “Bone Marrow Transplantation for Genetic Disesases.” William Krivit, Chester B. Whitley. The New England Journal of Medicine vol. 316 no. 17. April 23, 1987. ● Article: “Gene Therapy for Humans Moves Nearer to Reality.” Harold M. Schmeck Jr. The New York Times, May 26, 1987. ● Report/Issue Brief: Human Gene Therapy. Irene Stith-Coleman and Judith A. Johnson. Congressional Research Service. Updated September 1, 1987. ● Report: Biotechnology, Chemical Engineering. West Europe. ● Article: “Human Gene Therapy: A Look at a Cutting Edge of Biomedical Science.” Frances Sharples. Oak Ridge National Laboratory Review. 1986. ● Article: “Implantation of Genetically Engineered Fibroblasts into Mice: Implications for Gene Therapy.” Richard F. Selden, Marek J. Skoskiewicz, Kathleen Burke Howie, Paul S. Russell, Howard M. Goodman. Science vol. 236. 8 May 1987. ● Article: “Different Perspectives on Cell Culture.” Jennifer Van Brunt. Bio/Technology vol. 6. January 1988. ○ Article: “Commercializing Gene Therapy.” Arthur Klausner. Bio/Technology vol. 6. January 1988.

1987 Intensive Bioethics Course

● Outline: New Frontiers: Human Gene Therapy. LeRoy Walters. June 6, 1987. ○ Outline: Points to Consider in the Design and Submission of Human Somatic Cell Gene Therapy Protocols. Recombinant DNA Technical Bulletin vol. 8 no. 4. December 1985. ○ Report: Case Study: Gene Therapy for Thalassemia. LeRoy Walters. ○ List: Suggested Readings on Human Gene Therapy. LeRoy Walters. June 1987. ● Reports, tables, diagrams: Appendix A: Supplementary Material for Text. ● Outline: Appendix B: Published Papers.

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Human gene therapy subcommittee meeting materials—12/7/87

● Memo: from Executive Secretary to Human Gene Therapy Subcommittee. Human Gene Therapy Subcommittee Meeting—December 7, 1987. November 6, 1987. ○ Comments on the Preclinical Data Document ■ Memo: from Executive Secretary William J. Gartland to Human Gene Therapy Subcommittee, Recombinant DNA Advisory Committee. Review of Preclinical Data Document. October 28, 1987. ■ Letter: to William J. Gartland. June 26, 1987. ■ Letter: from Howard M. Temin to William J. Gartland. Re: Anderson et al. “Human Gene Therapy Preclinical Data Document.” July 3, 1987. ■ Letter: from Michael S. Hershfield to William J. Gartland. July 27, 1987. ■ Report: Human Gene Therapy Preclinical Data Document—Comments of M.S. Hershfield. ■ Letter: from David W. Martin to William J. Gartland. July 15, 1987. ■ Letter: from Mitchell L. Cohen to William J. Gartland. July 6, 1987. ■ Letter: from A. Dusty Miller to William J. Gartland. July 9, 1987. ■ Letter: to William J. Gartland. July 22, 1987. ■ Letter: from Cook-Deegan to Leroy Walters. 5 October 1987. ■ Letter: to William Gartland. July 22, 1987. ■ Letter: to William Gartland. July 27, 1987. ■ Letter: from Richard C. Mulligan to William Gartland. July 31, 1987. ■ Report: Review of Human Gene Therapy Pre-clinical Data Document, submitted by W. French Anderson. Reviewed by Richard C. Mulligan. ○ Report: “Expression of Human Adenosine Deaminase in Nonhuman Primates After Retrovirus-Mediated Gene Transfer.” Philip W. Kantoff, Alfred P. Gillio, Jeanne R. McLachlin, Claudio Bordignon, Martin A. Eglitis, Nancy A. Kernan, Robert C. Moen, Donald B. Kohn, Sheau-Fung Yu, Evelyn Karson, Stefan Karlsson, James A. Zwiebel, Eli Gilboa, R. Michael Blaese, Arthur Nienhuis, Richard J. O’Reilly, and W. French Anderson. J. Exp. Med. Vol. 166. July 1987. ○ Report: “Separation of Human from Mouse and Monkey Adenosine Deaminase by Ion-Exchange Chromatography following Retroviral-Mediated Gene Transfer.” Jeanne R. McLachlin, Sheri C. Bernstein, and W. French Anderson. Analytical Biochemistry 163. 1987. ○ Comments on the general information document on human gene therapy ■ Memo: from Judy Areen to Anne Witherby, LeRoy Walters. General Information Document. October 23, 1987. ■ Draft: General information about gene therapy for the treatment of human patients. August 27, 1987. Revisions by Judy Areen. ■ Memo: from LeRoy Walters to All Members, Human Gene Therapy Subcommittee. Revised Draft of “General Information about Gene Therapy for the Treatment of Human Patients.” August 27, 1987. ■ Draft: General information about gene therapy for the treatment of human patients. August 27, 1987. ■ Letter: from Howard M. Temin to William Gartland. September 16, 1987. Cook-Deegan Box 17/28

■ Memo: from LeRoy Walters to All Members, Human Gene Therapy Subcommittee. Revised Draft of “General Information about Gene Therapy for the Treatment of Human Patients.” August 27, 1987. ■ Draft: General information about gene therapy for the treatment of human patients. August 27, 1987. Revisions by Howard Temin. ■ Letter: from Cook-Deegan to LeRoy Walters. 2 October 1987. ■ Memo: from Anne R. Witherby to Human Gene Therapy Subcommittee Members and Consultants. September 4, 1987. ■ Draft: Gene Therapy for Human Patients: General Information for the Nonscientific Public. ■ Memo: from LeRoy Walters to All Members, Human Gene Therapy Subcommittee. Revised Draft of “General Information about Gene Therapy for the Treatment of Human Patients.” August 27, 1987. ■ Draft: General information about gene therapy for the treatment of human patients. August 27, 1987. ○ OTA paper on bone marrow transplantation ■ Report: OTA Project Staff—Bone Marrow Transplantation Using Unrelated Donors: Current Clinical Status and Policy Issues. Mary Ann McLaughlin Hughes, Hellen Gelband, Brigitte M. Duffy. October 1987. ○ Points to Consider ■ Outline: Points to Consider in the Design and Submission of Human Somatic-Cell Gene Therapy Protocols. Human Gene Therapy Subcommittee, NIH Recombinant DNA Advisory Committee. September 29, 1986. ■ Report: Points to Consider in the Design and Submission of Human Somatic-Cell Gene Therapy Protocols. September 29, 1986. ○ Memo: from Executive Secretary William Gartland to Members of Human Gene Therapy Subcommittee. Future Meeting Dates. November 2, 1987.

Human gene therapy subcommittee meeting materials—7/29/88

● Handwritten notes. ● Memo: from Executive Secretary to Human Gene Therapy Subcommittee. Human Gene Therapy Subcommittee Meeting—July 29, 1988. July 5, 1988. ○ Hotel reservation sheet: Human Gene Therapy Subcommittee, July 29, 1988. ○ Roster: Recombinant DNA Advisory Committee, Human Gene Therapy Subcommittee. July 1988. ○ Protocol for Mark Tumor Infiltrating Lymphocytes ■ Memo: from W. French Anderson to Debra Wilson. Amendment to RD Number 84-VIII-6. June 15, 1988. ■ Form: Amendment to Approved Clinical Research Project. June 10, 1988. ■ Form: Standard Format for Proposal of Amendment or Addition to Approved Clinical Research Project. June 10, 1988. ■ Memo: from Steven A. Rosenberg, R. Michael Blaese, W. French Anderson to Chairman, Clinical Research Subpanel, NCI. Addition to Clinical Research Project 86-C-183. June 10, 1988. Cook-Deegan Box 17/28

■ Report: Addition to: The Treatment of Patients with Advanced Cancer Using Cyclophosphamide, Interleukin-2, and Tumor Infiltrating Lymphocytes. ■ Form: Consent to Participate in a Clinical Research Study. The Treatment of Patients with Advanced Cancer Using Cyclophosphamide, Interleukin- 2, and Tumor Infiltrating Lymphocytes. ■ Memo: from Acting Chairman, Clinical Research Subpanel to S. Rosenberg, Principal Investigator. Action on Clinical Research Project. August 12, 1986. ■ Report: Initial Proposal of Clinical Research Project. Principal Investigator, Steven A. Rosenberg. ■ Form: Consent to Participate in a Clinical Research Study. The Treatment of Patients with Advanced Cancer Using High Does Recombinant Interleukin-2 Plus Cyclophosphamide and Tumor Infiltrating Lymphocytes. ○ Report: Gene Transfer into Primates and Prospects for Gene Therapy in Man. By Kenneth Cornetta, Robert Wieder and W. French Anderson. 1988.

7/88 Mtg: CA ???

● Memo: from Acting Chairman, Clinical Research Subpanel, NCI to Rosenberg and Anderson. Action on Clinical Research Project. July 15, 1988. ○ Minutes: National Cancer Institute Clinical Research Subpanel Meeting. June 20, 1988.

Human Gene Therapy Subcommittee Mtg. Materials—7/29/88

● Memo: from Executive Secretary William Gartland to Human Gene Therapy Subcommittee. Human Gene Therapy Subcommittee Meeting—July 29, 1988. July 18, 1988. ● Notes: Comments on Anderson et al., amendment of RD Number 84-VIII-6. Howard M. Temin. ● Additional Material from Anderson/Blaese/Rosenberg ○ Letter: from W. French Anderson, R. Michael Blaese, Steven A. Rosenberg to William J. Gartland. July 13, 1988. ○ Memo: from Clinical Director Harry R. Keiser to W. French Anderson. Amendment to 86-C-183. June 27, 1988. ○ Summary: Brief Scientific Abstract. Submission to RAC. Anderson/Blaese/Rosenberg. July 13, 1988. ○ Summary: Brief Non-Technical Description of the Proposed Experiment. Submission to RAC. Anderson/Blaese/Rosenberg. July 13, 1988. ○ Curriculum Vitae: W. French Anderson. June 1988. ■ Bibliography. ■ Abstracts. ■ Books.

Cook-Deegan Box 17/28

○ Curriculum Vitae: Robert Michael Blaese. ■ Bibliography. ○ Curriculum Vitae: Steven A. Rosenberg. May 1988. ■ Bibliography—Books. ■ Bibliography. ■ Papers Submitted and in Press. ○ Report: Responses to the Questions Raised in the “Points to Consider” Document. Submission to RAC. Anderson/Blaese/Rosenberg. July 13, 1988. ○ Report: Preclinical Studies: Recent Results. Submission to RAC. Anderson/Blaese/Rosenberg. July 13, 1988. ● Handwritten notes. ● Memo: from Anne R. Witherby to Members and Former Members, Human Gene Therapy Subcommittee. Two Agenda Items for July 29th Meeting. July 20, 1988. ○ Notes: Review of September 29, 1986 Points to Consider. Anne R. Witherby. ○ Draft: Gene Therapy for Human Patients: Information for the General Public. ● Agenda: Human Gene Therapy Subcommittee, Recombinant DNA Advisory Committee, National Institutes of Health. July 29, 1988. ● Outline: National Institutes of Health, Points to Consider in the Design and Submission of Human Somatic-Cell Gene Therapy Protocols. Human Gene Therapy Subcommittee, NIH Recombinant DNA Advisory Committee. September 29, 1986. ○ Report: Points to Consider in the Design and Submission of Human Somatic-Cell Gene Therapy Protocols. September 29, 1986. ● Gene Therapy for Human Patients/Previously distributed at the Dec. 7, 1987 HGTS meeting ○ Draft: Gene Therapy for Human Patients, Preliminary Draft V ○ Report: The “Points to Consider” for Gene Therapy Researchers. ● Letter: from Howard M. Temin to William J. Gartland. Re: Anderson et al. Protocols. July 27, 1988. Cook-Deegan Box 18/28

Folder 1 - Articles, various ● Article-“Custom kids and the moral duty to genetically engineer our childen” by E. Joshua Rosenkranz. High Technology Law Journal Vol 2; 1 ● Article- “Prospects for human gene therapy” by W. French Anderson. Science 26 October 1984, Vol 226 ● Article-“Transfer and expression of cloned genes using retroviral vectors” by Eli Gilboa, Martin A. Eglitis, Philip W. Kantoff and W. French Anderson. Bio/Technologies Vol 4, No 6. 1986 ● Article- “Gene expressed in mice after high efficiency retroviral-mediated gene transfer” by Martin A. Eglitis, Philip Kantoff, Eli Gilboa and W. French Anderson. Science 20 December 1985, Vol 230 ● Article- “Correction of adenosine deaminase deficiency in cultured human T and B cells by retrovirus-medated gene transfer” by Philip W. Kantoff, Donald B. Kohn, Hiroaki Mitsuva, Donna Armentano, Miri Sieberg, James A. Zwiebel, Martin A. Eglitis, Deanne R. McLachlin, Dan A. Wiginton, John J. Hutton, Sheldon D. Horowitz, Eli Galboa, R. Michael Blaese and W. French Anderson. Proc. Natl. Accad. Scie. USA. Vol 83, September 1986 ● Article- “Effect for internal viral sequence on the utility of retroviral vectors” by Donna Armentano, Sheau-Fung Yu, Philip W. Kantoff, Thomas von Ruden, W. French Anderson, Eli Galboa. Journal of Virology. In press. ● Article- “Separation of human from mouse and monkey adenosine deaminase by ion-exchange chromatography following retroviral-mediated gene transfer” by Jeanne R. McLachlin, Sheri C. Bernstein and W. French Anderson. Analytical Biochemistry 162 1987 ● Article- “Expression of human adenosine deaminase in non-human primates after retroviral mediated gene transfer” by Philip W. Kantoff, Al Gillio, Jeanne R. McLachlin, Claudio Bordignon, Martin A. Eglitis, Nancy A. Kernan, Robert C. Moen, Donald B. Kohn, Sheau-Fung Yu, Evelyn Karson, Stefan Karlsson, James A. Zwiebel, Eli Gilboa, R. Michael Blaese, Arthur Nienhuis, Richard J. O’Reilly, and W. French Anderson. J. Experimental Medicine. In press

Folder 2 - Gene therapy articles ● Article- “First trimester fetal diagnosis for haemoglobinobinopathies: three cases” by J.M. Old, R.H.T. Ward, M. Petrou, F. Karagozlu, B. Modell, D.J. Weatherall. The Lancet December 25, 1982 ● Article-“Globin gene studies create a puzzle” by Gina Kolata. Science Vol 223, 3 February 1984 ● Article- “New clues to gene regulation” by Gina Kolata. Science Vol 224, 11 May 1984 ● Article- “Absence of maternal contamination of chorionic villi used for fetal-gene analysis” by Robert G. Elles, Robert Williamson, Meena Niazi, Dulci V. Coleman and David Horwell. The New England Journal of Medicine. June 16, 1983. Vol 308 No 24 ● Article-“Treatment is nearing fore genetic defects” by Harold M. Schemeck Jr. No source, April 10, 1984 Cook-Deegan Box 18/28

● Chapter from The New Genetics- Chapter 4: The molecular genetics of Thalassemia ● Article-“Augmentation of fetal-hemoglobin production in anemic monkeys by hydroxyurea” by Norman L. Letvin, David C. Linch, G. Peter Beardsley, Kim W. McIntyre and David G. Nathan. The New England Journal of Medicine. Vol. 310 No. 14, April 5, 1984 ● Article- “DNA hybridization probes” No Author. Commercial Biotechnology: an international analysis. ● Chapter? Molecular Genetics of Human Globins ● Article- “Molecular genetics of the HPRT-deficiency syndromes” by James M. Wilson and William N. Kelley. Hospital Practice May 1984 ● Handwritten notes ● Article- “Direct gene analysis of chorionic villi: a possible technique for first- trimester antenatal diagnosis of haemoglobinopathies” by Robert Williamson, Joyce Eskdale, D.V. Coleman, M. Niazi, F.E. Loeffler and B.M. Model. The Lancet 21 November 1981 ● Article- “Midtrimester amniocentesis for prenatal diagnosis” The NICHD National Registry for Amniocentesis Study Group. JAMA September 27, 1976. Vol. 236, No. 13 ● Article- “Human growth hormone treatment in short children without growth hormone deficiency” by Nikolaus Stahnke. Letter. The New England Journal of Medicine. April 5, 1984 ● Article- “Use of haplotype analysis in the β-globin gene cluster to discover β- Thalassemia mutations” by Haig H. Kazazian, Jr., Stylianos E. Antonarakis, Tu- chen Cheng, Corinne D. Boehm and Pamela G. Waber. Globin Gene Expression and Hemotopoietic Differentation. 1983 ● “Developing genetic technologies” Chapter 2. Office of Technology Assessment ● Article- “Structural and functional defects in β-Thalassemia” by Richard Treisman, Stuart H. Orkin and Tom Maniatis. Globin Gene Expression and Hematopoitic Differentation 1983 ● Article- “Amnio alternative” by Gina Kolata. Science 84 ● Article- “Sickle-cell anemia: molecular and cellular bases of therapeutic approaches” by Jurrien Dean and Alan N. Schechter. New England Journal of Medicine. 299 October 5, 12 and 19, 1978 ● Letter from Alan N. Schechter to Ellie Pitts. March 7, 1984. About articles he wrote about sickle cell disease ● Article- “Gene therapy” by Bob Williamson. Nature Vol 298 29 July 1982 ● Article-“Deregulation of screening for alpha-fetoprotein in pregnancy (letter)” by James E. Haddow and Aubrey Milunsky. The New England Journal of Medicine Vol 310, No. 25, June 21, 1984 ● Article-“Bone-marrow transplantation in a patient with sickle-cell anemia” by F. Leonard Johnson, A. Thomas Look, Mary R. Ruggiero, Luciano Dalla-Pozza and Frederic T. Billings. The New England Journal of Medicine. September 20, 1984 Vol. 311, No. 12 Cook-Deegan Box 18/28

● Article- “Introduction of new genetic material into pluripotent haematopoietic stem cells of the mouse” by David A. Williams, Ihor R. Lemischka, David G. Nathan and Richard C. Mulligan. Nature Vol. 310 1984 ● Article- “Expression of a retrovirus encoding human HPRT in mice” by A. Dusty Miller, Robert J. Eckner, Douglas J. Jolly and Inder M. Verma. Science Vol 225 21 June 1984 ● Article-“Gene therapy method shows promise” by Gina Kolata. Science Vol 223 30 March 1984 ● Report of the Committee of Inquiry into Human Fertilisation and Embryology” London, July 1984 ● Article- “The stork market: the law of new reproduction technologies” August 1984 Vol. 70 American Bar Association Journal ● Article- “Prospects for human gene therapy” by W. French Anderson. October 1984 Science. ● Article- “Gene therapy: correcting errors in life’s blueprint” by Berverly Merz. Medical World News October 8, 1984 ● Article- “Informed consent and the danger of bias in the formulation of medical disclosure practices” by Theodore J. Schneyer. Wisconsin Law Review 1976. With handwritten notes

Folder 3 - Gene Therapy Articles ● Article-“Molecular genetics for the clinician” No author. The Lancet, February 4, 1984 ● Handwritten notes –References ● Article- “Cloned human phenylalanine hydroxylase gene allows prenatal diagnosis and carrier detection of classical phenylketuria” by Savio L.C.Woo, Alal S. Lidsky, Flemming Guttler, T. Chandra and Kathryn J.H. Robson. Nature Vol. 306 10 November 1983 ● Article- “Quick fixes not on the cards” by Stephen Budiansky. Nature- illegible info ● Article- “Unlocking the secrets of genetic disease” by Matt Clark and Mariana Gosnell The Economist December 17, 1983 ● Article- “Gene probe find Huntington’s disease” No author. New Scientist 10 November 1983 ● Article- “Chorionic villus biopsy” No author. Outlook January 1984 ● Article- “Venezuelan connection” by Julie Ann Miller. Science News Vol 124 ● Article- “Closing in on a killer gene” by Gina Kolata. Discover March 1984 ● Article- “The birth of recombinant RNA technology” by Roger Lewin Science Vol. 222 23 December 1983 ● Article- “Specific expression of transferred genes” Jean L. Marx. Science Vol. 222 2 December 1983 ● Article- “Diagnostic application of first trimester trophoblast sampling in 100 pregnancies” by G. Simon, Br. Brambati, C. Danesino, G.L. Terzoli, L. Romitti, F. Rossella, and M. Fraccaro. Hum Genet. 1984 Cook-Deegan Box 18/28

● Article- “Trophoblast sampling in early pregnancy, culture of rapidly dividing cells from immature placental villi” by Meena Niazi, Dulcie V. Coleman and F.E. Loeffler. British Journal of Obsterics and Gynaecology November 1981 Vol. 88 ● Article- “DNA-based genetic disease tests tantalize but still elude biomedical researchers” No author, no source ● Gene Transplantation: Review of Animal Literature- Draft 5 ● Article- “Hemoglobin- from F to A, and back” by William B. Munier, Goodwill M. Stewart, Charles S. Amorosino, Jr. The Committee on Publications of the Massachusetts Medical Society, etc. The New England Journal of Medicine. Vol. 310, No. 14 ● Article- “Genetic diagnosis of the fetus” by Stuart H. Orkin. Nature Vol 296 18 March 1982 ● Article- “Prenatal prediction of α-thalassemia phenotype by endonuclease mapping of parental DNA” by Urs P. Steinbrecher, Yuet Wai Kan, Nannie K.M. De Leeuw. CMA Journal January 15, 1982 Vol 126 ● Article- “Genetic diseases: diagnosis by restriction endonuclease analysis” Stylianos E. Antonarakis, John A. Philips III, Haig H. Kazazian, Jr. The Journal of Pediatrics June 1982, Vol. 100 No. 6 ● Article- “A sensitive new prenatal test for sickle-cell anemia” by Judy C. Chang and Yuet Wai Kan. The New England Journal of Medicine July 1, 1982, ● Article- “Prenatal diagnosis of β-thalassemia: detection of a single nucleotide mutation in DNA” By Mario Pirastu, Yuet Wai Kan, Antonio Cao, Brenda J. Connder, Raymond L. Teplitz and R. Bruce Wallace. The New England Journal of Medicine August 4, 1983 ● Article- “Prenatal diagnosis of α-antitrypsin deficiency by direct analysis of the mutation site in the gene” by Vincent J. Kidd, Mitchell S. Golbus, R. Bruce Wallace, Keiichi Itakura, Savio L.C. Woo. The New England Journal of Medicine Vol. 310 No. 10 ● Article- “Rapid prenatal diagnosis of glycogen-storage disease type II by electron microscopy of uncultured amniotic-fluid cells” by George Hug, Shirley Soukup, Mary Ryan and Gail Chuck. The New England Journal of Medicine April 19, 1984 ● Draft of French Anderson article on Human Gene Therapy for Science. He seeking comments. May 23, 1984 ● Handwritten notes

Folder 4 - Articles various ● Article- “A sensitive new prenatal test for sickle-cell anemia” by Judy C. Chang and Yuet Wai Kan. The New England Journal of Medicine July 1, 1982 ● Article- “NIH censure for Dr. Martin Cline” by David Dickson. Nature Vol 291 4 June 1981 ● Article- “Gene therapy: overregulation may be hazardous to our health” by Henry I. Miller. Gene 27 1984 ● Article- “New gene probes may permit early predictions of disease” by Jerry E. Bishop. Wall Street Journal. 12/23/83 Cook-Deegan Box 18/28

● Article- “The cloning revolution meets human genetics” by Bob Williamson. Nature Vol. 293 3 September 1981 ● Memo from Barbara Filner to Advisory Group on Genetic Manipulation of the Human Genome- attached is two draft documents ● Article- “Clones on the range” by Gina Maranto. Discover August 1984 ● Article-“ A step nearer gene therapy” by David Weatherall. No source, date ● Article- “Attack on the gene splicers” by Gina Maranto. Discover August 1984 ● Article- “The birthpangs of a new science” No author. The Economist July 14, 1984 ● Article- “Recombinant DNA techniques in diagnostic and preventative medicine” by Stephen Hodgkinson and Peter Scambler. Source illegible ● Report- Prospects for Gene Replacement Therapy by Stephen M.W. Chang and C.T. Caskey. ● Letter from Martin J. Cline to CD- May 7, 1985. Attached is manuscript- Insertion of a foreign gene into hematopoietic cells of two patients with β- thalassemia, by Martin J. Cline, Karen Mercola, Carol Le Fevre and Vilma Gabutti ● Photocopies of slides ● CD travel request form May 9, 1985 ● Article- “The beginning of the end of a dilemma” by Miranda Robertson. Nature vol 306 222 ● Article- “Quick fixes not on the cards” by Stephen Budiansky. Nature Vol. 306 1 Decembper 1983 ● Article- “Molecular genetics for the clinician” No author. The Lancet February 4, 1984 ● Article-“Closing in on a killer gene” by Gina Kolata. Discover March 1984 ● Article- “Molecular diagnostic medicine” by Peter Newmark. Nature Vol 307 5 Jan 1984 ● Article- “On the track of genetic disease” by David Weatherall. New Scientist 5 April 1984 ● Article- “Immunoreconstitution in severe combined immunodeficiency after transplantation of HLA-haploidentical, T-cell-depleted bone marrow” by W. Frendrich, U. Vetter, B. Heymer, Y. Reisner, S.F. Goldmann, T.M. Fliedner, H.H. Peter and E. Kleihauer. The Lancet April 7, 1984 ● Article- “Still more about gene transfer” by Jean L. Marx. Science Vol. 218 29 October 1982

Folder 5 - NICHD public forum on gene therapy 11/21/83 ● Transcript- NICHD Public Forum on Gene Therapy- November 21, 1983 Cook-Deegan Box 18/28

● Article- “Human gene therapy: scientific and ethical considerations” by W. French Anderson. The Journal of Medicine and Philosopy 10 1985 ● Article- Letter from Judigh A. Johnson to CD- August 14, 1984. Asking for comments on attached paper. Attached is draft of “Human gene therapy” dated August 14, 1984 ● Article- “Gene therapy in human beings: when is it ethical to begin” by W. French Anderson and John C. Fletcher ● Article- “Of genes and little boys” by Blaine Harden. The Washingtonian June 1984 ● Handwritten note

Folder 5 - Articles ● Report- “Treatment of inherited metabolic diseases: current status and prospects” by Robert J. Desnick. ● Handwritten note ● Memo from CD to Gene therapies. 23 May 1984. Attached is French Anderson article on Human Gene Therapy for Science. ● Article- “Treatment is nearing for genetic defects” by Harold M. Schmeck Jr. No source April 10, 1984 ● Article- “Cloning of a gene may bring cure for rare Gaucher’s disease” by Sandy Rovner. WP July 21, 1984 ● Article- “New efforts to cure disease by gene therapy predicted” by Harold M. Schmeck Jr. No date, source ● Article- “Gene therapy on humans: more tests on animals said necessary” by Kim McDonald. The Chronicle of Higher Education November 30, 1983 ● Article- “Martin Cline loses appeal on NIH grant” by Marjorie Sun. Science Vol 218 1 October 1982 ● Article- “Cline loses two NIH grants” by Marjorie Sun Science Vol. 214 11 December 1981 ● Article- “Gene therapy pioneer draws Mikadoesque rap” by Nicholas Wade. Science 12 June 1981 ● Article- “Gene therapy: proceed with caution” by Clifford Grobstein and Michael Flower. The Hastings Center no date ● Article-“UCLA gene therapy racked by friendly fire” by Nicholas Wade ● Article- “Gene therapy caught in more entanglements” by Nicholas Wade. Science – illegible info

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Folder 6 - Articles and sickle cell fundamentals pamphlet ● Article-“The Rifkin resolution: less than meets the eye” by Peter Dorfman. Genetic Engineering News July/August 1983 ● Report- Manipulating Life: Ethical Issues in Genetic Engineering by World Council of Churches, Geneva No date ● Article- “Institutional biosafety committees and public participation: assessing an experiment” by Diana B. Dutton and John L. Hochheimer. Nature Vol 297, 6 May 1982 ● Booklet- What Are the Facts About Genetic Disease? The National Institute of General Medical Sciences- NIH. ● Article- “Techniques of prenatal diagnosis” No author. American Scientist Vol 65 1977 ● Article- “Enzyme therapy: problems and solutions” by John S. Holcenberg. Ann. Rev. Biochem. 1982 51 ● Article- “Designer drugs and pill pumps” by John Langone. Discover January 1984 ● Booklet- Sickle Cell Fundamentals

Folder 7 - Memo to Bernard Talbot re: Cline case rewrite, 1984 ● Memo to Bernard Talbot from CD. 2 October 1984. Re: Cline case rewrite for OTA background paper on Human Gene Therapy

Folder 8 - Handwritten notes ● A packet of handwritten notes

Folder 9 - Meeting minutes- Recombinant DNA Advisory Committee, June 1983 ● Department of Health and Human Services Public Health Service National Institutes of Health. Recombinant DNA Advisory Committee Working Group for Development of Response to President’s Commission’s Report on Ethical and Social Issues- Minutes of Meeting June 24, 1983

Folder 10 - Federal Register- Recombinant DNA Research; Actions Under Guidelines, April 1984 ● Federal Register Vol 49 No 81, April 25, 1984

Folder 11 - DRAFT- Points to consider in the production and testing of new drugs ● Draft Report- Points to Consider in the Production and Testing of New Drugs and Biologicals Produced by Recombinant DNA Technology” Office of Biologics Research and Review- National Center for Drugs and Biologics. November 7, 1983

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Folder 12 - Articles ● Handwritten notes ● Microfiche of “The biological revolutions: challenge for the church” by F. Seydel, “Advances in genetic engineering: great promises or great dangers? By S. Ramirez, “Whom do we designate to play God?” by J. Rifkin. “Corp genetic variability: why does it matter?” by A. Parker. “The priority for life and its inevitable qualifications” by J. Nelson ● Article- “The potentials of inserting new genetic information” No author. The New England Journal of Medicine Vol 303 No. 22, November 27, 1980 ● Article- “Human in-vitro feritlisation and embryo transfer” No author. The Lancet November 19, 1983 ● Article- “Gene therapy” by Bob Williamson. Nature Vol 298 29 July 1982 ● Book chapter from Recombinant DNA: A Short Course. James D. Watson, John Tooze and David T. Kurtz. Scientific American Books ● Article- “The clergy ponder the new genetics” by Julie Ann Miller. Science News Vol 125 ● Article- “NIH advised to set up panel to review plans for ‘gene therapy’ on humans” The Chronicle of Higher Education. 1/4/84 ● Article- “Sanctioned gene transplant in humans near” by Globe Staff. Boston Globe May 4, 1984 ● Book chapter- “Progress in bone marrow transplantation” by Robert A. Good. Arnold O. Beckman Conference in Clinical Chemistry. 1981 ● Article- “Rapid fetal sex determination in first trimester prenatal diagnosis by dot hybridization of DNA probes” No author. The Lancet March 10, 1984 ● Article- “Recent developments in the prenatal diagnosis of genetic diseases and birth defects” by Charles J. Epstein, David R. Cox, Steven A. Schonberg and W. Allen Hogge. Ann. Rev. Genet. 1983 17 ● Copy of a journal- Technology in Society Vol 5, No. 1, 1983. ● Article- “Reintroduction of genetically transformed bone marrow cells into mice” by Bob Williamson. Nature Vol. 284 3 April 1989 ● Article- “Frequency of genetic disease” by Herbert A. Lubs. Genetic Counseling 1977 ● GeneWatch Vol 1, No 2 ● Birth Defects Reprint Series. Genetic Disorders by Herbert A. Lubs and Marie- Louise Lubs.

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Folder 1 - Genetics Digest- Foundation for Blood Research- Oct. 1984 ● Genetics Digest- Foundation for Blood Research October 1984

Folder 2 - Articles ● Genetics and Neurology ● Article- “Diagnosis of inherited disease” by Richard A. Shafter. Wall Street Journal 11/4/83 ● Article- “Trangenic organisms and development” by William Petri. Nature Vol. 299 30 September 1982 ● Article- “Somatic cell genetics and gene families” by Peter D’Eustachio and Frank H. Ruddle No source 27 May 1983 ● Article- “Analysis of clinical specimens by hybridization with probe containing repetitive DNA from plasmodium falciparum” by Lena Franzen, Gunnar Westin, Raad Shabo, Lena Aslund, Hedvig Perlman, Torgny Persson, Hans Wigzell and Ulf Pettersson. The Lancet 10 March 1984 ● Article- “Race, IQ and grandparents” by James Flynn. New Scientist 5 April 1984 ● Article- “Of mice and men” by J.B. Martin. Nature Vol. 307 5 January 1984 ● Article- “Carrier detection by direct gene analysis in a family with haemophilia B (factor IX deficiency” by I.R. Peake, B.L. Furlong, A.L. Bloom. The Lancet February 4, 1984 ● Article- “DNA sequences flanking the insulin gene on chromosome 11 confers risk of atherosclerosis” ● Article- “Educating physicians in the art of counseling for genetic disorders” by Verle E. Headings. Perspectives in Biology and Medicine 25, 3, Spring 1982

Folder 3 - CRS Library of Congress- Abortion: Selective References 1981-1982 ● List of books about abortion in the Library of Congress from 1981-1982

Folder 4 - Articles and handwritten notes ● Handwritten notes ● Article- “Genetic correlates of criminal behavior” by William F. Gabrielli, Jr. and Sarnoff A. Mednick. American Behavioral Scientist Vol 27, No 1. September/ October 1983 ● Chapter 4 “The Molecular genetics of Thalassemia”. From H. Hamis and A. Hushhorn (eds) Advancing in Human Genetics. New York, Premium Press, 1981. Vol 2 ● Article- “Parliamentary assembly of the Council of Europe”. 2 Biotechnology Law Report 17 January 1983 ● Virginia Law Review- Moral Problems and Ethical Issues in Prospective Human Gene Therapy, by John C. Fletcher. April 1983 Vol 69, No 1 ● Article-“Ethics and trends in applied human genetics” by John C. Fletcher. Birth Defects: Original Article Series, Vol 19, No. 5 1983 ● Article- “New genetics and old values” by Leon E. Rosenberg. The Pharos Winder 1983 ● Article- “ Genetic engineering” by Seymour Siegel. Linacre Quarterly February 1983 Cook-Deegan Box 19/28

● Article- “Human gene therapy: scientific and ethical considerations” by W. French Anderson. The Journal of Medicine and Philosopy 10 1985 ● Article- Letter from Judigh A. Johnson to CD- August 14, 1984. Asking for comments on attached paper. Attached is draft of “Human gene therapy” dated August 14, 1984 ● Article- “Gene therapy in human beings: when is it ethical to begin” by W. French Anderson and John C. Fletcher ● Article- “Of genes and little boys” by Blaine Harden. The Washingtonian June 1984 ● Handwritten note

Folder 5 - Articles ● Report- “Treatment of inherited metabolic diseases: current status and prospects” by Robert J. Desnick. ● Handwritten note ● Memo from CD to Gene therapies. 23 May 1984. Attached is French Anderson article on Human Gene Therapy for Science. ● Article- “Treatment is nearing for genetic defects” by Harold M. Schmeck Jr. No source April 10, 1984 ● Article- “Cloning of a gene may bring cure for rare Gaucher’s disease” by Sandy Rovner. WP July 21, 1984 ● Article- “New efforts to cure disease by gene therapy predicted” by Harold M. Schmeck Jr. No date, source ● Article- “Gene therapy on humans: more tests on animals said necessary” by Kim McDonald. The Chronicle of Higher Education November 30, 1983 ● Article- “Martin Cline loses appeal on NIH grant” by Marjorie Sun. Science Vol 218 1 October 1982 ● Article- “Cline loses two NIH grants” by Marjorie Sun Science Vol. 214 11 December 1981 ● Article- “Gene therapy pioneer draws Mikadoesque rap” by Nicholas Wade. Science 12 June 1981 ● Article- “Gene therapy: proceed with caution” by Clifford Grobstein and Michael Flower. The Hastings Center no date ● Article-“UCLA gene therapy racked by friendly fire” by Nicholas Wade ● Article- “Gene therapy caught in more entanglements” by Nicholas Wade. Science – illegible info

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Folder 6 - Articles and sickle cell fundamentals pamphlet ● Article-“The Rifkin resolution: less than meets the eye” by Peter Dorfman. Genetic Engineering News July/August 1983 ● Report- Manipulating Life: Ethical Issues in Genetic Engineering by World Council of Churches, Geneva No date ● Article- “Institutional biosafety committees and public participation: assessing an experiment” by Diana B. Dutton and John L. Hochheimer. Nature Vol 297, 6 May 1982 ● Booklet- What Are the Facts About Genetic Disease? The National Institute of General Medical Sciences- NIH. ● Article- “Techniques of prenatal diagnosis” No author. American Scientist Vol 65 1977 ● Article- “Enzyme therapy: problems and solutions” by John S. Holcenberg. Ann. Rev. Biochem. 1982 51 ● Article- “Designer drugs and pill pumps” by John Langone. Discover January 1984 ● Booklet- Sickle Cell Fundamentals

Folder 7 - Memo to Bernard Talbot re: Cline case rewrite, 1984 ● Memo to Bernard Talbot from CD. 2 October 1984. Re: Cline case rewrite for OTA background paper on Human Gene Therapy

Folder 8 - Handwritten notes ● A packet of handwritten notes

Folder 9 - Meeting minutes- Recombinant DNA Advisory Committee, June 1983 ● Department of Health and Human Services Public Health Service National Institutes of Health. Recombinant DNA Advisory Committee Working Group for Development of Response to President’s Commission’s Report on Ethical and Social Issues- Minutes of Meeting June 24, 1983

Folder 10 - Federal Register- Recombinant DNA Research; Actions Under Guidelines, April 1984 ● Federal Register Vol 49 No 81, April 25, 1984

Folder 11 - DRAFT- Points to consider in the production and testing of new drugs ● Draft Report- Points to Consider in the Production and Testing of New Drugs and Biologicals Produced by Recombinant DNA Technology” Office of Biologics Research and Review- National Center for Drugs and Biologics. November 7, 1983

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Folder 12 - Articles ● Handwritten notes ● Microfiche of “The biological revolutions: challenge for the church” by F. Seydel, “Advances in genetic engineering: great promises or great dangers? By S. Ramirez, “Whom do we designate to play God?” by J. Rifkin. “Corp genetic variability: why does it matter?” by A. Parker. “The priority for life and its inevitable qualifications” by J. Nelson ● Article- “The potentials of inserting new genetic information” No author. The New England Journal of Medicine Vol 303 No. 22, November 27, 1980 ● Article- “Human in-vitro feritlisation and embryo transfer” No author. The Lancet November 19, 1983 ● Article- “Gene therapy” by Bob Williamson. Nature Vol 298 29 July 1982 ● Book chapter from Recombinant DNA: A Short Course. James D. Watson, John Tooze and David T. Kurtz. Scientific American Books ● Article- “The clergy ponder the new genetics” by Julie Ann Miller. Science News Vol 125 ● Article- “NIH advised to set up panel to review plans for ‘gene therapy’ on humans” The Chronicle of Higher Education. 1/4/84 ● Article- “Sanctioned gene transplant in humans near” by Globe Staff. Boston Globe May 4, 1984 ● Book chapter- “Progress in bone marrow transplantation” by Robert A. Good. Arnold O. Beckman Conference in Clinical Chemistry. 1981 ● Article- “Rapid fetal sex determination in first trimester prenatal diagnosis by dot hybridization of DNA probes” No author. The Lancet March 10, 1984 ● Article- “Recent developments in the prenatal diagnosis of genetic diseases and birth defects” by Charles J. Epstein, David R. Cox, Steven A. Schonberg and W. Allen Hogge. Ann. Rev. Genet. 1983 17 ● Copy of a journal- Technology in Society Vol 5, No. 1, 1983. ● Article- “Reintroduction of genetically transformed bone marrow cells into mice” by Bob Williamson. Nature Vol. 284 3 April 1989 ● Article- “Frequency of genetic disease” by Herbert A. Lubs. Genetic Counseling 1977 ● GeneWatch Vol 1, No 2 ● Birth Defects Reprint Series. Genetic Disorders by Herbert A. Lubs and Marie- Louise Lubs.

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Folder 1 - Linking diseases to their genes ● Article- “Linking diseases to their genes” by Lyn J. Caves. BioScience Vol. 34, No. 7

Folder 2 - Preliminary outline for human gene therapy background paper ● Preliminary outline for human gene therapy background paper- 21 February 1984

Folder 3 - Meeting minutes- Recombinant DNA Advisory committee, Feb 1984 ● Department of Health and Human Services Public Health Service National Institutes of Health Recombinant DNA Advisory Committee- Minutes of Meeting February 6, 1984

Folder 4 - Articles ● Article- “Going for gold in the baby business” by Fern Schumer Chapman. September 17, 1984 Fortune ● Artilce- “In search of the gene” by Veronica van Hevningen. Nature Vol 311, 1984 ● Article- “Do we need gene therapy? (letter)” by Marcus E. Pembrey. Nature Vol. 311 20 September 1984 ● Article- “What’s new in biotechnology” No author. The New York Times. November 18, 1984 ● Article- Outlook January 1984. “Chorionic villus biopsy” No author. ● Article- “Prospects for human gene therapy” by W. French Anderson. Science Reprint Series 26 October 1984. Vol. 226

Folder 5 - Correspondence and handwritten notes ● List of people to circulate something to ● Memo from CD to Nan Newell, GSK, Ellie Pitts and Others Interested in Gene Therapy. 15 February 1984. Re: Meeting with Jim Jensen from Gore’s subcommittee ● Handwritten notes ● CV for Mary Anne Campbell Spence ● List of people, Guy Ehrling circled ● Letter from Roz Herlands to CD. February 23, 1984. Thanking him for books on genetic screening ● Handwritten notes ● Letter from Barbara Schneider to CD. January 30, 1984. Giving him permission t contact faculty members ● Memo from Lisa to Steve and Cd. 6/25/84. Legal Issues in Gene Therapy Part II ● Memo from Lia to CD- 7/30/84. Effect of my time problems on gene therapy

Folder 6: Subcommittee on investigations re: oversight, committee on Science and Technology material ● Committee on Science and Technology U.S. House of Representatives Subcommittee on Investigations and Oversight June 6, 1984. Witness statements Folder 7: Symposium material Cook-Deegan Box 20/28

● Brochure: Genetics and the Law- Third National Symposium. April 2-4, 1984 th ● List of participants for the 16 Miami Winter Symposium- 16-20 January 1984

Folder 8 - Articles ● Article- “Looking at genes” by Henry M. Kroenenberg. The New England Journal of Medicine. July 1, 1982 ● Article- “Recombinant DNA and genetic disease- answers and questions” No author. The Lancet, December 17, 1983 ● Article- “Molecular biology and lymphoma” No author. The Lancet January 7, 1984 ● Article- “Gene cloned for nerve wrapping” No author. New Scientist 3 November 1983

Folder 9 - Second preliminary outline for human gene therapy background paper ● Memo from CD to Gene therapists. 16 February 1984. Sending an outline ● Second preliminary outline

Folder 10 - revised outline and plan for gene therapy report ● Memo from CD to Gene therapists. 25 July 1984. Draft table of contents for human gene therapy report

Folder 11 - Articles ● Articles-“Controversy over recombinant DNA research” by William A. Blanpled. C&EN October 31, 1983 ● Article- “The theological letter concerning the moral arguments against genetic engineering of the human germline cells” No Author. From the article circulated by Jeremy Rifkin of the Council on Economic Trends June 8, 1983 ● Article- “Molecular evidence for new mutation at the hprt locus in Lech-Nyhan patients” by Thomas P. Yang, Pragna I. Patel, A. Craig Chinault, John T. Stout, Laird G. Jackson, Beth M. Hildebrand and C. Thomas Caskey. Nature 310 1984 ● Article- “Genetic correlates of criminal behavior” by William F. Gabrielli, Jr. and Sarnoff A. Mednick. No date, source

Folder 12: meeting materials- human gene therapy subcommittee, June 1, 1990 and June 30-31, 1990 ● Letter from Executive Secretary to Members, Human Gene Therapy Subcommittee. June 1, 1990. About meeting on June 1, 1990 ● Brochure- Gene Therapy for Human Patients- Information for the General Public. Department of Health and Human Services ● Packet of information to be considered before July 30-31, 1990 meeting

Folder 13 - Meeting materials- human gene therapy subcommittee, June 1, 1990 ● Packet of information to consider before June 1, 1990 meeting.

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Folder 14 - Human gene therapy background papers- Office of Technology Assessment ● Human gene therapy background paper- Office of Technology Assessment 1984

Folder 15 - Federal Register announcements ● Federal Register January 22, 1985. Part III. ● Federal Register December 31, 1984, Part II ● Federal Register September 13, 1984. Part II and III

Folder 16 - Business cards and points to consider draft ● Business card of Herman W. Lewis, of National Science Foundation ● Business card of Patricia Williams of F-D-C Reports, Inc. ● Points to Consider in the Design and Submission of Human Somatic Cell Gene Therapy Protocols. Draft no date

Folder 17 - Meeting materials- working group on human gene therapy, November 16, 1984 ● Memo from Executive Secretary to Working Group on Human Gene Therapy Recombinant DNA Advisory Committee. November 2, 1984. About November 16, 1984 meeting. Attached are more materials/ timetable

Folder 18 - Working group on human gene therapy materials ● Massachusetts General Hospital Subcommittee on Human Studies. Summary Statements and Checklist to be Prepared by Investigator for Use of Members of the Subcommittee on Human Studies. ● Recombinant DNA Advisory Committee Working Group on Human Gene Therapy member list ● Memo from LeRoy Walters to Members, Working Group on Human Gene Therapy. Attached are sections of second draft ● Section of Document Entitled “Points to Consider in the Design and Submission of Somatic Cell Gene Therapy Protocols” by Robert F. Murray and LeRoy Walters. November 12, 1984 ● Points to Consider- Introduction ● Memo from Robert F. Rich to William J. Gartland, Jr. October 10, 1984. Cannot attend meeting, attached is written comments ● Points to Consider in the Characterization of Cell Lines Used to Produce Biologicals. Office of Biologics Research and Review Center for Drugs and Biologics. June 1, 1984 ● Form for IND Medical Review Guidelines. ● Article- “The value for fundamental science” by Leon M. Lederman. Scientific American November 1984, Vol. 251, No. 5

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Folder 19 - Working group on human gene therapy materials ● Memo from Chair, Working group on Human Gene Therapy, RAC to Members, Working Group on Human Gene Therapy, RAC. Additional background materials for October 12 meeting. October 2, 1984. Attached is draft entitled “Points to Consider in the Design and Submission of Gene Therapy Protocols” and written suggestions and preprint of an article written by French Anderson ● The NIH Guidelines for Research Involving Recombinant DNA Molecules, by Elizabeth Ann Milewski. No date ● Member list with Lowell Harmison’s address photocopied onto it ● Memo from CD to Members of Human Gene Therapy Working Group of RAC. 9 November 1984. About OTA draft of Human Gene Therapy Background Paper ● Handwritten notes ● About the Recombinant DNA Advisory Committee ● Member list of working group ● Federal Register January 22, 1985 Part III ● Memo from Executive Secretary to Working Group on Human Gene Therapy Recombinant DNA Advisory Committee. January 22, 1985. About April 1, 1985 meeting ● Memo from Executive Secretary to Working Group on Human Gene Therapy. January 22, 1985. About the “Points to Consider in the Design and Submission of Human Somatic-Cell Gene Therapy Protocols” report ● Request for public comment on :Points to Consider in the Design and Submission of Human Somatic-Cell Gene Therapy Protocols” ● Memo from Executive Secretary to Members, Working Group on Human Gene Therapy. Attached are comments received to date on above report in the Federal Register on January 22

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Folder 1 - Human gene therapy working group misc. materials ● Misc. notes from meeting of 1 April, 1985 ● Member list of Recombinant DNA Advisory Committee Working Group on Human Gene Therapy ● Letter from Terri Goldberg to Margaret Heckler. March 20, 1985. Writing on behalf of Executive Council of the Committee for Responsible Genetics ● Letter from Frank E. Young to CD. October 7, 1985. About regulation of biotechnology ● Approval process for gene therapy protocols ● Letter from Gretchen S. Kolsrud and CD to Frank E. Young. 13 August 1985. Thanking him for meeting and NIH review process ● Outline of the Working Group on Human Gene Therapy NIH Recombinant DNA Advisory Committee ● Memo from Executive Secretary to Members of the Working Group on Human Gene Therapy. March 7, 1985. Attached are comments received to date on the Points to Consider in the Design and Submission of Human Somatic-Cell Gene Therapy Protocols published in the Federal Register on Jan 22 ● Memo from Executive Secretary to Members of the Working Group on Human Gene Therapy. March 22, 1985. Attached are comments received to date on the Points to Consider in the Design and Submission of Human Somatic-Cell Gene Therapy Protocols published in the Federal Register on Jan 22 ● Empty envelope ● Opinion of the United States Court of Appeals for the District of Colombia Circuit. No 84-5314 Foundation on Economic Trends et al. v. Margaret M. Heckler December 5, 1984 ● Handwritten letter from LeRoy to CD. August 13, 1985 ● Letter from Henry I. Miller to William J. Gartland, Jr. September 13, 1985. Attached is reviewed copy of “Points to Consider” ● Outline of the Working Group on Human Gene Therapy NIH Recombinant DNA Advisory Committee ● Memo from Executive Summary to Working Group on Human Gene Therapy Recombinant DNA Advisory Committee. October 12, 1984. About meeting. Attached is Points to Consider

Folder 2 - Articles- chorionic villi sampling ● Brochure- Diagnostic ultrasound imaging in pregnancy NIH. Consensus Statement Vol. 5, No. 1 ● Article-“Scientists cite hazards in new test for genetic abnormalities in fetus” by Philip J. Hilts. Washington Post no date ● Article- “Caution about chorionic villi sampling in the first trimester (letter) by Frederick Hecht, Barbara K. Hecht, Helen A. Bixenman. The New England Journal of Medicine 310(21) May 24, 1984 ● Article- “Consequences of chorionic biopsy (letter)” by A. Lippman. New England Journal of Medicine April 26, 1984 ● Empty envelope ● CVS Latest News 14 February 1984 Cook-Deegan Box 21/28

● CVS Latest News 9 April 1984 ● CVS Latest News 25 June 1984 ● CVS Latest News 26 August 1984

Folder 3 - Gene therapy- interviews and misc. ● Handwritten notes ● Brochure-Huntington’s Disease “Discovery” Fact Sheet May 1, 1984 ● Handwritten notes ● Memo from “Dr. Who” to Gene Therapists. March 2, 1984. Re: statement of work for the diseases and traits chapter of the human gene therapy background paper

Folder 4 - Articles- oncogenes and drosophila ● Article- “New oncogene targets?” by J.L.M. Science Vol 224 ● Article- “Expression of cellular oncogenes in human malignancies” by Dennis J. Slamon, Jean B. deKernion, Inder M. Verma and Martin J. Cline. Science Vol 224 20 April 1985 ● Article- “Transposition of cloned p elements indo drosophila germ line chromosomes” by Allan C. Sprading and Gerald M. Rubin. Science Vol. 218 22 October 1982 ● Article- “Correct developmental expression of a cloned alcohol dehydrogenase gene transduced into the drosophila germ line” by David A. Goldberg, James W. Posakony and Tom Maniatis. Cell 34, August 1983 ● Article- “Genetic transformation of drosophila with transposable element vectors” by Gerald M. Rubin and Allan C. Spradling. Science Vol. 218 22 October 1982 ● Article- “Transposition of cloned p elements into drosophila germ line chromosomes” by Allan C. Spradline and Gerald M. Rubin ● Article- “Genetic transformation of drosophila with transposable element vectors” by Gerald M. Rubin and Allan C. Spradling. Science Vol. 218 22 October 1982 ● Article- “Malignant activation of a k-ras oncogene in lung carcinoma but not in normal tissue of the same patient” by Eugenio Santos, Dioniso Martin-Zanca, E. Premkumar Reddy, Marco A. Pierotti, Giuseppe Della Porta, Mariano Barbacid. 17 February 1984 Science Vol. 223 ● Article- “Correct developmental expression of a cloned alcohol dehydrogenase gene transduced into the drosophila germ line” by David A. Goldberg, James W. Posakony and Tom Maniatis. Cell 34, August 1983 ● Article- “Mutant gene causing cancer isolated” by Victor Cohn. Washington post 2/9/84 ● Article-“Somatic activation of ras-K gene in a human ovarian carcinoma” by L.A. Feig. Science Vol. 223

Folder 5 - Chapter III human genetic diseases- something illegible ● Memo to Gene therapy staffers from Elli. March 9, 1984. Attached are sections B and C of Chapter III

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Folder 6 - “the privacy and control of genetic information” –draft ● Memo from Steve Eckman to Roger Herdman. August 7, 1984. Attached is draft for the Gene Therapy Report “The Privacy and Control of Genetic Information” ● Appendix E- Privacy and Controls of Genetic Information by Stephen K. Eckman- draft

Folder 7 - Articles ● Article- “Thinking the unthinkable about genetic screening” by Thomas H. Murray. June 1983 Across the board ● Press Comm. Screening and Counseling for Genetic Conditions. NO date. ● Legislative remedies to abuses of genetic knowledge. Section of Genetic Politics pg 104 ● Article- “Moral obligations and the fallacies of ‘genetic control’” by Marc Lappé. Reprinted from Theological Studies Vol. 33, No. 3 September 1972 ● Section of Genetic Prophecy: beyond the double helix. Pg 250 ● Article- “At risk for Huntington’s Disease: who should know what and when?” by Albert Rosenfeld. The Hastings Center. 3994 ● Pages from The New Genetics and Clinical Practice by D.J. Weatherall. 1982 ● Mapping by recombinant DNA techniques: Skolnick/Willard/Menlove. Pg 215 ● Article- “New wave computer crime” by William D. Marchack and Jennet Conant and Michael Rogers. Newsweek August 29, 1983 ● Article- “Chrysler unveils new comp plan” Week of January 5, 1981

Folder 8 - Diseases section draft ● Memo from Dr. Now to Gene therapists. April 5, 1984. Attaches is Larry Wissow’s draft for the “diseases” section of the human gene therapy back ground paper ● Dr. Wissow’s contract and statement of work

Folder 9 - Articles ● Article-“Informed consent statutes and the decisionmaking process” by Lori B. Andrews. The Journal of Legal Medicine Vol. 5, No. 2 1984 ● Article- “Human in vitro fertilization and the law” by Martin M. Quigley and Lori B. Andrews. Fertility and Sterility Vol. 42 No. 3 September 1984

Folder 10 - Correspondence and mailing list ● Memo from CD to Jack Gibbons. 19 December 1984. RE: staff performance in preparing Human Gene Therapy Background Paper ● Letter from CD to Albert Gore, Jr. No date. Thanking him for help on background paper ● Mailing list ● Letter from Gretchen S. Kolsrud and CD to Franck E. Young. 13 August 1985. Thanking him for meeting. ● Letter from John H. Gibbons to Albert Gore, Jr. Thanking him for letter of request for a Technical memorandum on genetic engineering. ● Letter from CD to Lawrence Wissow. September 17, 1984. Schedule for September 25 workshop

Folder 11- Human Gene Therapy background paper draft ● Human Gene Therapy Background Paper August 1984 Draft. With list of commenters and comments written on draft

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Folder 1 - Correspondence re: human gene therapy report release, C-SPAN broadcast, misc. ● Draft letter from CD to no one. Info about Human Gene Therapy Background Paper and release date ● Letter from Robert E. Mitchell to CD- December 26, 1984. Appreciates being sent Paper ● Mammalian Genetics Study Section member list ● Letter from James E. Bowman to Gretchen Kolsrud December 31, 1984. Thanking him for Paper ● Letter from Jane Scully to CD- 10 January 1985. Thanking him for paper ● Letter from Debbie Carlson to DC January 6, 1985. Requesting information about human gene therapy ● Letter from Mrs. Michael G. Toudemaus. December 26, 1984. Asking for copy of report, son has Duchenne ● Letter from Guy A. Caldwall to Commission on Bioethics. December 27, 1984. Asking for copy of Paper ● Letter from W. French Anderson to CD. January 10, 1985. Attached are copies of Science article “Prospects for Human Gene Therapy” ● Letter from Daniel Callahan to CD- January 9, 1985. Thanking him for Paper ● Letter from Steve Eckman to CD- January 23, 1985. Thanking him for Paper ● Letter from Sonja M. Nordling to Albert Gore. December 22, 1984. Asking if her intelligence will be affected if gene therapy can cure schizophrenia. ● Letter from Dan S. Morgenstern to CD- December 18, 1984. Wants info about Glucose-6-Phospitase enzyme deficiency ● Letter from CD to Gore- December 20, 1984. Thanking him for help with Paper ● Memo from CD to Jack Gibbons. Thanking various staff ● Letter from W.J. Whelan to November 30, 1984. Thanking him for sending Paper ● Letter from CD to Those interested in “Germline gene therapy” 11 February 1984- Attached is possible list ● Letter from Stanley N. Cohen to CD- December 31, 1984. Thanking him for Paper ● Letter from Clifford Grobstein to CD- January 8, 1985. Thanking him for Paper ● Letter from Arno G. Motulsky to CD- 3 January 1985. Thanking him for Paper ● Letter from William L. Nyan to CD- December 28, 1984. Thanking him for Paper ● Evaluation of Research Proposal-The Ethics Human Germ-Line Intervention ● Letter from CD to Michael T. Marron. May 29, 1985. Asking to be included in the Biotechnology Discussion Group ● Letter from Michael T. Marron to CD- May 8, 1985. About Biotechnology Discussion Group and list of attendees ● CV of Bjorn Elmquist May 17, 1985 ● Letter from Robert Williamson to CD- June 19, 1985. Asking for another copy of paper ● Letter from John A. Phillips to CD- June 21, 1985. Attached is schedule for Fall Symposium- The New Genetics and Clinical Medicine ● Letter from David to CD- July 9, 1985. Thanking him for Paper ● Letter from SKS to CD- No date. About publications and attached Paper requests Cook-Deegan Box 22/28

● Letter from Gretchen S. Kolrud and CD to Frank E. Young. August 13, 1985. Thanking him for meeting and other info ● Letter from CD to R. Williamson, 8 September 1985. Sending copies of Paper ● Letter from R. Williamson to CD- 3 September 1986. Asking for more copies ● Letter from C. Thomas Caskey to CD- November 30, 1984. Thanking him for Paper ● Letter from Jane Hutchings to Teresa Schwab- November 30, 1984. About referencing a diagram ● Letter from Lori Andrews to November 15, 1984. Suggestions for draft ● Letter from J. Robert Nelson to CD- Thanking him for Paper ● Letter from Tana Nobles to CD- December 19, 1984. Thanking him for giving her hope of a cure for epidermolysis bullosa. ● Letter from Stephen K. Eckman to CD- November 24, 1984. Thanking him for Paper ● Letter from Zsolt Harsanyi to CD. November 8, 1984- Suggestions for draft ● Handwritten notes ● List of references? ● Handwritten letter from Lori to CD. September 25, 1984. Suggestions for draft. ● Appendix E- Privacy and Control of Genetic Information ● Letter from Albert Rosenfeld to CD- September 17, 1984- About Tom McGurn’s letter and September 25 workshop ● List of suggestions ● Letter from Lori B. Andrews to CD- October 5, 1984- Thanking him for opportunity to participate in Advisory Panel. About legal issues ● Letter from J. Robert Nelson to CD- No date. List of suggestions ● Comments from T. Friedman ● Handwritten notes ● Handwritten notes ● Letter from Yale H. Bohn to CD- No date. Review of draft Paper ● Letter from Judith C. Areen to CD- October 8, 1984. Attached are suggestions ● Letter from William L. Nyhan to CD- October 15, 1984. Review of draft ● Memo from CD to Bernard Talbot. 2 October 1984- Cline case rewrite for OTA Paper ● Rewrite of Cline story ● Letter from LeRoy Walters to CD- October 9, 1984. Review of draft ● Letter from Bob to CD- September 26, 1984- Review of draft ● Letter from J. Robert Nelson to CD- September 25, 1984- List of suggestions ● List of suggestions from Ola M. Huntley ● List of suggestions from T. Friedman ● List of suggestions from James E. Bowman ● Letter from Albert Rosenfeld to CD- September 28, 1984. Thoughts on workshop and Hastings Center Report ● Handwritten notes ● Letter from Theodore Friedman to CD- September 17, 1984- Suggestions for draft ● Draft cover page with comments on back ● Letter from LeRoy Walters to CD- October 9, 1984. Suggestions for draft Cook-Deegan Box 22/28

Folder 2 - Meeting minutes Recombinant DNA advisory committee, Dec 16, 1985 ● Meeting minutes for December 16, 1985 meeting ● Memo from Executive secretary to Members of Human Gene Therapy Subcommittee. July 17, 1986. Attached is agenda, Establishment of the Biomedical Ethics Board and Selected articles on human gene therapy ● Letter from Henry I. Miller to W.J. Gartland, Jr. July 25, 1986. About FDA’s views on revision of NIH guidelines ● Federal Register June 25, 1986, Part III ● Outline of the Working Group on Human Gene Therapy NIH Recombinant DNA Advisory Committee September 23, 1985 ● Letter from Howard M. Temin to William J. Gartland, Jr. July 22, 1986. Concerns relating to B.1.B. (1).(b). ● Federal Register June 25, 1986, Part III ● Member list of Subcommittee ● Agenda October 15, 1986 ● Draft- U.S. Government Formula for Gene Transplants August 8, 1986 ● Comment on the proposed addition to the NIH guidelines submitted by the Committee for Responsible Genetics- C. Grobstein ● Recommendation to RAC-Gottesman ● Committee for Responsible Genetics recommendations ● Information Concerning the Filing of a “Notice of Claimed Investigational Exemption for a New Drug (IND)” ● Member list of working group ● Outline of the Working Group on Human Gene Therapy NIH Recombinant DNA Advisory Committee September 23, 1985 ● Agenda and Howard M. Temin’s review on retrovirus vectors. October 7, 1985 ● Minutes of August 8, 1986 meeting ● Minutes of January 27, 1986 meeting

Folder 3 - Phone messages, mailing lists, correspondence ● Pile of phone messages left for CD and several short letters thanking him for Paper. ● Stack of mailing list address forms: Zsolt Harsanyi, Ruth Macklin, James Snider, Jonathan Beckwith, ● Phone message form from Wissow ● Letter from James Snider to CD- April 22, 1984- About outline ● Letter from Yale H. Bohn to CD- April 15, 1984. review of outline for Paper ● More mailing list address forms- Bernard Davies, Philip Leder, LeRoy Hood, Albert Rosenfeld, Paul Berg, Frank Ruddle ● List of potential panelists ● Mailing list address forms- Mark Skolnick, David Martin, Theodore Friedman, ● Business card of Ole Johan Sandvand of The Norwegian Research Council for Science and the Humanities attached to Letter from Mark S. Beaubien to Dr. Raub, Dr. Crout, Dr. Engstrom, Mr. Habel, Ms. Porter, Ms. Dalessio, Mrs. Koffler and Ms. Madine. Re: visitic of Ole Johan Sandvand Feb 27-March 1 1984 Cook-Deegan Box 22/28

● Letter from Bertil Wennergren to CD. May 10, 1984- Review of outline for Paper ● More mailing list forms- William L. Nyhan, Yale Bohn, Robert R. Massie IV, Kenneth J. Ryan, Lawrence Wissow, Bertil Wennergren, Ole Johan Sandvand, W. French Anderson, Henry Miller, Bernard Talbot, Mortimer Lipsett, Rachel Levinson, Elizabeth Milewsky, William Gartland, Charles R. McCarthy, Barbara Filmer, Nanette Newell, James E. Bowman, Ola Huntley, J. Robert Nelson, LeRoy Walters, Carol Struckmeyer, C. Thomas Caskey, Clifford Grobstein, Elena Nightingale, Alex Caprou ● Computer pages with addresses ● Copy of contracts- LeRoy Walters, Carol Struckmeyer, J. Robert Nelson, Albert Rosenfeld, Theodore Friedman, Nanette Newell, James E. Bowman, C. Thomas Caskey, Ola Huntley, Lawrence Wissow, Eleanor Pitts, Stephen K. Eckman, Seymour Siegel, Horace Judson, - All from Aug/Sept. 1984 ● Letter from Ola Huntley to CD- September 12, 1984- Thanking him for inviting her to participate in OTA workshop ● CV of Ola Huntley ● Vita brevis of Horace Freeland Judson ● Letter from Albert Gore, Jr. to John H. Gibbons. May 23, 1984. Request that OTA prepare a technical memo on the applications of human genetic engineering techniques. ● Memo from John H. Gibbons to Technology Assessment Board. No date. About Paper. ● Letter from CD to Walter Gilbert- 15 July 1985. About sending him Paper. ● Card announcing appointment of the first Norman Topping Professor of Law, Medicine and Public Policy to Alexander Morgan Capron ● Business card from Rihito Kisamura of Kennedy Institute of Bioethics.

Folder 4 - Articles ● Article- “Targeting in mammalian cells” by Tom Maniatis. Nature Vol. 317 19 September 1985 ● Article-“Beating nature’s odds” by W. French Anderson. November Science 85 ● Article- “Prospects for human gene therapy” by W. French Anderson. Reprint series 26 October 1984 Vol 226 ● Article- “Gene therapy: research in public” 1 February 1985 Science Vol 227 ● Article- “Gene therapy: research in public” 1 February 1985 Science Vol 227 ● Article-“Appeals to court rules “wrongful life” suit possible” AP. 11/20.1984 ● Article-“NIH/FDA dispute likely to delay research” by Tim Beardsley. Nature Vol. 316 15 August 1985 ● Article-“Adenosine deaminase deficiency and severe combined immunodeficiencies” by Rodney E. Kellems, Cho-Yau Yeung and Diane E. Ingolia. Date, source illegible ● Article-“The genetic diseases” by Janet Parker Beck. Daly City Record. February 22, 1986 ● Letter from W. French Anderson to CD. June 5, 1986. about draft of manuscript written for possible submission to NEJM Cook-Deegan Box 22/28

● Memo from CD to Bio Apps Staff. 28 July 1985. Re: press response to Human Gene Therapy ● Article- “Gene therapy: research in public” 1 February 1985 Science Vol 227 ● Article-“Immune response restored by gene therapy in mice” by Michael Steinmetz. Nature Vol. 316 4 July 1985 ● Report-“Human gene therapy: where to draw the line” by W. French Anderson. ● SIPI Scope Vol 14, No. 2 Spring 1986 ● Article-“Somatic gene therapy: current status and future prospects” by David A. Williams and Stuart H. Orkin. The American Society for Clinical Investigations Inc. Volume 77, April 1986 ● Handwritten notes ● Brochure-Human Somatic Cell Gene Therapy: Prospects for Treating Inherited Diseases. Annual Meeting October 15, 1986. Institute of Medicine, National Academy of Sciences ● Memo from Barbara Filner to Participants, IOM/NAS meeting and workshop on human somatic cell gene therapy. September 12, 1986. Attached are workshop materials. ● List of panels and speakers for meeting October 16, 1986 ● List of attendees ● “Public Policy Issues Concerning Gene Therapy” by LeRoy Walters. ● Letter from Bob Williamson to CD- 13 October 1986. Thanking him for copies of Gene Therapy Report ● The discussion of public policy issues concerning gene therapy: an international chronology by LeRoy Walters ● Article-“Genetic breakthroughs” by Roger Thompson. Editorial Research Reports Jan. 10. Vol. 1, No. 1 ● Article-“Gene therapy: the ethical puzzle” by Jonathan B. Tucker. Jan-April 1985. GeneWatch ● Article-“Manipulation just off target” by R. Michael Liskay. Nature Vol. 324 6 November 1986. ● Article-“Stumbling blocks pave path to clinical trials for gene therapy” by Beverly Merz. JAMA April 11, 1986. Vol. 255, No. 14 ● Article-“Implications for medical practice and human biology” by D.J. Weatherall. The Lancet December 22/29 1984 ● Article-“Making mutant mice by gene transfer” by Jean L. Marx. Science Vol. 228, 28 June 1985 ● The Blue Sheet October 22, 1986 ● Article-“Gene therapy guidelines revised” by Barbara J. Culliton. 3 May 1985 Science Vol 228 ● Article-“Gene analysis and its role in predicting susceptibility to disease” by Steve Humphries and Nazzarena Barni. BioEssays Vol. 3, No. 3. ● Article-“Marrow transplant for thalassaemia” The Lancet August 24, 1985 ● Article-“Ethics debate heats up as gene therapy moves towards clinical trials” No author. Medical World News November 12, 1984 ● Article- “The recombinant-DNA debate” by Clifford Grobstein. Scientific American July 1977 Volume 237. No. 1. Cook-Deegan Box 22/28

● Article-“Life from the labs: who will control the new technology?” by Judith Randal. The Progressive March 1977 ● Article-“Germ line gene therapy a misnomer (letter)” by Jacques Beckman. No date, source ● Article-“NIH panel proposes guidelines for human gene therapy research” No author. Medical World News December 10, 1984 ● Article-“A brave new world for biotech lawyers” by Francis J. Flaherty. October 8, 1984 ● Article-“Guide to planning human gene therapy” by J.A. Miller. No source, February 2, 1985 ● Article-“First trimester prenatal diagnosis and detection of carriers of haemophila A using the linked DNA probe DX13” by R.M. Winter, K. Harper, E. Goldman, R.S. Mibashan, R.C. Warren, C.H. Rodeck, R.J.A. Penketh, R.H.T. Ward, R.M. Hardisty and M.E. Pembrey. British Medical Journal Volume 291 21 September 1985 ● Article- “Factor VIII gene specific probe for prenatal diagnosis of haemophila” by Nanni Din, Marianne Schwartz, Torben Kruse, Soren Rus Vestergaard, Peter Ahrens, Daniel Caput, Karin Hartog and Margarita Quiroga. The Lancet June 22, 1985 ● Article-“Inborn alcoholism” No author. The Lancet June 22, 1985 ● Article-“Prenatal diagnosis of haemophilia A by Factor VIII gene analysis” by Stylianos E. Antonarakis, Karen L. Copeland, Robert J. Carpenter, Jr. Leon W. Hoyer, John J. Toole, Carl A. Carta, C. Thomas Caskey and Haig H. Kazazian, Jr. The Lancet 22 June 1985 ● Article-“Ethical issues in and beyond prospective clinical trials of human gene therapy” by John C. Fletcher. Journal of Medicine and Philosophy 10, 1985 ● Article-“Human gene therapy: scientific and ethical consideration” by W. French Anderson

Cook-Deegan Box 23/28

Folder Human Gene Therapy in the press #1

● “Designer Genes: the promise of Genetic Engineering”, Current Health 2 (May 1985). ● “Genetic therapy no ethical problem if non-inheritable”, Washington Times (December 18, 1984). ● “Genetics guidelines”, Register (March 12, 1985). ● “Proposed genetic therapy called possible in a year”, Toledo Blade (December 17, 1984). ● “Therapy proposed for defect in genes”, Fort Lauderdale News (December 17, 1984). ● “Gene therapy appears ethical”, Dayton Daily News (December 17, 1984). ● “Gene therapy may evade ethical issues”, Worcester Telegram (December 18, 1984). ● “Single cell gene therapy may be available in 10-12 years”, Pediatric News (March 1985). ● “Taking care on genetic research” Warren Independent (March 26, 1985). ● “Taking care on genetic research” Hubbard News (March 27, 1985). ● “Taking care on genetics”, Peekskill Star (March 6, 1985). ● “Taking care on genetic research”, Cortland Independent (March 27, 1985). ● “Taking care on genetic research” Niles Liberty News (March 26, 1985). ● “Taking care on genetic research” Austintown Leader (March 27, 1985). ● “Taking care on genetic research” Poland Leader (March 27, 1985). ● “Taking care on genetic research” Howland Independent (March 27, 1985). ● “Taking care on genetic research” Girard News (March 27, 1985). ● “Ten years of DNA: Safety intact”, US Medicine (March 1, 1985). ● “Promise and peril in the genes”, Milwaukee Journal (December 30, 1984). ● “Researchers ready to try gene therapy”, Washington Post (December 19, 1984). ● “Agency reports genetic therapy is near”, New York Times (December 18, 1984). ● “Engineering of genetic traits eyed”, Lubbock Avalanche Journal (December 18, 1984). ● “Genetic therapy offers ray of hope”, San Diego Union (January 1, 1985). ● “Genetic therapy gets OK”, Cincinnati Post (December 19, 1984). ● “Report gives genetic therapy qualified yes”, South Bend Tribune (December 17, 1984). ● “Panel says genetic therapy may be used on people soon”, State Times (December 17, 1984). ● “Gene research rules”, San Antonio Express News (December 17, 1984). ● “Federal regulation outlined for human genetics research”, American Statesman (December 17, 1984). ● “Study backs genetic work to fight disease”, Dallas Morning News (December 18, 1984). ● “Lawmakers OK limited genetic therapy”, Tacoma News Tribune (December 18, 1984). ● “Gene work may ethical, study says”, Detroit Free Press (December 18, 1984).

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● “Ethical concerns in initial genetic efforts downplayed”, Tulsa Daily World (December 18, 1984). ● “Gene study addresses ethics”, St. Petersburg Times (December 18, 1984). ● “Study clears the way for treating genetic disorders”, Atlanta Journal (December 17, 1984). ● “Report backs debate on genetic research”, St Paul Pioneer Press (December 18, 1984). ● “Researchers ready to try therapy for gene defects”, San Antonio Express News (December 30 1984). ● “Gene therapy on humans may be next”, Worcester Evening Gazette (December 17, 1984). ● “Study gives guide for gene research”, Bloomington Pantagraph (December 17, 1984). ● “Gene therapy OK’d”, Lynchburg News, (December 18, 1984). ● “More genetic treatment for diseases”, Kingsport Times-News (December 18, 1984). ● “Study suggests gene therapy for some diseases”, Newport News (December 17, 1984). ● “Gene therapy holds hope for patients with some diseases”, Greensboro News & Record (December 20, 1984). ● “Study: altering genes may not be ethical problem”,” Greensboro News & Record (December 18, 1984). ● “Study says gene therapy may be tried soon”, Kansas City Star (December 17, 1984). ● “Panel reports genetic theory ‘acceptable’”, Lincoln Journal (December 17, 1984). ● “Panel backs use of genetic therapy”, Milwaukee Journal (December 17, 1984). ● “MDs likely to try genetic therapy on human defects by next year”, Birmingham News (December 17, 1984). ● “Gene therapy backed: a cure for disease, not species”, Evening Bulletin (December 17, 1984). ● “New ethical issues unlikely, study says”, Richmond Times-Dispatch (December 18, 1984). ● “Genetic therapy issues clarified”, St Paul Dispatch (December 17, 1984). ● “Make more perfect humans?”, Desert News (December 18, 1984). ● “Study proposes controls for application gene research”, Hartford Courant (December 17, 1984). ● “Advent of genetic therapy near, says scientists”, Press-Enterprise (December 18, 1984). ● “Guidelines outlined for genetic research”, San Francisco Chronicle (December 17, 1984). ● “Tinkering with human genes possible next year, panel says”, Albuquerque Tribune (December 17, 1984). ● “Genetic therapy”, Shreveport Journal (December 17, 1984). ● “Guidelines for gene manipulation offered”, Reno Gazette Journal (December 17, 1984).

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● “With good supervision, time is here for genetic therapy”, Fond due Lac Reporter (January 2, 1985). ● “Genetic therapy for inherited ills seems possible within a year”, Des Moines Register (December 18, 1984). ● “Guidelines offered scientists tampering with human genes”, Lewiston Morning Tribune (December 17, 1984). ● “Genetic dispute may ease”, San Diego Times(December 18, 1984). ● “U.S. gives genetic research guidelines”, LA Times (December 17, 1984). ● “Report Oks some gene therapies”, LA Herald Examiner (December 18, 1984). ● “Gene therapy approval foreseen”, Denver Post (December 18, 1984). ● “Gene therapy for some humans called likely as soon as next year”, Omaha World-Herald (December 17, 1984). ● Kathryn Simmons, “Clinical stage draws nearer in ongoing studies of gene therapy”, JAMA Medical News, 253(1): 13-15 (January 4, 1985). ● “Researchers ready to try gene therapy”, Charlotte Observer (January 3, 1984). ● “Science ready to try human gene therapy”, Albuquerque Journal (January 3, 1985). ● “Researchers test new method to repair immune system” Austin American Statesman (January 1, 1985). ● “Gene therapy may provide new choices: first human trials expected to start within one year, Portland Oregonian (January 3, 1985). ● “Gene therapy? Not if, but when”, The Plain Dealer (December 25, 1984). ● Warren Leary, “Gene therapy may be tried on humans soon”, Herald Statesman (December 17, 1984). ● Warren Leary, “Genetic therapy may be introduced in humans next year, group says”, Louisville Times (December 17, 1984). ● “Genetic engineering to cure hereditary diseases is planned”, Ft. Lauderdale News and Sun Sentinel (December 25, 1984). ● “Caution urged on genetics”, Springfield Union (December 18, 1984). ● Warren Leary, “Panel: Genetic therapy likely”, Bridgeport Post (December 17, 1984). ● “Study: non-inheritable gene therapy supported”, Columbus Ledger (December 17, 1984). ● “Genetic therapy set”, Fargo Forum (January 3, 1985). ● “First step urged in treating disease genetically”, Arizona Republic (December 18, 1984). ● “Genetic treatment nearer”, Pittsburgh Press (December 18, 1984). ● “Guidelines given for manipulation of human genes”, Norfolk Ledger-Star (December 17, 1984). ● “No ethics problem seen in genes treatment”, Boston Globe (December 18, 1984). ● “Genetic therapy possible in 1985”, Providence Journal (December 18, 1984). ● “Report on genetic therapy downplays ethical issues”, Hartford Courant (December 18, 1984). ● “Gene therapy for hereditary diseases may soon begin”, Charlotte Observer (December 18, 1984).

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● “Study outlines procedures for research with human genes”, Greensboro News & Record (December 17, 1984). ● “Hemoglobin disorders are potential candidates for gene therapy, but prospects for clinicals are beyond ‘foreseeable future’, according to OTA backgrounder”, FDC Reports Pink Sheet (December 25, 1984). ● “Genetic therapy may raise ethical questions, OTA says”, Modern Healthcare (January 4, 1985). ● “Gene therapy likely won’t raise ruckus”, Columbus Sunday Dispatch (December 23, 1984). ● “Group studies new therapy”, Williamsport Grit (December 30, 1984). ● “Gene therapy- possible soon—raises new ethical questions”, Christian Science Monitor (February 7, 1985). ● Jonathan Tucker, “Drawing the line for gene therapy”, NewsDay (February 25, 1985). ● “Genetic research”, Lynn Item (March 9, 1985). ● “Taking care on genetics”, Key West Citizen (February 27, 1985). ● “Taking care with genetics”, Hobbs News-Sun (February 27, 1985). ● “Genetic guidelines”, Burley South Idaho Press (February 28, 1985). ● “Genetics study enhances life”, St. George Spectrum (February 26, 1985). ● “Taking care on genetic research”, Niles Times (March 1, 1985). ● “Taking care on genetics”, Nashua Telegraph (March 2, 1985). ● “Gene guidelines”, Corsicana Sun (March 1, 1985). ● “Vital guidelines”, San Gabriel Valley Tribune (February 26, 1985). ● “Regulating genetic engineering is no easy task”, Nashville Banner (February 8, 1985). ● “Genetics study enhances life”, Cedar City Spectrum (February 26, 1985). ● “Taking care on genetics”, Henry Co. Local (March 7, 1985). ● “Genetic therapy seen as disease treatment”, Consumers Union (February 15, 1985). ● James Kilpatrick, “Congress to study genetic engineering issues”, Springfield Union (February 7, 1985). ● James Kilpatrick, “Genetic engineering—promising science, or pesky little bug?”, Tampa Tribune (February 7, 1985). ● James Kilpatrick, “The genetic engineering Pandora is coming out of its box”, Florida Times-Union (February 7, 1985). ● James Kilpatrick, “Kudzu and other godsends”, Baltimore Sun (February 7, 1985). ● “Supermice and oil bugs”, Fresno Bee (February 7, 1985). ● “Supermice”, Bridgeport Telegram (February 12, 1985). ● “Taking care on genetics”, Omaha World-Herald (February 15, 1985). ● “No major ethical problems foreseen in genetic therapy”, Houston Post (January 26, 1985). ● “Genetic research guidelines paper”, Ardmoreite (March 3, 1985). ● Mary Oldham, “Genetic regulations heighten arguments”, Daily Texan (January 22, 1985).

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● “Scientist ready to try gene therapy on humans”, Newport Times-Herald (January 28, 1985). ● Edward Dolnick, “Transplants of genes on horizon”, Miami Herald (January 31, 1985). ● “Genetic cures”, Baltimore Evening Sun (January 4, 1985). ● Edward Dolnick, “Human gene transplants expected within a year”, Boston Globe (January 28, 1985). ● “Single-cell gene therapy may be ready in 10-12 years”, OBGYN News (March 1, 1985). ● “Single-cell gene therapy may be available in the next 10-12 years”, Family Practice News (March 1, 1985). ● Newsletter: Genetics Digest (February, 1985). ● “Gene therapy no ethical problem if non-inheritable”, Washington Times (December 18, 1984). ● “Use of genetic therapy approved in limited cases”, Chicago Tribune (December 18, 1984). ● “Research ethics”, Brawley News (March 1, 1985). ● “Human gene therapy poses no new risks—OTA report”, FASEB Public Affairs Newsletter (January 1985). ● James Kilpatrick “Genetic genie must be handled gingerly”, Newark Star-Ledger (February 8, 1985). ● Thomas Murray, “Human gene therapy”, Genetic Engineering News (March 1985). ● Harold Schmeck Jr., “Agency reports genetic therapy is near”, NY Times (December 18, 1984). ● TV clips: John Whitson (anchor), Dallas KTVT-TV, Channel 11 (December 17, 1984). ● Radio clips: Lori Walkenschmidt reporting, “All things considered”, NPR (December 17, 1984). ● Radio clips: Paul Harvey reporting, ABC Information, News & Comment (December 17, 1984). ● TV clips: Teddy Bart (anchor), The Scene at Ten News, Nashville WSMV-TV, Channel 4 (December 17, 1984). ● TV clips: Carol Williams (co-anchor), NewsCenter Eight, Lancaster WGAL-TV, Channel 8 (December 17, 1984). ● TV clips: Bob Gleason (anchor), Morning Report, Seattle KSTW-TV, Channel 11 (December 17, 1984). ● Radio clips: Bob Haupt reporting, ABC Direction (December 17, 1984). ● Radio clips: Irwin Brown (anchor), News, NYC WINS-AM-1010 (December 17, 1984). ● Radio clips: Nora Wolfe reporting, News, NYC WINS-AM-1010 (December 17, 1984). ● Radio clips: Bob Edwards (host), Morning Edition, NPR (December 18, 1984). ● Newsletter: “Genetic Engineering Letter”, vol. 4(23), December 10, 1984. ● Newsletter: “The Blue Sheet”, vol. 27(51-52), December 19, 1984.

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● Culliton, Barbara J. “Congress reports on gene therapy”, Science vol. 226 (December 21, 1984). ● Newsletter: “Science Trends”, vol. 52(15), December 17, 1984. ● Douglas McCormick, “An honest beginning”, Bio/Technology p. 99 (February 1985). ● Lisa Krieger, “OTA: No new laws are needed to regulate certain gene therapies”, American Medical News (December 28, 1984). ● Research paper: Nova: Gene Therapy Revision 1 (November 15, 1984). ● Laura Tangley, “Gearing up for gene therapy”, BioScience 35(1): 8-10 (January 1985). ● Kathryn Simmons, “Clinical stage draws nearer in ongoing studies of gene therapy”, Medical News 253(1): 13-15 (January 4, 1985). ● Kim McDonald, “Research on gene therapy is justified but should be limited, report says” Chronicle of Higher Education (December 5, 1984). ● Harold Schmeck Jr., “Agency reports genetic therapy is near”, NY Times (December 18, 1984). ● Larry Thompson, “Gene-repairing tests near”, Washington Post (December 18, 1984). ● Larry Thompson, “Researchers ready to try (December 18, 1984).”, Washington Post (December 19, 1984). ● “Gene therapy: one step closer”, Newsweek p. 70 (December 31, 1984). ● James Kilpatrick, “Genetics genie is forever out of the bottle”, Rocky Mountain News (February 14, 1985). ● Staff Memo: from Cook-Deegan (April 15, 1985) to Ellen Mika. Report on press clippings from OTA gene therapy paper.

Folder Human gene therapy in the press #2

● Staff memo: from BCD (July 28, 1985) to Bio Apps Staff (OTA). Report on press response to human gene therapy. ● Letter from Ann Mesmer (Hastings Center) to OTA (June 24, 1985). Attached: “In the Literature”, Hastings Center Report 44-46 (June 1985). ● Requests for copies of the OTA BPA-32 “Human Gene Therapy, Background Paper” (1984): ○ UCSF (July 29, 1985) ○ Holy Name Hospital (August 6, 1985) ○ Miami Heart Institute (August 12, 1985) ○ SUNY Medical Center (August 1, 1985) ○ Plymouth High School (August 23, 1985) ○ Cabot Library, Harvard (August 2, 1985)

● Horace Freeland Judson, “Who shall play god?” Science Digest Monthly p. 52 (May 1985). ● Memo from BCD (February 11, 1985) to Ellen Mika. Concerning press response to OTA background paper. Attached: sampling of previously cited articles. ● Note from Marge to BCD (September 26, 1985). Impressed with TV appearance.

Cook-Deegan Box 23/28

● Letter from James Austin (University of Colorado) to BCD (September 30, 1985). Impressed with TV appearance. ● Harry Nelson, “Gene therapy for some diseases close at hand”, LA Times (May 11, 1985). ● Douglas McCormick, “Human gene therapy: the first round”, Bio/Technology 3(8) (August 1985). ● Guidelines Ok’d for human test of gene therapy” Schenectady Gazette (September 25, 1985). ● Warren Leary, “US approves limited gene therapy”, Boston Globe (September 25, 1985). ● Horace Freeland Judson, “Why Genetic Engineering”, Washington Current (August 1985). ● “Hereditary diseases targeted”, Bakersfield Californian (September 25, 1985). ● Warren Leary, “Advisory group approves genetic testing guidelines”, Vallejo Times-Herald (September 25, 1985). ● “Federal group sees no problem in single-cell gene therapy”, Internal Medicine News (April 1, 1985). ● Staff memo from BCD (November 18, 1985) to Teresa Meyers et al. Request for material for Bioethics Reporter special issue. Attached: BCD’s proposed material (commentary on OTA background paper). ● Letter from W. French Anderson (DoHHS) to BCD (November 8, 1985). Attached: outline of proposed special gene therapy issue of Bioethics Reporter. ● Letter from W. French Anderson (DoHHS) to BCD. Request for microfiche material for special gene therapy issue of BR. ● Report: “Human gene therapy”, Stanford University (February 13, 1986). ● Barbara Culliton, “NIH asked to tighten gene therapy rules”, Science vol 233 1378-1379 (September 26, 1986). ● Sandy Rovner, “Gaucher’s disease: a target for the geneticists” Washington Post (October 21, 1986). ● Valerie Finhom, “Gene therapy: promise amid peril”, Hartford Courant (November 23, 1986). ● SK Levin, “Genetic research: critics fear control of nature’s blueprints”, Colorado Daily (December 14-15, 1984). ● Douglas McCormick, “Human gene therapy: the first round”, Bio/Technology 3(8) (August 1985). ● Note to BCD (September 26, 1985). Impressed with TV appearance.

Folder Informe anval de la comision interamericana de derechos humanos 1989- 1990 ● Report: “Informe annual de la comision interamericana de derechos humanos 1989-1990”, Organización de los estados americanos. CIDH.

Cook-Deegan Box 23/28

Folder human gene therapy in the press #3

● Laura Tangley, “Gearing up for gene therapy”, BioScience vol 35(1): 8-10 (January 1985). ● Newsletter: “Science Trends”, vol. 52(15), December 17, 1984 ● Madeline Chinnici, “The promise of gene therapy”, Science Digest p. 48-51 (May 1985). ● Newsweek (December 31, 1984).

Subfolder: Inside Mail, Bob Cook-Deegan FYI ● Al Rossiter, Jr., “Gene therapy: a revolution in medicine”, New York Daily (October 29, 1985). ● Max Gates, “Gene therapy: still in its infancy, genetic engineering offers hope for a host of inherited ills”, Ann Arbor News (November 14, 1985). ● LeRoy, Walters, “Biomedical ethics”, JAMA 254(16): 2346 (October 25, 1985). ● “Diseases with genetic links identified”, Southown Economist (November 3, 1985). ● Nancy Ross, “Genetic repairs may ease some disorders”, Detroit Free Press (November 19, 1985). ● Al Rossiter, Jr., “Gene therapy: a revolution in medicine”, Citizen’s Voice (December 2, 1985). ● “Genetic therapy may be used against some hereditary disease”, Jersey Journal (November 29, 1985). ● Al Rossiter, Jr., “Gene therapy: a revolution in medicine”, Chicago Defender (November 6, 1985). ● Al Rossiter, Jr., “Gene therapy: a new revolution in medicine”, Southtown Economist (November 10, 1985). ● “Genetic disease control possible”, Beavercreek Daily News (November 19, 1985). ● “Five rare diseases are main targets of gene therapy”, Ann Arbor News (November 14, 1985). ● “Diseases with genetic link”, Mesa Tribune (November 13, 1985). ● “Diseases with genetic links identified”, Southtown Economist (November 3, 1985). ● Gerald Campbell “Gene therapy… the future of medicine”, Our Town (April 21, 1985). ● “Diseases with a genetic link”, “A” Wire, New York Daily (October 29, 1985). ● TV clips: Lois Hart (co-host), “Take Two”, CNN (October 9, 1985). ● “Rare diseases are candidates: gene transplants considered”, Kenosha News (November 5, 1985).

Cook-Deegan Box 24/28

Folder Map analogies

● Letter from T.M. Albert (Dept of Interior) to Cook-Deegan (August 2, 1988). Enclosed: Bibliography: NMD Research reference collection, Geographic Information Systems (June 1988). ● Report: Stephen Guptill, David Nystrom, “Geographic Information systems: An Important Tool for Spatial Analysis”, DoI, US Geological Survey. ● Report: “Cooperative GIS Activities at the US Geological Survey”, DoI, US Geological Survey. ● Book excerpt: Wallace Stegner, Beyond the Hundredth Meridian: John Wesley Powell and the Second Opening of the West. University of Nebraska Press, Lincoln: 1953 (275-335). ● Report: David Nystrom, “Cooperative Geographic Information System Activities within the US Geological Survey”.

Folder U. Penn Mtg on History of Sci as it occurs ● Program: “Writing the History of Science as it Happens”, Conference, Beckman Center (September 12-13, 1991). ● List of Participants: Writing the History of Science as it Happens Conference, Beckman Center (September 12-13, 1991). ● Presentation outline: Bruce Lewenstein, “Cornell Cold Fusion Archive: Issues for Contemporary History” (September 12-13, 1991). ● Letter from Susan Lindee (Beckman Center) to Cook-Deegan (July 25, 1991). Invitation to History of Science conference. ● Statement: Prebert P. Crease (SUNY Stony Brook). ● Statement: Stephen Hilgartner (Columbia). ● Statement: Susan Lindee, “History as it happens”. ● Statement: Robin E. Rider, “Sources for writing history of science as it happens”. ● Statement: Charles Schrader (Army Ret.), “The army historian and history as it happens”. ● Statement: Robert W. Smith, “On the Writing of Contemporary History”. ● Letter from Bob Teitelman (Institutional Investor) to Susan Lindee (August 15, 1991). Concerning Beckman Center conference. ● Statement: Stacia E. Zabusky (Cornell), “Writing history of science while it happens”.

Folder Knowledge has no borders/ The technological imperative and international Hugo organizes in Mont roux, Valencia in October/ Futility of scientific nationalism

● Article: George F. Will, “Science is making the news”, Washington Post (April 23, 1989). ● Article: David Dickson, “Europe seeks strategy for biology”, Science vol. 240, 710-712 (May 6, 1988). ● Article: Jean Marx, “Putting the Human Genome on the map”, Science 150-151 (July 12, 1985). Cook-Deegan Box 24/28

● Article: Jeffrey Fox, “Contemplating the human genome”, BioScience vol 37(7), 457-460 (July-August 1987). ● Article: A.A. Baev, “The human genome project”. ● Article: David Swinbanks, “Japan keeps its options open on genome sequencing project”, Nature vol. 334, 5 (July 7, 1988). ● Article: “Human frontier”, Science vol. 241, 741. ● Article: David Dickson, “OECD to set rules for international science”, Science pg. 743 (November 6, 1987). ● Article: “The pros and cons of freedom of access to human genome data”, Nature vol. 333, 692 (June 23, 1988). ● Article: Leslie Roberts, “Human genome goes international”, Science pg. 165 (July 8, 1988). ● Article: Marjorie Sun, “A biotech enterprise Soviet style”, Science vol. 241, 1154- 5 (September 2, 1988). ● Article: Roger Lewin, “Genome planners fear avalanche of red tape”, Science pg. 1543 (June 30, 1989). ● Article: David Dickson, “German biotech firms flee regulatory climate”, Science vol. 244, 1251-1252 (June 16, 1989). ● Article: Watson and Cook-Deegan, “The human genome project and international health”, JAMA vol. 263(24), 3322-3324 (June 27, 1990). ● Article: Santiago Grisolia, “Mapping the human genome”, Hastings Center Report pg 18-31 (July-August 1989). ● Memo from Cook-Deegan to John Beatty (May 25, 1991). Receipts attached.

Folder companies in databases

● Report: “EMBASE: The Excerpta Medica Database”, Elsevier Science Publishers. ● Report: “CARB: Center for Advanced Research in Biotechnology”, CARB. ● Report: “DNA diagnostic services”, Diagnostic Services Division, Collaborative Research Inc. ● Report: “IntelliGenetics: Software solutions for biotechnology”, IntelliGenetics Inc. ● Report: “PC Gene: Microsoftware for protein chemists and molecular biologists”, IntelliGenetics Inc.

Folder R. Cook-Deegan (USA)

● Participant list: Symposium on Human Genome Research: Strategies and Priorities, Unesco (January 29-31, 1990). ● Agenda: Symposium on Human Genome Research: Strategies and Priorities, Unesco (January 29-31, 1990). ● Compilation of statements/presentation abstracts given at the Symposium on Human Genome Research: Strategies and Priorities, Unesco (January 29-31, 1990). Cook-Deegan Box 24/28

● Report: R. Tsanev, “What in the genome is more than sequences”, Bulgarian Academy of Sciences.

Folder Frontiers in Reproductive Endocrinology a Symposium

● Facsimile from Beverly Wellman to Cook-Deegan (April 9, 1991). Speaker request form, “Frontiers in Reproductive Endocrinology” Symposium. ● Memo from Cook-Deegan (April 16, 1991) to Beverly Wellman. Attached: Cook- Deegan’s CV. ● Hand-written notes (1 page).

Folder Serono Symposia USA

● Program: “Frontiers in Reproductive Endocrinology”, Symposium (April 22-26, 1991). ● Brochure: “Serono Symposia USA”. ● Letter from R. Jeffrey Chang (UC Davis) to Cook-Deegan (April 30, 1991). Gratitude for participation in symposium. ● Letter from Beverly Wellman (Serono Symposia) to Cook-Deegan (May 24, 1991). Gratitude for participation in symposium. ● Schedule: “Frontiers in Reproductive Endocrinology”, Symposium (April 22-26, 1991). ● Letter from Beverly Wellman to Cook-Deegan (March 20, 1991). Information concerning “Frontiers in Reproductive Endocrinology”, Symposium (April 22-26, 1991).

Folder DOE Newsletter

● Newsletter: Human Genome News, National Center for Human Genome Research, vol. 2(1), May 1990. ● Newsletter: Human Genome News, National Center for Human Genome Research, vol. 2(4), November 1990. ● Newsletter: Human Genome News, National Center for Human Genome Research, vol. 1(2), Summer 1989. ● Newsletter: Human Genome News, National Center for Human Genome Research, vol. 1(3), Winter 1990. ● Newsletter: Human Genome News, National Center for Human Genome Research, vol. 2(2), July 1990. ● Newsletter: Human Genome News, National Center for Human Genome Research, vol. 2(3), September 1990. ● Newsletter: Human Genome News, National Center for Human Genome Research, vol. 2(5), January 1991. ● Newsletter: Human Genome News, National Center for Human Genome Research, vol. 2(6), March 1991. ● Newsletter: Human Genome News, National Center for Human Genome Research, vol. 3(1), May 1991. Cook-Deegan Box 24/28

● Newsletter: Human Genome News, National Center for Human Genome Research, vol. 3(2), July 1991.

Folder Status Memos

● Letter from Cook-Deegan (March 14, 1990) to Jim Watson. BCD’s modest proposal to approach blue-chip corporations about genetics research. ● Letter from Linda Engel (OSR) to Deputy Director of the NCHGR (September 12, 1990). Recognition of assistance provided by NCHGR staff. ● Letter from Cook-Deegan (April 23, 1990) to James Watson. List of upcoming commitments. ● Letter from A.S. Baer, R. Hall, G.S. Omenn, G.J. Thomson, A.C. Wilson to the ASHG, HUGO, the Human Genome Project et al (February 14, 1990). Concerning the creation of a DNA bank. ● Letter from Cook-Deegan (March 15, 1990) to Malcolm Ferguson-Smith. Request for copy of the WHO report. ● Letter from Cook-Deegan (March 2, 1990) to Elke Jordan. List of upcoming commitments. ● Letter from Cook-Deegan to Kumar (March 2, 1990). Calling out of work. ● Letter from Cook-Deegan (March 2, 1990) to Elke Jordan. List of upcoming commitments. ● Letter from Cook-Deegan (February 27, 1990) to James Watson. List of upcoming commitments. ● Letter from Cook-Deegan (February 27, 1990) to Elke Jordan. Upcoming ELSI meetings. ● Letter from Cook-Deegan (February 26, 1990) to Bernadette Modell. Concerning Valencia conference. ● Letter from Cook-Deegan (February 26, 1990) to Vladimir Zharov (Unesco). Upcoming articles for Unesco publication. ● Letter to Cook-Deegan (February 26, 1990) from Judge C. Byk. Invitation to Valencia meeting. ● Letter from Cook-Deegan (February 27, 1990) to Elke Jordan. Concerning personal commitments. ● Letter from Cook-Deegan (January 26, 1990) to Jim Watson. Upcoming commitments. ● Letter from Cook-Deegan to Jim Watson (January 23, 1990). The Bodmer letter to Unesco is a mistake. ● Letter from Cook-Deegan (December 20, 1989) to Jim Watson. News this week. ● Letter from Cook-Deegan (December 20, 1989) to Rakesh Anand. Concerning ICI YAC library. ● Letter from Cook-Deegan to Mark Pearson (December 20, 1989). Informatics Task Force Report. ● Letter from Cook-Deegan to Jim Watson (August 14, 1990). Disposition of final manuscripts. ● Letter from Cook-Deegan (March 22, 1990) to Elke Jordan. Concerning US-Japan Sci/Tech Agreement and genome research. Cook-Deegan Box 24/28

● Letter from Cook-Deegan (March 24, 1990) to Erin. Corrections for foreign spending on genome projects. ● Letter from Cook-Deegan to Jim Watson (May 25, 1990). Banbury retreat. ● Letter from Cook-Deegan (March 16, 1990) to Joanna Strayer. Concerning Mac upgrades. ● Letter from Cook-Deegan (March 23, 1990) to Jim Watson. Followup on House appropriations hearings. ● Letter from Cook-Deegan (May 10, 1990) to Jim Watson. Current activates. ● Memo from Cook-Deegan (June 29, 1990) to Jim Watson. Quote: “June has been one hell of a bad month”. ● Memo from Cook-Deegan (June 26, 1990) to Andrea. ● Letter from Cook-Deegan (June 25, 1990) to Jim Watson. Concerning House appropriations budget and Watson’s resignation. ● Memo from Cook-Deegan to Elke Jordan (March 23, 1990). Answers to questions posed by House appropriations committee. ● Letter from Cook-Deegan to Nancy Wexler (December 20, 1990). Update on Ethical Social and Legal Issues (ESLI) working group. ● Letter from Cook-Deegan (March 15, 1990) to Ruth Bulger. Concerning the Beckman Center proposals ● Memo from Cook-Deegan (July 5, 1990) to James Watson. Concerning the ADA act and genetic discrimination. ● Memo from Juengst and Cook-Deegan (July 9, 1990) to Jim Watson. Attached: “Insurance and Genetic Tests” fact sheet.

Folder Watson Memos

● Memo from Elke Jordan (February 22, 1990) to Director of Fogarty International Center. Regarding the Fogarty Scholars Program and USSR research. ● Letter from Cook-Deegan to Jim Watson (November 16, 1989). Concerning Japan, OSTP Meeting, and conversation with George Cahill. ● Letter from Cook-Deegan (October 25, 1989) to Jim Watson. Regarding BCD’s responsibilities at NIH. ● Letter from Cook-Deegan to Jim Watson (April 4, 1990). Article revision. ● Memo from Cook-Deegan to Jim Watson (May 8, 1990). Concerning the Physicians for Human Rights (PHR). ● Letter from Cook-Deegan (November 16, 1989) to James Watson. Regular expert appointment. ● Letter from Cook-Deegan (October 25, 1989) to Elke Jordan. Salary negotiations. ● Letter from Cook-Deegan (May 8, 1991) to Jim Watson. ESF and MRC reports on genome research. ● Memo from Cook-Deegan (February 22, 1991) to Jim Watson. Criticism of Wyngaarden. ● Memo from Cook-Deegan (February 22, 1991). Criticism of Ubell article.

Cook-Deegan Box 24/28

Folder Parade

● Letter from Cook-Deegan (February 26, 1990) to Jim Watson. Attached: draft letters to Parade.

Folder Valencia, October 1988

● Contact information: Joan Lerma I Blasco, President de la Genralitat Valenciana and Santiago Grisolia, Director, University of Kansas. ● Valencia Declaration on the Human Genome Project. ● Article: Leslie Roberts, “Carving up the human genome”, Science vol. 242, 1244- 1247 (December 2, 1988). ● Synopsis: “The Human Genome: ‘Valencia Declaration’”, Workshop on international cooperation for the human genome project. ● Article: Santiago Grisolia, “Mapping the human genome”, Hastings Center Report, 18-19 (July-August 1989). ● Article: David Dickson, “Watson floats a plan to carve up the genome”, Science vol. 244, 521-522 (May 5, 1989). ● Article: Alun Anderson, “US pressures Japan over imbalance in basic research”, Nature vol. 329, 662 (October 22, 1987). ● News Brief: “A Soviet human genome program?” Science, vol. 240, 140. ● Letter from Cook-Deegan (May 2, 1988) to Santiago Grisolia. Creation of new Cold Spring Harbor organization.

Folder 1992 Budget

● Budget report, Life Science (February 5, 1991). ● Budget report, Life Science (February 12, 1991). ● Budget report, Life Science (February 13, 1991).

Folder Op Ed & Lander

● Facsimile from Cook-Deegan (May 10, 1990) to Eric Lander. Concerning op-ed piece for the Post. Draft of op-ed attached.

Folder Valencia ‘90

● Report: Hans Martin Sass (KIE), “A view from Germany”, Workshop on international cooperation for the human genome project, National and religious concerns and inputs, Valencia (November 12-14, 1990). ● Compilation of CVs: II Workshop on international cooperation for the human genome project: Ethics, Valencia (November 12-14, 1990). ● Compilation of resumes: II Workshop on international cooperation for the human genome project: ethics, Valencia (November 12-14, 1990). ● Letter from Benno Muller-Hill (Institut fur Genetik) to James Watson (June 7, 1990). Attached: a position paper from Dahlem workshop. Cook-Deegan Box 24/28

● Letter from Bernadette Modell (Middlesex) to Cook-Deegan (March 6, 1990). Unable to attend Valencia meeting. ● Letter from Benn Muller-Hall (Institut fur Genetik) to Cook-Deegan (February 22, 1990). Able to attend Valencia meeting. ● Letter from DJ Weatherall (Oxford) to Cook-Deegan (March 2, 1990). Unable to attend Valencia meeting. ● Summary points of Valencia meeting (November 12-14, 1990). ● Facsimile from Sergio Arias to Cook-Deegan (December 3, 1990). Attached: transcript of portions of Valencia meeting. ● Agenda: : II Workshop on international cooperation for the human genome project: Ethics, Valencia (November 12-14, 1990). ● Copy of receipts ● Letter from Benno Muller-Hill (Institut fur Genetik) to James Watson (June 7, 1990). Attached: Benno Muller-Hill, “Lessons from eugenics and radical hygiene”. ● Draft: Overview of the Valencia conference, Cook-Deegan.

Folder Material/ Summer/Fall

● Memo from Cook-Deegan (September 4, 1990) to Ted Friedmann (UC San Diego). Concerning Molecular Genetic Medicine MS. ● Letter from Cook-Deegan (August 18, 1990) to Ted Friedmann (UC San Diego). Enclosed: Draft of MS for Molecular Genetic Medicine vol. 1. ● Letter from Cook-Deegan (July 16, 1990) to Ted Friedmann (UC San Diego). ● Facsimile from Ted Friedmann (UC San Diego) to Cook-Deegan (July 12, 1990). Gratitude for copy of IOM paper on the Genome Project. ● Request for chapter from Cook-Deegan for Molecular Genetic Medicine: contribution information material attached

Folder STEP/Science in crossfire

● Letter from Irene Eckstrand (DoHHS) to Cook-Deegan (April 30, 1990). Gratitude for participation in “Science in the Crossfire” workshop. ● Letter from Irene Eckstrand (DoHHS) to Cook-Deegan (April 9, 1990). Rearrangements for “Science in the Crossfire” workshop. ● Map ● Participants list: “Science in the Crossfire” workshop (April 24-25, 1990). ● Letter from Irene Eckstrand (DoHHS) to Cook-Deegan (April 30, 1990). Attached: Schedule for “Science in the Crossfire” workshop (April 24-25, 1990). ● Agenda: “Science in the Crossfire” workshop (April 24-25, 1990). ● Participants list: “Science in the Crossfire” workshop (April 24-25, 1990). Cook-Deegan Box 25/28

Folder Professor R.M. Cook Deegan

● Report: “Итоги Hаучыx Paбoт”, Aқадеmия Hayk CCCP (1988) (Russian). nd ● List of participants: 2 UNESCO Meeting on International Cooperation in the Human Genome (June 26-27, 1989). ● Facsimile from V. Zharov to Cook-Deegan (July 7, 1989). Attached: “Scientists’ Message on the Human Genome Project to the Twenty-Fifth Session of UNESCO’s General Conference”. ● Facsimile from Cook-Deegan to A. Mirzabekov (June 8, 1989). ● Memo from Cook-Deegan to A. Mirzabekov (June 8, 1989). Concerning 6/26/89 UNESCO meeting in Moscow. ● Facsimile from Mirzabekov to Cook-Deegan (May 31, 1989). Invitation to 6/26/89 UNESCO meeting in Moscow. ● Facsimile from V. Zharov to Cook-Deegan (June 2, 1989). Details of 6/26/89 UNESCO meeting in Moscow. ● Itinerary for Kathy and Bob Cook-Deegan trip to Moscow (June 24-July 5, 1989). ● Memo from Cook-Deegan (June 21, 1989) to S. Matsui (UNESCO), concerning visas for Moscow trip. ● Draft unclassified notification from State Department, “US Participation in UNESCO Consultation on the Human Genome”. ● Memo from Cook-Deegan to A. Mirzabekov (June 8, 1989). Concerning 6/26/89 UNESCO meeting in Moscow. ● Memo from Cook-Deegan (May 1, 1989) to Federico Mayer (UNESCO). Acceptation of invitation to 6/26/89 UNESCO Moscow meeting. ● Facsimile from V. Zharov to Cook-Deegan (June 2, 1989). Details of 6/26/89 UNESCO meeting in Moscow. ● Memo from Cook-Deegan to A.A. Bayev (February 16, 1989). Attached: OTA reports. ● Handwritten notes (3 pages). ● Schedule: HUGO and UNESCO Meeting (June 22-28, 1989). ● List of grants for human genome research, Institute of Molecular Biology, USSR Academy of Sciences. ● Workshop on International Cooperation for the Human Genome Project, “Valencia Declaration on the Human Genome Project” (October 24-26, 1988). ● Handwritten notes (1 page). ● Report: “Participation of Developing Countries in the Human Genome Project: The Latin American Example: A Regional Approach”, Presented June-26-27, 1989. ● Facsimile from Walter Bodmer (HUGO) to Federico Mayor (UNESCO), declining Mayor’s request to join UNESCO coordinating committee. ● Airline ticket stub.

Cook-Deegan Box 25/28

Untitled Folder 1

● Revised program: Organizing Committee for the Human Genome Meeting (November 11-14, 1990). ● Letter from James Watson (Cold Spring Harbor) to Santiago Grisolia (Kansas) . Concerning available dates for Monte Picayo Mapping and Sequencing the Genome meeting (September 1, 1989). ● Facsimile from Judith Reagan to Cook-Deegan (January 29, 1990). Contact list enclosed. ● Program: Transcultural Dimensions of Medical Ethics, Fidia Research Foundation Symposium (April 26-27, 1990). ● Facsimile from Santiago Grisolia to Cook-Deegan (January 11, 1990). Invitation to Organizing Committee for the Human Genome Meeting in Valencia. ● Letter from Jack B. McConnell to Cook-Deegan (December 28, 1989). Details of Mapping and Sequencing the Genome Meeting: “New Opportunities/New Dilemmas”, Monte Picayo November 12-14 1990. ● Letter from Ernst Juengst to Jack McConnell (January 8, 1990). Concerning Valenica Organizing Committee for the Human Genome Meeting.

Folder BOCHUM

● Letter from Cook-Deegan to Carmen Kaminsky (October 10, 1989). Expense report for Bochum meeting. Receipts attached. ● Letter from Hans-Martin Sass (KIE) to Cook-Deegan (May 14, 1989). Request for paper submission for Ethische Probleme der Genomanalyse und Gentherapie conference in Bochum. Conference program attached. ● Letter from Hans-Martin Sass (KIE) to Cook-Deegan (June 9, 1989). Request for paper submission for Ethische Probleme der Genomanalyse und Gentherapie conference (German). ● Letter from Hans-Martin Sass (KIE) to Cook-Deegan (January 6, 1989). Details of Ethische Probleme der Genomanalyse und Gentherapie in Bochum conference. Program and attendees list attached. ● Note from Sass to Cook-Deegan concerning hotel arrangements for Bochum conference. ● Memo from Cook-Deegan to Kennedy Institute Tuesday Seminar Participants (August 31, 1989). Paper to be presented at Bochum attached. (Hand written notes on reverse). ● Report: Cook-Deegan, “Some Implications of DNA Mapping and Sequencing Projects” (August 1989), Draft 9/1/89. ● Report: Cook-Deegan, “Some Implications of DNA Mapping and Sequencing Projects”, (August 1989), Draft 11/20/89.

Cook-Deegan Box 25/28

Subfolder Dr. Robert Cook-Deegan, Ruhr-Universität Bochum ○ Contact lists (2) of Bochum conference participants. ○ Handwritten notes (six pages). ○ Program for Bochum conference “Ethische Probleme der Genomanalyse und der Gentherapie” (October 6, 1989).

● Program for Bochum conference “Ethische Probleme der Genomanalyse und der Gentherapie” (October 6, 1989). ● Report: M.F. Niermijer, “Eurogenetics 1989: Prospects for the Future: the EEC Program for Human Genome Analysis”, Bochum conference (October 1989). ● Letter from Hans-Martin to Cook-Deegan (October 15, 1989). Articles attached (in German). ● Report: Brigitte Heerklotz, Zentrum für Medizinsche Ethik, “Europäische Richtlinien und Empfehlungen” (September 1989). ● Report: Wolfgang Holzgreve, Zentrum für Medizinsche Ethik, “Überlgungen zum Problem der Organtranspantationen von Anencephalen Spendern” (October 1989). ● Report: Rihito Kimura, Zentrum für Medizinsche Ethik, “The Japanese Human Genome Analysis Project Background, Policy, and Problems” (September 1989). ● Publication ordering form: “Genomanalyse und Gentherapie” (1990).

Folder Moscow UNESCO

● Postcard from Vladimir Larionov to Cook-Deegan concerning invitation to USSR Institute of Cytology . ● Letter from Vladimir Larionov and N.N. Nicolosky (Institute of Cytology of the Academy of Sciences of the USSR) to Cook-Deegan (July 3, 1989). Invitation to visit Institute of Cytology in USSR. ● Memo from Cook-Deegan to Senator John Glenn (August 21, 1989). Request for articles to submit to the Institute of Marxism-Leninism in Moscow. ● Memo from Cook-Deegan to Senator Albert Gore Jr. (August 21, 1989). Request for articles to submit to the Institute of Marxism-Leninism in Moscow. ● Letter from Cook-Deegan to Michael Resnick (National Institute of Environmental Health). Encouragement to visit USSR Institute of Cytology. ● Letter from M. Mehedlov to Cook-Deegan. Invitation to participate in “On the Threshold of the XXI Century- a Dialogue of Scholars”. ● Draft outline of “Humanity of on the Threshold of the XXI Century- a Dialogue of Scholars” monograph. ● Letter from Natasha Kouprina to Cook Deegan (July 17, 1989). Two papers enclosed. ● Letter from Cook-Deegan to David Bonstein (Genetech) and Ronald Davis (Stanford) (July 24, 1989). One of Koprina’s papers attached: Larionov, Kouprina, Strunnikov, and Vlasov, “A direct selection procedure for isolating yeast mutants with an impaired segregation of artificial mini chromosomes”, Current Genetics, Spring 1989, 15: 17-25. Cook-Deegan Box 25/28

● Memo from Cook-Deegan to Natasha Kouprina (July 10, 1989). Concerning Kouprina’s work in the US. ● Letter from Cook-Deegan to M.A. Resnick (July 10, 1989). Concerning Resnick’s upcoming trip to Leningrad. ● Letter from Phillip Hieter (Hopkins) to N.N. Nickolski (May 19, 1989). Invitation to extend Kouprina’s length of stay in the US. ● Report: N.I. Lukina, T.R. Soidla, “Searching for giant non-nucleosomal DNA- protein complexes in eukaryotic genomes”, Leningrad Polytechnical Institute, USSR Academy of Sciences. ● Letter from Cook-Deegan to Michael Waterman (July 12, 1989). Concerning possible modeling research with Tonu Soidla (Leningrad). ● Letter from Anne Cook to Cook-Deegan (July 14, 1989). Contact information for USSR scientists enclosed. ● Draft report: Larionov, Hieter, Kouprina, and Vlasov, “A direct selection procedure for isolating yeast mutants with an impaired segregation of artificial minichromosomes”, Current Genetics. Spring 1988. ● Letter from Cook-Deegan (October 2, 1989) to Mark Adams (UPenn). Concerning the history of Soviet biology. ● Letter from Cook-Deegan (October 2, 1989) to Elena Lavina (USSR). Concerning history of Soviet biology. ● Handwritten notes (2 pages). ● Postcard from Emma Tolosa to Cook-Deegan. ● Trip report: Gerson S. Sher, USSR June 21-July 1, 1989.

Folder UNESCO

● Letter from Jorge Allende (Latin American Network of Biology) to Cook-Deegan (February 14, 1990). Attached: Translated copy RELAB resolution on the human genome, Regional Executive Council of RELAB; participants list in RELAB meeting. ● Report: International Biosciences Newtwoks (IBN), UNESCO (1989). ● Letter from V. Zharov (UNESCO) to Cook-Deegan (October 29, 1990). Attached: list of possible human genome project members from the third world; Working Plan of the Latin American Human Genome Program (PLAGH), Santiago (June 30, 1990). ● Letter from Svelana Matsui (UNESCO) to Cook-Deegan (December 4, 1990). Attached: List of researchers and fellowships at UNESCO/TWAS fellowship. ● Report: “UNESCO/TWAS short-term fellowship programme in the human genome”, UNESCO/TWAS human genome fellowship committee, November 1990. ● Letter from V. Zharov (UNESCO) to Cook-Deegan (July 16, 1990). Attached: UNESCO’s Programme in the Human Genome- Workplan for 1990; “Cours regional theorique et pratique de biologie moleculaire”, ICSU-UNESCO, January 1991. ● Article: David Dickson, “Unesco seeks role in genome projects”, Science vol. 243, 1431 (March 17, 1989). Cook-Deegan Box 25/28

● Article: G. Christopher Anderson & Peter Coles, “United States still angry”, Nature vol. 344, 801 (April 26, 1990). ● Statement by Walter A. Rosenblith (MIT) before Committee on Foreign Relations in the Senate, “Unesco and US scientific intersts”, April 19, 1989. ● Article: Santiago Grisolia, “Mapping the Human Genome”, The Hastings Center Report, 19 (July 1989). ● Article: Leslie Roberts, “Carving up the human genome”, Science vol. 242, 1244 (December 2, 1988). ● Roster: UNESCO’s Scientific Co-ordinating Committee (SCC) for Programme on the Human Genome. ● Memo from Cook-Deegan (January 26, 1990) to Svetlana Matsui. Concerning fellowship applications. ● Letter from Cook-Deegan (August 15, 1990) to Colleagues. Attached: Application for Unesco/TWAS fellowship. ● Memo from Cook-Deegan to Formosa-Gauci (September 6, 1990). Concerning Unesco committee meeting. ● Memo from Cook-Deegan to Svetlana Matsui (October 4, 1990). Travel arrangements for fellowship meeting. ● Memo from Cook-Deegan to Diane McLaren (November 27, 1990). Concerning Genome programs in Europe. ● Article: “Bhargava for national debate on genome mapping”, Hindustan Times February 6, 1990. ● Memo from Cook-Deegan to Formosa-Gaui (November 27, 1990). Concerning Bertrand Jordan trip to Europe, US, and Japan. ● Letter from Cook-Deegan to Jim Watson, Elke Jordan (January 19, 1989). Concerning the UNESCO genome committee meeting. ● Fax from Federico Mayor to Cook-Deegan (January 15, 1990). Invitation to become member of SCC on UNESCO. Attached: SCC charter. ● Article: Rajendra Prabhu, “US help in research irks biologist”, Hindustan Times, (February 6, 1990). ● Article: “Objections to genome project”, Times of India (February 6, 1990). ● Letter from Bernadette Modell (Middlesex) to Cook-Deegan (November 28, 1990). Request to be withdrawn from proposal to UNESCO committee. ● Letter from Nancy Wexler to Cook-Deegan (December 10, 1990). Request to be withdrawn from proposal to UNESCO committee. ● Memo from Cook-Deegan to Mary-Claire King (April 24, 1991). Concerning Unesco meeting June 23-24. Quote: “Being responsible and nice is a bitch.” ● Letter to A. Badran (Unesco) from Cook-Deegan (April 24, 1991). Recommendation for King to BCD’s position on Unesco. ● Fax from S. Matsui (Unesco) to Cook-Deegan (May 13, 1991). Concerning SCC meeting dates.

Folder the institute of religion: genetics religion and ethics

● Working plan: National Study Conference of Genetics, Religion and Ethics Cook-Deegan Box 25/28

● Report: Francis Collins, “Implications of the Human Genome Project for medical practice” (March 31, 1990). ● Participant list: Genetics, Religion and Ethics Tiennium 1990-1992. ● Article: George W. Cornell, “Genome humanity’s new scapegoat”, Anchorage Times (January 20, 1990). ● Article: Cecile White, “Genetics and ethics”, Houston Chronicle (March 24, 1990). ● Article: George W. Cornell, “Humanity finds new scapegoat for sin”, Sarasota Herald-Tribune (January 20, 1990). ● Report: J. Nelson, “Changing concepts of human life, nature and identity”, Conference on “Genetics, Religion, and Ethics” (March 30-April 1, 1990). ● Report: John Fletcher, Dorothy Wertz, “Ethical futures of autonomy and privacy after the genome is mapped”, Genetics Religion and Ethics Conference (March 31, 1990). ● Program: Genetics, Religion and Ethics, National Conferences 1990, 1992.(March 30-April 1, 1990). ● Policy Statement: “Genetic Science for Human Benefit”, National Council of the Churches of Christ, USA. ● Report: “The Church and Genetic Engineering”, Seventeenth General Synod, United Church of Christ, Fort Worth, Texas (1989). ● Selected bibliography: Genetics Religion and Ethics Conference (March 30-April 1, 1990)

Folder R.M. Cook-Deegan

● Letter from V. Zharov to Cook-Deegan (February 20, 1990). Attached: List of participants and minutes: 1st Meeting of Unesco Scientific Co-ordinating Committee (SCC), (February 1, 1990). ● Letter from Federico Mayor (Unesco) to Cook-Deegan (January 15, 1990). Invitation to join SCC. Attached: “Proposed Structure and Role of the SCC”, Charter. ● Report: “The participation of developing countries in the human genome project. The Latin American example: a regional approach”, Unesco, Latin American Network of Biological Sciences. th ● Report: “Scientists message on the Human Genome Project to the 25 session of Unesco’s General Conference”. ● Report: “Recommendations to the Director-General of Unesco from the consultative group convene in Moscow on 26-27 June 1989”. ● Report: “IBRO/Unesco Fellowship Programme”, Intl. Brain Research Organization. st ● Provisional agenda: Unesco SCC 1 Meeting (February 1, 1990). ● Contact information fro Asli Tolun (Bogaziçi University, Turkey). ● Outline of Unesco’s programme and activities in the Human Genome (1990- 1991). ● Tentative program: “Human Genome Research: Strategies and Priorities”, CoGene, Unesco, FEBS, EEC (January 29-31, 1990). Cook-Deegan Box 25/28

● Facsimile from Giorgio Bernardi (Committee on Genetic Experimentation) to Cook-Deegan (January 11, 1990). Invitation to attend Paris symposium “Human Genome Research: Strategies and Priorities”. ● Letter from Cook-Deegan (January 10, 1989) to Giorgio Bernardi. Accepting the invitation to Paris symposium. ● Letter to V. Zharov from Cook-Deegan (January 19, 1990). Accepting the position on the SCC. ● Letter from Cook-Deegan (January 23, 1990) to Svelana Matsui. Concerning February 1 Unesco meeting. ● Letter from Jane Paterson (DoHHS) to NCHGR Staff (January 18, 1990). Change of address. ● Letter from Cook-Deegan (January 18, 1990) to Jim Watson. Concerning Japan Economic Journal reporter. ● Note from Cook-Deegan (January 24, 1990) to Diane Hinton. Concerning Unesco. ● Draft letter from Ben Barnhart and Jim Elke. Request for information on Hugo. ● Letter from Cook-Deegan (January 19, 1989) to Jim Watson. Concerning Paris SCC meeting. ● Facsimile from Svetlan Matsui to Cook-Deegan (January 24, 1990). Concerning hotel arrangements. ● Contact information: Yegor S. Vassetzky, Englehardt Institute. ● Article: Peter Coles, “Unesco on trial in Paris”, Nature vol. 342, 6 (November 2, 1989).

Folder R.M. Cook-Deegan

th ● Travel effects: plane ticket, map of Paris, map of the 7 arrondissement. ● List of participants: Consultation on international cooperation on the human genome (February 10, 1989). ● Letter from Federico Mayor (Unesco) to Cook-Deegan (April 6, 1989). Attached: notes on salient points raised during the Paris consultation (February 10, 1989). ● Memo from Cook-Deegan to Federicao Mayor (February 16, 1989). Notes following Paris meeting (February 10, 1989). ● Letter from Nemat Hashem (Ain Shams University) to Cook-Deegan (November 10, 1987). Request for OTA report. ● Letter from Jiayao Li (Secretary for Science and Technology, PRC) to Jacqueline Courteau (October 26, 1987). Request for report. ● Letter from James Chamberlin to Jacqueline Courteau (August 14, 1987). Attached: list of Brazilian genome researches. ● List: Mexican researches in the field of human genetics. ● Handwritten notes (2 pages). Unesco. ● Memo from Cook-Deegan to Unesco Director General (May 5, 1989). Concerning Moscow meeting visa. Cook-Deegan Box 26/28

Folder Canada

● Letter from Charles R. Scriver (McGill University Children’s Hospital) to Cook- Deegan (December 13, 1990). Thanks for invitation to conference. ● Letter from Charles R. Scriver to Cook-Deegan (May 7, 1991). Concerning criticism of “Passion for Life” book. ● Letter from R.G. Worton (Hospital for Sick Children) to Cook-Deegan (October 17, 1990). Request for materials for Canadian Human Genome Committee conference. ● Letter from R.B. Church (University of Calgary) to Cook-Deegan (June 7, 1991). Report attached: “Report from the Inter-Council Human Genome Advisory Committee to Granting Councils”, Lews Slotin ● Article: Diane Brady, “Breaking the code: the world examines the mysteries of genes”, Maclean’s (August 27, 1990).

Folder Articles on intellectual property biotech patents, copyrights, etc.

● Journal Article Reprint: Susan Rosenfeld, “Sharing of Research Results in a Federally Sponsored Gene Mapping Project”, Rutgers Computer and Technology Journal. vol. 14(2), (1988) ● Letter from James H. Furr to Cook-Deegan (August 21, 1990). Records of National Study Conference on Genetics, Religion, and Ethics enclosed. ● Note from Susan C. Rosenfeld to Cook-Deegan (December 6, 1990), article attached: Susen Rosenfeld, “Genome Commentary” draft 8. ● Article: Steve Connor, “A licence on life”, New Scientist vol. 20, 27-33 (1987). ● Article: Arthur Klausner, “Patent office reorganizes biotech coverage”, Bio/Technology vol. 6, 368 (April 1988). ● Research Report: Koniarek, J.P., Coleman, K.D., “Patents and Patent Office Resources in Biotechnology”, BioTechniques vol. 6(2), 148-153 (1988). ● Article: David E. Korn, “Patent and trade secret protection in university-industry research relationships in biotechnology”, Harvard Journal on Legislation vol. 24, 191-238 (Winter 1987). ● Article: Irving Kayton, “Copyright in living genetically engineered works”, George Washington Law Review, vol. 50(2), 191-218 (January 1982). ● Article: Richard H. Jones, “Is there a property interest in scientific research data?”, High Technology Law Journal vol. 1, 447-482 (1987). ● Article: Leslie Roberts, “Who owns the human genome?”, Science vol. 237, 358- 361 (July 1987). ● Letter from Laurence Tribe (Harvard Law) to Frank Press (August 1, 1991). Enclosed: Part 91 of Genetics Institute Inc v. Amgen Inc, Petition for writ of certiorari, US Supreme Court (October 1991). ● Newsletter: Morrison & Foerster Practice Area Bulletin, “European Commission’s proposed directive on the legal protection of biotechnological inventions” (July 1989). ● Note from Daryl to Cook-Deegan (March 7, 1988), Article enclosed: Robert J. Yales “The Genome Project” NY Times Magazine pg. 14, (March 6, 1988) Cook-Deegan Box 26/28

● Article: Guy Durst, “Patent backlog stymies biotech industry”, Associated Press (April 4, 1988). ● Article: Geoffrey M. Karney, “The Last Word: Hysteria in the Halls of Congress”, BioTechnology vol. 5, 992 (September 1987). ● Article: Susan Rosenfeld “Patients’ legal rights to their own tissues still at center of Moore case”, Genetic Engineering News (November-December 1988). ● Report: New York State Bar Association, Task Force on Simplification of the Law, “Legal Complexity and Industrial Competitiveness” (May 1989). ● Article: AP, “Patents disputed in biotechnology”, NY Times (March 9, 1987). ● Article: Brendan Fowlston, “Biotechnology patents in Europe”, BioTechnology vol. 6, 911-912 (August 1988). ● Article: Robert Benson, “Patent wars”, BioTechnology vol. 4, 1064-1070 (December 1986). ● Article: Robert Payne, “The emergence of trade secret protection in biotechnology”, BioTechnology vol. 6, 130-131 (February 1988).

Untitled Folder 1

● Letter from Bo Andreassen Rix (Danish Council of Ethics) to Cook Deegan (July 13, 1990). Enclosed: Copies of the genome program of the European Communities. ● Council Decision: Council of the European Communities, “Adopting a specific research and technological development programme in the field of health: human genome analysis”, Official Journal of the European Communities (June 29, 1990). ● Note from J. Holt (Commission of the EC) to Cook-Deegan (August 14, 1990). Enclosed: Opinion of the Economic and Social Committee on the council decision (December 14, 1988). ● Draft proposal for council decision, “Adopting a specific research programme in the field of health: predictive medicine”, Commission of the EC (1988). ● Modified proposal for council decision, “Adopting a specific research programme in the field of health: human gene analysis”, (November 1989). ● Note from J. Holt (Commission of the EC) to Cook-Deegan (August 31, 1990). Enclosed: European Parliament Committee on Energy, Research, and Technology, “Common position on a proposal for a council decision adopting a specific research programme in the field of health: predictive medicine: human genome analysis” (January 17, 1989).

Folder HUGO

● Draft: HUGO outline, general operational structure (1990). ● Note from Victor McKusick (Johns Hopkins Hospital) to Cook-Deegan. Request for comments on enclosed: letter from McKusick to possible founding members of HUGO (May 3, 1988). ● Article: Leslie Roberts, “Human genome goes international”, Science pg. 165 (July 8, 1988) . ● Proposed charter: HUGO (September 7, 1988). Cook-Deegan Box 26/28

● Article: Joseph Palca, “Human genome organization is launched with a flourish”, Nature vol. 355, 286 (September 22, 1988). ● Article: Christine McGourty, “A new direction for HUGO”, Nature vol. 342, 724- 725 (December 14, 1989). ● Article: Peter Aldhous, “Imperial’s Wellcome support”, Nature vol. 344, 5 (March 1, 1990). ● Facsimile from Charles Cantor (Berkeley) to Cook-Deegan (September 27, 1990). Enclosed: Draft memo to HUGO America ad-hoc Mapping Committee (August 24, 1990). ● Article: Frank Blanchard, “The Howard Hughes Medical Institute awards $1 million grant to the Human Genome Organisation” (May 3, 1990). ● Letter from Charles Cantor (Berkeley) to Nature, “HUGO physical mapping”, vol. 345, 106 (May 10, 1990). ● Article: “Gene mappers form collaborations”, JAMA vol. 160(17), 2477 (November 4, 1988). ● Minutes: Cold Spring Harbor Meeting on Genome Mapping and Sequencing (April 27-May 1, 1988). ● Memo from Cook-Deegan to Jack Gibbons (July 8, 1988). Enclosed: Draft testimony of Cook-Deegan before the Subcommittee on Natural Resources, Agriculture Research, and Environment, and the Subcommittee on Science, Research, and Technology of the Committee on Science, Space, and Technology, US House of Representatives (July 14, 1988). ● Charter: HUGO ● Letter from Victor McKusick to J.W.M. la Rivière (December 5, 1988). Enclosed: copy of Charter Statement of HUGO. ● Facsimile from Walter Bodmer (HUGO) to Federico Mayor (UNESCO), declining Mayor’s request to join UNESCO coordinating committee. ● Roster: HUGO executive council (December 1989). ● Roster: HUGO executive council (March 1990). ● Article: “HUGO news: the Human Genome Organisation: history, purposes, and membership”, Genomics vol. 5, 385-387 (1989). ● Article: Christine McGourty, “A new direction for HUGO”, Nature vol. 342, 724- 725 (December 14, 1989). ● Memo from Cook-Deegan to James Wyngaarden (November 9, 1990). Concerning HUGO workshop organization. ● Facsimile from James Wyngaarden to Walter Bodmer (November 21, 1990). Enclosed: Draft mission statement of HUGO Americas Office. ● Proposed operating procedures: HUGO (March 1990). ● Draft appointment of HUGO Chief Executive (March 1990).

Cook-Deegan Box 26/28

Folder EEC

● Letter from Cook-Deegan to Joanna Burge (October 17, 1989). Concerning Brussels meeting. ● Article: Robert van der Meer, “European laboratories without walls: focused precompetitive research”, Tibtech vol. 5 (December 1987). ● Article: “EC supports pilot projects for information services”, Science and Technology Policy, no. 461, 12 (August 13, 1987). ● Article: “EC Basic research program undergoing further revision”, Science and Technology Policy, no. 33, 2 (August 14, 1987). ● Roster: Leaders of research teams, contact information for Michael Ashburner (Cambridge Dept. of Genetics). ● Single European Act Articles (July 1987) ● Bulletin of the EC, Single European Act Supplement 2/86 ● Article: Bernard Dixon, “Exchanges, acronyms and more: European collaboration in science and technology” [book review]. ● Proposal for a European Action Plan: Bio-informatics, Commission of the EC (December 1986). ● Report: HJC Berendsen, “A bio-informatics workstation”, Commission of the EC (June 1986). ● Outline of a Community Action in the Field of Medical Informatics, European Research Organization for Advanced Informatics in Medicine, Commission of the EC (August 1986). ● Letter from Mark Cantley (Commission of the EC) to Cook-Deegan (January 20, 1988). Enclosed: review of OTA draft report on mapping the human genome. ● Proposal for a council regulation on a Community Action in the field of Information Technology and Telecommunications applied to health care, EUROAIM, Commission of the EC (July 24, 1987).

Untitled Folder 2

● Reports (2): “BEP, BAP, Biotechnology”, European Community of Research and Technology ● Report: “ESPRIT Progress, Industrial Spinoffs” (March 12, 1987). ● Roster: Expected Attendees to Competitive Perspectives and Marketing (April 22, 1987). ● List of Publications and Reports Related to Community Research and Training in Biotechnology, Commission of the EC (April 15, 1987). ● Letter from Mark Cantley (Science, Research and Development, EC) to Jacqueline Courteau (August 12, 1987). Contact information enclosed. ● Council Decision: Commission of the European Communities, “Adopting a multiannual research action programme for the European Economic Community in the field of biotechnology”, Official Journal of the European Communities (March 12, 1985). ● List of research contracts in the biotechnology action programme (1985-1989), Commission of the EC (June 9, 1987). Cook-Deegan Box 26/28

● List of publications and reports related to community research and training in biotechnology, Biomolecular Engineering Progroamme (1982-1986). Commission of the EC (April 15, 1987). ● Article: Jean-Luc Nothias, “1987 in Europe: A year for serious reflection”, Biofutur, 52-56 (May 1987). ● News brief: “Europe picks its brain”, New Scientist 23 (November 26, 1987). ● Arrticle: Simon Hadlingtion, “European research centres may have to pay their way”, Nature vol. 329: 576 (October 15, 1987). ● Facsimile from Alexendra May (Commission of the EC) to Cook-Deegan (April 9, 1991). Request for information concerning EEC and bioethics. ● Article: Lars H. Briemer, “European Community actions”, Nature vol. 351, 599 (June 20, 1991).

Folder EEC Plans

● Proposal for a Council decision: Commission of the EC: “Adopting a specific research programme in the field of health: Predicitve Medicine: human genome analysis (1989-1991)” (October 3, 1988).

Folder Europe

● Draft report: Peter Newmark, “Mapping and Sequencing the Human Genome in Europe” (July 16, 1987). ● Facsimile: Text of GTA Note 244, “UK human genome mapping project” (April 1989). ● Article: Lennart Phillipson, “Turmoil in European biology”, Nature vol. 351, 9 (May 9, 1991). ● Article: Steven Dickman, Peter Aldhous, “Helping Europe comepete in human genome research”, Nature vol. 350, 261 (March 28, 1991). ● Article: David Dickson, “Britain launches genome programme” (March 31, 1989). ● Article: David Dickson, “Genome project gets rough ride in Europe” (February 3, 1989). ● Article: Lennart Phillipson, John Tooze, “The human genome project”.

Untitled Folder 3

● Letter from A. Gallochat (Institut Pasteur) to Cook-Deegan (April 6, 1988). Enclosed: Report, “SIDA: Les Fait L’Espoir”, Luc Montagnier. ● Contact information: Michael Esptein (Attorney), Alain Gallochat (Institut Pasteur).

Cook-Deegan Box 26/28

Folder ESF/McLaren ● Facsimile from Diane McLaren to Cook-Deegan (May 14, 1991). Concerning the Academia Review. ● Memo from Cook-Deegan to Diane McLaren (May 31, 1991). Concerning McLaren’s reports. ● Facsimile from McLaren to Cook-Deegan (April 5, 1991). Concerning contact information for Academia Europaea ● Facsimile from McLaren to Cook-Deegan (December 5, 1990). Request for information on genome research.

Folder Europe on the Move Italy and Dulbecco; ICRF; Frezal gets ucks in Brussels; Spain 1988-1989

● Article: Max Pereutz, “The art of planning and managing a research laboratory”, The Scientist vol. 11, 11-14 (August 8, 1988). ● Article: Ben Martin, John Irvine, Francis Narin, Chris Sterritt, “The continuing decline of British science”, Nature vol. 330, 123-126 (November 12, 1987). ● Article: Marjorie Sun, “A biotech enterprise Soviet style”, Science vol. 241, 1154- 155 (September 2, 1988). ● Article: David Dickson, “Europe seeks strategy for biology”, Science vol. 240, 710-712 (May 6, 1988). ● Classified: Senior Research Officer, Human Genome Mapping Project, Imperial Cancer Research Fund. ● Letter from Peter Mombaerts (MIT) to Cook-Deegan (October 11, 1988). Attached: Article by Mombaerts, “Menseljik Genoom-Initiatief: van controverse tot consensus”, De Standaard (July 30, 1988). ● Article: Leslie Roberts, “Carving up the human genome”, Science vol. 242, 1244- 1246 (December 2, 1988). ● Article: David Dickson, “Genome project gets rough ride in Europe” (February 3, 1989).

Cook-Deegan Box 26/28

Untitled Folder 4

● Draft report: “Map of Man” (February 10, 1986). ● Proposal for a Council decision: Commission of the EC: “Adopting a specific research programme in the field of health: Predicitve Medicine: Human Genome Analysis (1989-1991)” (July 20, 1988). ● Letter from Cook-Deegan to Benadette Modell (October 30, 1989). Comments on draft report for EEC. ● Letter from Bronwen Loder to the members of the Study Group of Ethical, Social and Legal Aspects (ESLA) of Human Genome Analysis Programme (September 19, 1989). Attached: Draft Agenda for October 20, 1989. ● Letter from Cook-Deegan to NIH Center for Human Genome Research (October 22, 1989). Report of Study Group 10/20 ESLA meeting agenda and expenses. Receipts attached. th ● Report: “Information Document on the 4 Medical and Health Research Programme 1987-1991, (MHR4)”, February 1989. ● Report: “Catalogue of Research Programmes within the Framework Programme of the European Community 1987-1991”, ECC (September 1, 1989). ● Shipping receipts for documents from Impreiral Cancer Research Fund. ● Facsimile from Bronwen Loder to Cook-Deegan (October 17, 1989). Concerning 10/20/89 meeting for ESLA. Map of Brussels attached. ● Letter from Cook-Deegan to Loder (October 16, 1989). Concerning 10/20/89 ESLA meeting. ● Map of Brussels. ● Report: Ethical, social, and legal aspects of the Human Genome Project, “Some reflections about technology assessment in this field”. ● Letter from Bronwen Loder to members of the Chairman’s Subcommittee of the Human Genome Analysis Programme (September 19, 1989). Concerning 10/20/89 Meeting. Attached: Draft agenda for meeting; Report of the Ad Hoc Working Party on the Human Genome Analysis to the CGC (June 19, 1989). ● Letter from Bernadette Modell to Cook-Deegan (November 6, 1989). Concerning Cook-Deegan’s comments on Modell’s report.

Cook-Deegan Box 27/28

Folder Review of OTA project 6/91 Daniel Kotin, UC Berkely ● Letter from Dan Kotin to Cook Deegan (June 26, 1991), concerning paper written for Berkeley class. ● Term Paper: “Puruing Uncertainty: A Study of the US Congress’ Office of Technology Assessment Report, Mapping our Genes- Genome Projects: How big, how fast?”, by Daniel Kotin (May 17, 1991)

Folder Models for Geriatric Education ● Proposal: “Establish a national center for collection, and computer storage and analysis of nucleic acid sequences”, Los Alamos Labs (December 17, 1979) ● Letter from Walter Goad (Los Alamos Labs) to Cook-Deegan (August 12, 1988). Historical materials enclosed. ● Article: “Bionet Bites the Dust”, Science vol. 245, 126. ● Workshop proposal: “Acquisition, Integration, and Analysis of Molecular Genetic Information Using Modern Computational Techniques”, Aspen Center for Physics (August 30- September 18, 1982) ● Progress Report: “Biotechnology Resources Program”, from the Workshop on Computational Analysis of DNA Sequences (August 30-September 19, 1982), by Walter Goad ● Articles: Nicholas Wade, “The Complete Index to Man”, Science vol. 211, 33-35 (January 1981). ● S.M. Ulam, “Reflections on the Brain’s Attempts to Understand Itself”, Los Alamos Science no. 15, 283-287 (1987). ● Goad, Walter, “Sequence Analysis- Contributions by Ulam to Molecular Genetics”, Los Alamos Science no. 15, 283-287 (1987). ● Temple F. Smith and Christian Burks, “Searching for sequence similarities”, Nature vol. 301(20), 194 (January 1983). ● Temple F. Smith, “Identification of Common Molecular Subsequences”, Journal of Molecular Biology no. 147, 195-197 (1981). ● Temple F. Smith, “The History of the Genetic Sequence Databases”, Genomics no 6, 701-707 (1990). ● Colin Norma, “How the Soviets got the H-bomb”, (January 12, 1990) ● Karen D. Gruskin, Temple F. Smith, “Molecular genetics and computer analyses”, CABIOS vol. 3(3), 167-170 (1987). ● Walter B. Goad, “Gen Bank”, Los Alamos Science 53-61 (Fall 1983). ● William A. Beyer, Christian Burks, Walter B. Goad, “Quantitative Comparison”, Los Alamos Science 62-63 (Fall 1983). ● Report: “GenBank Current Status and Future Directions”, Los Alamos (June 2, 1989).

Cook-Deegan Box 27/28

Folder Databases and Mathmen ● Book Review: “Stan Ulam”, David Arrowsmith, Nature vol. 342, 137 (November 9, 1989). ● Ian Stewart, “The ultimate in undecidability”, Nature vol. 332, (March, 10 1988). ● RA Fisher, “Anecdotal, Historical and Critical Commentaries on Genetics”, Genetics Society of America vol. 124, 207-211 (February 1990) ● Letter from David F. Warner to Cook-Deegan (November 5, 1987). Article enclosed, Jim Schefter, “Super Searcher”, Popular Science (December 1987). ● Article: “Cleaning up gene databases”, Nature vol. 343, (January 11, 1990). ● Letter from Ralph Roskies (Pittsburgh Supercomputing Center) to Cook-Deegan (December 20, 1989), copy of PSC’s “Biomedical Applications” brochure enclosed. ● Newsletter: Howard Hughes Medical Institute Human Gene Mapping Library Newsletter, vol. 1(3), (August 1988). ● Newsletter: News from GenBank, vol. 1(4) (July/August 1988). ● “Relation of HTLV-4 to simian and human immunodeficiency- associated viruses”, Nature vol. 330, (November 12, 1987). ● Note: from George Rose (Hershey Medical Center) to Cook-Deegan (May 9, 1988), Photo attached. ● Draft report: “Helix Signals in Proteins: The Protein Helix”, George D. Rose, Leonard Presta ● Article: Bob Brewin, “Neural Networks Help Determin DNA’s Status”. ● Bionet Teleconference: “Computer Applications in the Sequencing Large Genomes”, online exchange (December 1, 1987). ● Newsletter: News from GenBank vol. 1(5), (September-December 1988). ● Article: Keth Moffat, “Method in DNA Madness”, Nature vol. 336, 422-423 (December 1988). ● Copy of the “Listing of Molecular Biology databases” [LiMB] (March 29, 1988). ● Sequence Data Submission Form, for GenBank data submission ● Newletter: News from GenBank vol. 1(2), (March 1988). ● Newsletter: Protein Data Bank, no. 46 (October 1988). ● Package to Jacquelin Courteau (Boffice of Technology Assessment, US Congress) from T.A. Steitz (Yale). ○ Letter from Courteau to Steitz, request to use illustration in a publication “New Developments in Biotechnology” (April 13, 1988) ○ Reprint of article, “Structure of large fragment of Escherichia coli DNA polymerase I complexed with dTMP” by Ollis, Brick, Hamlin, Xuong & Steitz, Nature vol. 313, 767-766 (February 28, 1985). ○ Letter from Steitz to Courteau (April 25, 1988), granting permission to use photos ○ Two color photos of Klenow fragment of E. coli DNA polymerase enclosed. ● Copy of book: From Cardinals to Chaos: Reflections on the Life and Legacy of Stanislaw Ulam, ed. Necia Grant Cooper, Cambridge Press (1989).

Cook-Deegan Box 27/28

Binder Genes and Machines, Internation Symposium and Workshop 8/13-18/89 ● Attendee List: Macromolecules, Genes, and Computers- Chapter 2 (August 13-18, 1989). ● Letter from Karen D. Grusken to Cook-Deegan (November 22, 1988). Invitation to Genes and Machines Symposium. ● Letter from Cook-Deegan to Karen Gruskin (January 10, 1988). Request for application to symposium. ● Presentation slides: “Biocomputing Research Unit”, Dept. of Molecular Biology, University of Edinburgh. ● Symposium abstract form: Macromolecules, Genes, and Computers- Chapter 2 ● Abstract listing: Macromolecules, Genes, and Computers- Chapter 2 ● Invited Speaker abstract: Macromolecules, Genes, and Computers- Chapter 2 ● Invitation to dinner party: Macromolecules, Genes, and Computers- Chapter 2 ● Waterville Valley and White Mountain Conference Center information packet ● Conference Program: Macromolecules, Genes, and Computers- Chapter 2 ● Handwritten notes from conference (5 pages) ● Report: Robert Epstein, “Today’s Technology is Producing High-Performance Relational Database Management Systems”. ● Notice of thanks, Macromolecules, Genes, and Computers- Chapter 2 ● Report: “This is NCSA”, National Center for Supercomputing Applications, University of Illinois

Cook-Deegan Box 28/28

Folder NIH Genomics APV.com (Ethics) ● Letter from Nancy S. Wexler to Cook-Deegan (August 9, 1989). Columbia University. ● Letter from Elke Jordan to Cooke-Deegan (June 28, 1989). DoHHS. ● Letter from Cook-Deegan to Leroy Walters (June 6, 1989). Outline of talk for National Conference of Lawyers and Scientists. ● Report: NIH Guide for Grants and Contracts (March 3, 1989) ● Letter from Eric T. Juengst to Cook-Deegan (June 27, 1989). Concerning Juengst’s article. ○ Postscript to Letter (June 28, 1989). Request for names of industrial representatives ○ Memo from Cook-Deegan to Eric Juengst (July 12, 1989). Contact information. ● Letter from Cook-Deegan to Judge C. Byk (July 14, 1989). Congressional Bioethics Advisory Committee, response to questionnaire. ● Letter from Rebecca Dresser to Nancy S. Wexler (April 4, 1989). Concerning ethics subcommittee of the HGP. ○ Letter from Paul R. Billings to Nancy Wexler (March 20, 1989) ○ Letter from Sissela Bok to Nancy Wexler (March 30, 1989) ● Roster of Ethics Working Group for Program Advisory Committee on the Human Genome ● Letter from Cook-Deegan to Mark A. Rothstein (August 11, 1989). Proposed HGP conference schedule enclosed. ● Letter from Cook-Deegan to Luca L. Cavalli-Sforza (August 22, 1989). Request for Genomics article. ● Article: Annas, George J., “Who’s Afraid of the Human Genome?”, Hastings Center Report (July/August 1989). ● Article: Grisolia, Santiago, “Mapping the Human Genome”, Hastings Center Report (July/August 1989). ● Memo from Cook-Deegan to Nancy Wexler (August 24, 1989). Outline for Board of the American Council for Life Insurance talk enclosed. ○ Outline of talk (August 1989) “Implication of Advances in Human Genetics” ● Letter from Cook-Deegan to Albert Gore Jr. (August 29, 1989). Invitation to speak. ● Letter from Charles R. Scrivner to Cook-Deegan (August 29, 1989). Science Council of Canada. ● Memo from Paul Billings to Cook-Deegan. Billings report draft. ● Note from Judge C. Byk to Cook-Deegan (June 26, 1989). ○ Letter from Cook-Degan to Judge C. Byk (July 14, 1989). Response to questionnaire. ○ Letter from Judge C. Byk to Cook-Deegan (May 20, 1989). Questionnaire enclosed. ○ Letter from Judge C. Byk to Cook Deegan (October 12, 1989). Reply to questionnaire response. ● Notes on biological markers, genetic screening, and policy implications Cook-Deegan Box 28/28

Folder CSH 89 Genome Massing & SCQ II 4/25 30/89 ● Business cards: Larry Thompson, Washington Post; Neojsa Avdalovic, Beckman Instruments Inc.; Jan Witkowski, Cold Spring Harbor Laboratory; Lois Wingerson, freelance writer. ● Newsletter: Harbor Transcript, Cold Springs Harbor Laboratory (Spring 1989). ● Receipt: Ramada Inn, Cook-Deegan (May 22, 1989) ● Letter from Cook-Deegan to David Miller (May 18, 1989). Conference expenditures , receipts enclosed. ● Letter from Cold Spring Harbor Laboratory to Cook-Deegan (1990). Poster enclosed.

Not in Folder ● Package from March of Dimes Foundation to Cook-Deegan (November 1989) ○ Letter from Anne Harrison-Clark to Cook-Deegan (November 2, 1989). March of Dimes Iowa research information and Starter Scholar Research awards information enclosed.

Folder Alliance for Aging Research ● Conference registration forms (2): Unlocking Potential: The Promise of the Human Genome Initiative. ● Letter from Sharon L Cohen to Cook-Deegan (February 23, 1989). Genome conference program enclosed. ● Speaker biographies ● Letter from R. Mark Evans to Cook-Deegan (May 11, 1989). Letter of appreciation. ● Memo from Sharon L. Cohen to Cook-Deegan (April 18, 1989). Speaker biographies enclosed ● Letter from Daniel Perry to Cook-Degan (July 7, 1988). Meeting request. ○ Testimony: Norman G. Anderson before the Senate Committee on Energy and Natural Resources (September 17, 1987). ○ Article: “Genome Initiative Gathers Momentum”, the Alliance Reports. Summer 1988. ○ Report: “Opportunities for Aging Research in the Fiscal Year 1989 Budget”, Task Force for Aging Research Funding. ○ Articles: “More Spending Urged for Research on Afflictions of the Elderly”, Washington Post (May 24, 1988). ○ “Group Urges More Funds for Elderly Health Research”, Miami Herald (May 24, 1988). ○ “Groups Push Research to Aid Senior Citizens”, Chicago Tribune (May 24, 1988). ○ “More Funds Sought for Geriatrics”, St. Louis Post-Dispatch (May 24, 1988). ○ Koch, Wendy. “Diseases of Aging Studied”, Ottawa Daily Times (May 23, 1988). Cook-Deegan Box 28/28

○ Moss, Desda. “Medicare Expansion Seen As a ‘First Step’, Not a Cure- all”, USA Today (June 13, 1988). ● Pamphlets (2) for Unlocking Potential: The Promise of the HGI ● Subfolder Unlocking Potential: The Promise of the HGI ○ Letter from Dan Perry to Cook-Deegan (June 16, 1989). Information on the Alliance for Aging Research enclosed. ○ Remarks of Senator Lawton Chiles for the conference (April 23, 1989). ○ Notes taken on JW Marriott Hotel paper ○ Conference schedule ○ Article: Friend, Tim. “Genetic map will point to diseases’ origin”, USA Today (April 25, 1989). ○ List of contacts ○ List of conference attendees. ○ Article: “Genetic research holds both promise, danger”, USA Today (April 24, 1989). Interview with Nancy Wexler

Folder NIH Genome Ethics 1st Mtg 9/14-15/89 ● Roster of Ethics Working Group for Program Advisory Committee on the Human Genome ● Agenda of Ethics Working Group (September 14-15, 1989). Notes taken on backside of Agenda ● Report: NIH Guide for Grants and Contracts (March 3, 1989) ● Letter from Dorothy C. Wertz to Elke Jordan (August 3, 1989). Survey proposal Ethical Issues in Mapping Human Genome enclosed. ● Report: Division of Research Programs, National Endowment for the Humanities (March 1989). ● Report: Review procedures, Directorate for Science and Engineering Education. ● Report: Summary of Grants, FY 1984-1986, National Science Foundation (March 1987). ● Program Flyer: Ethics and Values Studies in Science, Technology and Society, National Science Foundation (1989). ● Report: EVS Awards: Biomed Ethics Related FY 1986-1988. Ethics and Values in Technology and Society ● Project Report: “The Ethics of Human Germ-Line Intervention: Moral Choice Under Uncertainty”, NSF 1988 ● Report: “The Potential Role of Genetic Testing in Risk Classification”, Genetic Testing Committee of the American Council of Life Insurance (1989) ● Letter from Cook-Deegan to Nancy Wexler (October 18, 1989). Contact information ○ Facsimile from Cook-Deegan to Nancy Wexler ○ Letter from Bettie Graham to Cook-Deegan (November 28, 1989). Concerning conference. ○ Report: Jan Beckwith, “Eugenics”. ● Letter from Elke Jordan to Barbara Jordan (November 20, 1989). Invitation to workshop. Cook-Deegan Box 28/28

○ Letter from Elke Jordan to Ian M. Rolland (November 20, 1989). Invitation to workshop. ○ Letter from Bettie Graham to Cook-Deegan (November 14, 1989). Working Group on Ethical, Legal and Social Issues related to Mapping and Sequencing the Human Genome report draft enclosed. ● Draft overview of NSF and NEH Programs relevant to HGI (1989)

Folder Murray/Walters NIH Proposal Other Proposals 1. Rothstein 2. AAS 3. Murray ● Letter from Thomas H. Murray to Cook-Deegan (September 6, 1989). Proposal renewal form enclosed. ● Schedule for the Genome Project Conference (March 14, 1991) ● Letter from Thomas H. Murray to Cook-Deegan (May 4, 1989). Request for biographic sketch. ● Research Proposal: “Ethics & the Human Genome Initiative”. ● Facsimile from Cook-Deegan to Beth Poole (1989) Information for NIH Grant Proposal. CV enclosed. ● Facsimile from Barry Gold to Cook-Deegan (September 25, 1989). Draft of project proposal enclosed. ○ Letter from Cook-Deegan to Barry D. Gold (September 26, 1989). Letter of appreciation. ● Pamphlet: “Faithful Witness on Today’s Issues”, Bioethical Concerns. ● Letter from Thomas Murray to Cook-Deegan (September 28, 1989). NIH review enclosed. ● Letter from Mark Rothstein to Cook-Deegan (September 26, 1989). Program schedule for Genome Project Conference enclosed. ● Memo from Barry Gold to NCLS Genetics Advisory Committee (October 6, 1989). Proposal for “Ethics and Legal Implication of Genetic Testing” research enclosed. ● Letter from Bob Nelson to Cook-Deegan (October 23, 1989). ○ Letter from Bob Nelson to Cook-Deegan (August 31, 1989). Invitation to conference “Genetics, Religion and Ethics”. Conference plan enclosed.