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 1
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 1
Box Listing
Cook-Deegan Box 1/9
Folder 1 ● Article: M. Mitchell Waldrop. “Learning to Drink from a Fire Hose.” Science, Vol 248. May 11, 1990. ● Article: M. Mitchell Waldrop. “Computer Genome is Full of Junk DNA.” Science. May 2, 1986. ● Article: Roger Lewin. “Chance and Repetition.” Science, Vol 240. April 29, 1988. ● Letter: Unknown to unknown (1st draft). October 14, 1994. ● Article: Steven Dickman. “Where there’s no will…” Nature, Vol 345. June 7, 19__. ● Report: Michael S Waterman ( Uni Southern CA: Departments of Mathematics and Molecular Biology). International Nucleotide Databases: Advice and Consent. ● Article: Diane Gershon. “Protecting US biotech firms.” Nature, Vol 352. July 4, 1991. ● Letter from Janyce N Hedetniemi to Robert Mullen Cook-Deegan. Attch: Budget history for Genetics Program Branch of NIGMS. July 8, 1992. ● Article: Ian Mundell. “Europe drafts a convention.” Nature, Vol 356. April, 1992. ○ Article: David Swinbanks. “When silence isn’t golden.” Nature, Vol 356. April, 1992. ● Article: Christopher Anderson. “New French genome centre aims to prove that bigger really is better.” Nature, Vol 357. June 18, 1992. ● Interview between Tom White and Paul Rainbow. January 23. ● Article: David Concar. “French find short cut to map of human genome.” New Scientist. May 23, 1992. ● Article: Victor A McKusick. “The defect in Marfan Syndrome.” Nature, Vol 352. July 25, 1991. ● Book (in French): J.P .Gaudilliere. Chimie biologique ou biologie moleculaire? LA biochimie au CNRA dans les annees soixante. Cahiers pur l’histoire du CNRS. Page 90- 147. ● Article: Roger Lewin. “Proposal to Sequence the Human Genome Stirs Debate.” Science, Vol 232. June 27, 1986. ● Article: S.G. Oliver, v Q.J.M. van der Aart, M.L. Agostoni-Carbone, etc. “The complete DNA sequence of yeast chromosome III.” Nature, Vol 357. May 7, 1992. ● Memo from Cook-Deegan to Norton Zinder. HUGO goings-on. December 17, 1991. ● Letter from Dan Perry to Cook-Deegan. August 16, 1988. ● Article: Larry Thompson. “Finding the Gene for the fragile X Syndrome.” Washington Post. June 4, 1991. ● Letter from George M. Woodwell to John H. Gibbons. May 27, 1988. ● Article: Walter Goad. “GenBank-A Retrospective.” News from GenBank, Vol 1 Number 3. May 1988. ● Article: Peter Aldhous. “Slow progress in Geneva on warming treaty.” Nature, Vol 352. July 4, 1991.
Folder 2 ● Memo from Cook-Deegan to Elk Jordan. April 12, 1990. ○ Letter from Joseph D. McInerney to Cook-Deegan, April 6, 1990 ○ Report: The Biological Sciences Curriculum Study and The American Medical Association. Sequencing the Human Genome: Science, Ethics, and Public Policy. April 1990. ● Article: Jean Marx. “Homeobox Genes go Evolutionary.” Research News. January 24, 1992.
Cook-Deegan Box 1/9
Folder 3 ● Article: Eliot Marshall. “Data Sharing: A Declining Ethic?” Science, Vol 248. May 25, 1990. ○ Article: Leslie Roberts. “Genome Project: AN Experiment in Sharing.” Science, Vol 248. May 25, 1990. ○ Article: Eliot Marshall. “Agencies, Journals Set Some Rules.” Science, Vol 248. May 25, 1990. ○ Article: Leslie Roberts. “The Great Clone Giveaway.” Science, Vol 248. May 25, 1990. ● Article: Charlies DeLisi. “ Computers in Molecular Biology: Current Applications and Emerging Trends.” Science, Vol 240. April 1, 1988.
Folder 4 ● Article: Daniel J. Kevles. “Controlling the Genetic Arsenal.” The Gene. Spring, 1992. ● Memo from Bernadine Healy to Cook-Deegan. Genome Book—tying up loose ends. September 7, 1992.
Folder 5 ● Invitation to Winding your way through DNA Symposium ● Letter from David A. Smith to Cook-Deegan. Draft Correction. December 24, 1991. ● Letter from Charles R. Scriver to Cook-Deegan. Draft Correction. July 14, 1992. ● Memo from Ron Worton to Cook-Deegan. Chapter on genome project. July 10, 1992. ● Correspondence between Cook-Deegan and Charles Scriver. Draft Correction. June 30, 1992. ● Article: David Spurgeon. “Canada commits money for human genome research.” Nature, Vol 357. June 11, 1992. ● Invitation to Human Gene Mapping & Sequencing Utah Genome Technology Workshop. ● News: UK Human Genome Mapping Project. Genome News. Number 10. June 1992. ● News: UK Human Genome Mapping Project Genome News. Number 11. September 1992.
Cook-Deegan Box 1/9
Not in Folder (Before Blue Folder) ● Guideline: US Department of Health and Human Services. Program on the Ethical, Legal, and Social Implications of Human Genome Research. ● Letter from Cook-Deegan to James Watson, Elke Jordon, Mark Guyer, Alexandra Stepanian, Ben Barnhart, Diane Hinton, and Science Attache. Attached materials on Japan. January 11, 1989. ● Report: Akihiro Yoshikawa. In search of the “Ultimate Map” of the Human Genome: The Japanese Efforts. ● Memo from Cook-Deegan to Kenishi MAtcubara. Re: Japan genome efforts in international context. July 9, 1989. ○ Letter from Cook-Deegan to Kenichi Matsubara . September 26, 1989. ● Article: Stephen Kreider Yoder. “Japanese Tap Advanced Technology to Accelerate Deciphering of DNA. ● Article: Alun Anderson. “US pressures Japan over imbalances in basic research.” Nature, Vol 329. October 22, 1987. ○ Article: David Swinbanks. “Japanese eye human genome.” Nature, Vol 329. October 22, 1987. ○ Article: David Swinbanks. “Japan keeps its options open on genome sequencing projects.” Nature, Vol 329. October 22, 1987. ● Article: Majorie Sun. “ Consensus Elusive on Japan’s Genome Plans.” Science, Vol 243. March 31, 1989. ● Report: Science and Technology Agency, Government of Japan. Comprehensive Strategy for promoting R&D on Human Genome Analysis. March 27, 1989. ● Report: The Science Council of Japan. The Repost of Special Committee on Bioscience and Biotechnology on the Promotion o the Human Genome Project. May 25, 1989. ● Article: David Swinbanks. “Japan Still seeking a role.” Nature, Vol 342. December 14, 1989. ● Article: Leslie Roberts. “Watson versus Japan.” Science, Vol 246. ● Article: Leslie Roberts. “Japan Boosts Genome Research.” Science. October 27, 1989. ● Article: Akiyoshi Wada. “Japanese Super DNA Sequence Project.” Science & Technology in Japan. ● Memo: from The Tokyo Office of the US National Science Foundation. R&D on Human Gene Analysis and Mapping Systems. August 31, 1987. ● Article: Christopher Anderson. “Watson resigns, genome project open to change.” Nature, Vol 356. April 16, 1992. ● Memo from Cook-Deegan to Nancy Wexler and Jim Watson. International meeting aftermath; request for cover photo. June 23, 1991. ● Report: HHMI. The Annual Report of the Howard Hughes Medical Institute 1990.
Blue Folder ● Left Sleeve: Notes from The Genome Project and the Pharmaceutical Industry. ● Right Sleeve: Notes from The Genome Project and the Pharmaceutical Industry.
Cook-Deegan Box 1/9
Not in Folder ( After blue folder) ● Journal: Natural Genetics. Nature Genetics, Vol 1 No 3. June 1992. ● News: UK Human Genome Mapping Project. Genome News. Number 15. September 1993. ● Report: National Research Council. DNA Technology in forensic Science. April 16, 1992. ● Correspondence between Cook-Deegan to Reid Adler. Chapter drafts. September 8, 1992. ● Article: Christopher Anderson. “Conflict of interest revisited.” Nature, Vol 355. February 27, 1992. ○ Article: Peter Aldhous and David Swinbanks. “’Big Three’ test the waters.” Nature, Vol 355. February 27, 1992. ● Memo from Cook-Deegan to Mike Knapp. cDNA patenting; Watson under pressure. March 26, 1992. ● News: Iowa State Uni. The Ag Bioethics Forum. August 1991. ● Article: Shauna S. Roberts. “How strictly will Roche Enforces Its Taq Sequencing Patent.” The Journal of NIH Research, Vol 4. June 1992. ● Article: Leslie Roberts. “The Perils of Involving Congress in a ‘Catfight.’” Leslie Roberts. Science, Vol 257. July 10, 1992. ● Report: C.R. Cantor, A. Mirzabekov, and E. Southern. “Report on the Sequencing by Hybridization Workshop.” Genomics, Vol 13. 1992. ● Opinion: Genetics and the public interest. Nature, Vol 356. April 2, 1992. ● Commentary: Michael S. Waterman. Genomic Sequence Databases. Genomics, Vol 6. 1990. ○ Article: Temple F. Smith. “The History of the Genetic Sequence Databases.” Genomics, Vol 6. 1990. ● Article: Leslie Roberts. “NIH Gene Patents, Round Two.” Science, Vol 255. February 21, 1992. ● Report: John R. Lawton, Frances A. Martinez and Christian Burks. Overview of the LiMB Database. ● Communication: Fundacion BBV. International Workshop on Human Genome Proyect: Legal Aspects. May 1993. ○ Article: Europe Press. “Las patentes geneticas plantean problemas eticos y de humanidad.” El Correo Gallego. May 28, 1993. ○ Article: UNESCO. “The Human Genome: How far should we go?” UNESCOPRESSE, Vol 3 No 11. May 14, 1993. ○ Letter from Jose Angel Sanchez Asiain to Cook-Deegan. ● Article: R.C. Lewontin. “The Dream of the Human Genome.” New York Review. May 28, 1992. ● Article: Elof Axel Carlson. “Defining the Gene: An Evolving Concept.” American Journal of Human Genetics, Vol 49. 1991. ● Report: Christian Burks. The Flow of Nucleotide Sequence Data into Data Banks: Role and Impact of Large-Scale Sequencing Projects. ● Article: “Databasing DNA: Can Science Meet the Challenge?” Computers in Science, Vol 1 No 1. 1987. ● Article: Susan Watts. “Making sense of the genome’s secrets.” New Scientist. August 4, 1990. Cook-Deegan Box 2/9
Folder 1 ● Memo from Cook-Deegan to Jack Gibbons, Roger Herdman and Robyn Nishimi. (August 14, 1992). Final two chapters of Cook-Deegan’s Book. ● Notes taken on a piece of paper. ● Memo from Lisa Raines to Cook-Deegan. IBA ○ Memo from Gerald J. Mossinghoff to Cook-Deegan. Human Gene Patent. ● Letter from Cook-Deegan to Bernadine Healy. (August 23, 1992). Requesting interview. ○ Letter from Cook-Deegan to Bernadine Healy. (June 27, 1992). Requesting interview. ○ Letter from Cook-Deegan to Tom Harkin. Requesting interview ○ Letter from Cook-Deegan to William Natcher. Requesting interview ● Article: “Genetic Testing Related to the Workplace explored in ERI symposium.” Eleanor Roosevelt Institute Investigator. (August 1992). ● Article: Cold Spring Harbor Laboratory. (1992). “Better Living through Biology.” Harbor Transcript. ● Memo from Cook-Deegan to Ken Shine, Queta Bond, Jack Barchas, Jane Fullarton, and Gary Ellis. (August 14, 1992). Final Chapters of genome book. Article: Graeme Browning. (July 11, 1992). “Peace Orphans?” National Journal. ● Subfolder (1.2) ○ Memo from Cook-Deegan to Bruce Alberts, Francisco Ayala and John Burris. (March 9, 1991). “Academy” Chapter draft. ○ Memo from Cook-Deegan to Kenichi Matsubara, Akiyoshi Wada, Michio Oishi, Asao Fujiyama, Akihiko Mine, Susan Clymer and David Swinbanks. (March 9, 1991). Japan chapter draft. ○ Memo from Cook-Deegan to Walter Gilbert. Gilbert chapter draft. ○ Memo from Cook-Deegan to Betty Civardi and Renato Dulbecco. (March 11, 1991). Dulbecco article. ○ Report: Committee on Government Operations. (April 2, 1992). “Designing Genetic Information policy: the need for an independent policy review of the ethical, legal, and social implications of the Human Genome Project.” Not in Folder ● News: UK Human Genome Mapping Project. (1991). Genome News. Number 8. ● Report: US Department of HHS and Department of Energy. Understanding Our Genetic Inheritance The US Human Genome Project: The First Five Years FY 1991-1995. ● Report: National Center for Human Genome Research. (March 1992). Genome Report Card. Folder 2 ● Memo from Cook-Deegan to Jim Watson. Chapter draft. March 21, 1991. ● Draft for Chapter 2: Mapping our genes ● Memo from Cook-Deegan to Kenichi Matsubara, Akiyoshi Wada, Michio Oishi, Asao Fujiyama, Akihiko Mine, Susan Clymer and David Swinbanks. (March 9, 1991). Japan chapter draft. ● Memo from Cook-Deegan to Lloyd Smith. Marvelous Machines draft. Cook-Deegan Box 2/9
● Memo from Cook-Deegan to Leroy Hood, Henry Huang, Lloyd Smith, Michael Hunkapiller and Tim Hunkpiller. (March 31, 1991). Automation section of “sequences” chapter. ● Memo from Cook-Deegan to Ken Shine, Queta Bond, Jack Barchas, Jane Fullarton, and Gary Ellis. (August 14, 1992). Final Chapters of genome book. ● Memo from Cook-Deegan to Bruce Alberts. (March 23, 1991). New paragraph in genome book. Sub Folder (2.2) ○ Article: David Dickson. (February 4, 1993). “Britain plans broad strategy on genome, approves therapy.” Nature, Vol 361. ○ Article: David Dickson and Alison Abbott. (February 4, 1993). “Cambridge and Heidelberg compete for new European gene database.” Nature, Vol 361. ○ News: UK Human Genome Mapping Project. (December 1992). Genome News. Number 12. ● Sub Folder (2.3) ○ Memo from Cook-Deegan to Leroy Hood. (September 2, 1991). Sequencing chapter information. ○ Opinion Article: “Gene patients.” Nature, VOL 359. (October 1, 1992). ○ Article: Malcolm Gladwell. “Clarifying Patent Law for Genes.” Washington Post. ○ Article: “NIH loses bid for patents on bits of human genes.” ○ Article: Michael Waldholz and Hilary Stout. (April 17, 1992). “A New Debate Rages Over the Patenting of Gene Discoveries.” The Wall Street Journal. ○ Article: Hilary Stout. (September 23, 1992). “Gene-fragment Patent Request is Turned Down.” The Wall Street Journal. ○ Article: Leslie Roberts. (September 25, 1992). “Rumors Fly Over Rejection of NIH Claim.” Science, Vol 257. ○ Article: Diane Gershon. (September 17, 1992). “Transfer of technology is booming business as NIH asks companies to help themselves.” Nature, Vol 359. ○ Article: Traci Watson. (September 24, 1992). “NIH cDNA patent rejected; backers want to amend law.” Nature, Vol 359. ○ Article: Christopher Anderson. (October 8, 1992). “Gene wars escalate as US official battles NIH over pursuit of patent.” Nature, Vol 359. ○ Memo from Chris to Cook-Deegan. ○ Invitation from National Center for Human Genome Research. The Human Genome Lecture Series. ○ Memo from Cook-Deegan to Lee Hood and Mike Hunkapiller. (July 18, 1991). Section of chapter on DNA sequencing that deals with DNA sequenators. ○ Letter from Frederic Burke to Bernardine Healy. (February 25, 1992). ○ Letter from Vida Beaven to Cook-Deegan. (October 8, 1992). ○ Letter from Ned Israelsen to James Height. (September 9, 1992). Application of J. Craig Venter: First Office Action US Application.
Cook-Deegan Box 2/9
Folder 3 ● Email from [email protected] to Cook-Deegan. Jobs in Santa Fe. ● Memo from Cook-Deegan to Genome mavens. (Feburuary 8, 1993). Chronology of the first five years of the genome project. ● Articles: US Department of Health and Human Services, Public Health Service and National Institutes of Health. The Human Genome Project: New Tools for Tomorrow’s Health Research. ● Letter from David Challoner to Cook-Deegan. (January 22, 1993). ● Journal: Federation of American Societies for Experimental Biology. (January 1991). The FASEB Journal, Vol 5, No 1. ● Letter and Replies: ○ Letter from David Challoner to Cook-Deegan. (January 26, 1993). ○ Memo from cook-Deegan to Davis Challoner. (February 7, 1993). Windom’s letters. ● Memo from Cook-Deegan to G.L. Schiebler. Robert Windom’s letters to William Clinton and Donna Shalala. Not In Folder ● Report: US Department of Energy, Office of Energy Research and Office of Health and Environmental Research. (June 1992). Human Genome: 1991-92 Program Report. ● Report: US Department of Energy and Office of Energy Research. (May 1992). Bibliography: Ethical Legal & Social Implications of the Human Genome Project. ● Schedule for Conference on Biotechonolgy and Diagnosis of Genetic Disease: an Assessment Forum on the Societal, Technical and Regulatory Issues, hosted by GU Department of Community and Family Medicine. ● Schedule for Legal and Ethical Issues raised by the Human Genome Project, hosted by The Health Las and Policy Institute of the University of Houston. Blue Folder ● Memo from Susann Wilkinson and Sy Perry to Moderators & Planning Committee Members. Review of Conference report draft. ● Letter from Seymour Perry to Cook-Deegan. (July 31, 1990). Planning Meeting for conference on biotechnology for the diagnosis of genetic disease. ● Report: minutes of planning committee meeting. August 17, 1990. ● Memo from Seymour Perry and Susann Wilkinson to members of Planning Committee of Conference on Biotechnology for the Diagnosis of Genetic Disease. Meeting minutes and revised agenda. ● Agenda for Planning Committee for Conference on Biotechnology for the Diagnosis of Genetic Disease. Folder 4 ● Notes from Hilton Head Conference. ● Memo from Susan Wallace to Cook-Deegan. (February 14, 1991). Reimbursement from Hilton Head Confence. ● Memo from Cook-Deegan to Susan Wallace. (February 18, 1991). Receipts for Hilton Head. Cook-Deegan Box 3/9
Folder 1 (Docs for June Genome Meeting) ● Report: Workshop on International Cooperation for the Human Genome Project: Valencia Declaration on the Human Genome Project. Revisions, copies and originals. ● Memo from Cook-Deegan to Tocchini-Valentini. (March 22, 1991).1988 Rome Conference Report. ● Letters and Reply: ○ From Emauele Mannarino to Alexander M . Capron. (October 20, 1988). ○ From Alexander M . Capron to Emauele Mannarino. (October 13, 1988). Hastings Center Report (Attached). ● Memo from Eileen to Cook-Deegan. (March 15, 1991). Code of Ethics for scientists ‘ ● Letter from R.J. Berry to Amy Crumpton. (May 4, 1990). Code of Environmental Practice. ● Article: Westminster Institute for Ethics and Human Values. (1989). “Ethics and the Environmental: Report on International Conference.” Westminster Affairs, Vol 2 No 3. ● Report: Coalition for Environmentally Responsible Economies. (September 7, 1989). Valdez Principles. ● Article: Barnaby J. Feder. (September 10, 1989). “Who will Subscribe to the Valdez Principles?” The New York Times. ● Guide: Hippocratic Oath for Scientist, Engineers, and Technologist ○ Article: “Scientist Urged to Sign Ethics Oath.” ○ Article: (October 21, 1987). “An oath for scientists.” The Guardian. ● Article: (June 1990). “Scientists appeal to world religious community.” FAS Public Interest Report. ● Article: Barnaby J. Feder. (September 1989). “Group Sets Corporate Code on Environmental Conduct.” New York Times. ● Letter from Technion-Israel Institute of Technology to those who the power to influence decision or the right to be consulted about them. The Mount Carmel Declaration on Technology and Moral Responsibility. ● Article: Federation of American Scientists. (May 1988). “The Buenos Aires Oath: a Hippocratic Oath for Scientist.” FAS Public Interest Report. ● Letters and Reply: ○ From Emauele Mannarino to Alexander M . Capron. (October 20, 1988). ○ From Alexander M . Capron to Emauele Mannarino. (October 13, 1988). Hastings Center Report (Attached). ● Memo from Cook-Deegan to Jim Watson, Paul Berg, Kenichi Matsubara and Andrei Mirzabekov. Attached draft statement. ● Article: Eliot Marshall. (May 25, 1990). “Data Sharing: a Delining Ethic?” Science, Vol 248. ○ Leslie Roberts. (May 25, 1990). “Genome Project: AN Experiment in Sharing” Science, Vol 248. ○ Eliot Marshall. (May 25, 1990). “Agencies, Journal Set Some Rules?” Science, Vol 248. ○ Eliot Marshall. (May 25, 1990). “Geneva on the Beltway.” Science, Vol 248. ○ Leslie Roberts. (May 25, 1990). “The Great Clone Giveaway.” Science, Vol 248. ● Report: International Conference on Bioethics: The human genome sequencing: ethical issues. April 10-15, 1988. ● Memo from Václav Pačes to Cook-Deegan. Statement for the session to creating and sharing information in human genome. ● Letter from J.K.M. Gevers to Daniel Wikler. Provisional comments and tentative recommendation concerning issues of “Multinational corporations: insureds and employees.” Cook-Deegan Box 3/9
Folder 2 (Financing and Related) ● Memo from Susann Wilkinson and Seymour Perry to all conference [Conference on Biotechnology and the Diagnosis of Genetic Disease: Forum on the Technical, Regulatory and Societal Issues] participants. Conference update, presentation summaries, making travel plans. ● Memo from Susann Wilkinson to members of the planning committee. Finalization of agenda, funds, promotion. ● Report: List of confirmed speakers and moderators. (December 20, 1990). ● Memo from Susann Wilkinson and Seymour Perry to planning committee members ● Report: Revised tentative agenda. (October 9, 1990). ● Report: Policy issues and key questions. ● Report: Revised tentative agenda. (September 25, 1990). ● Letter from Cook-Deegan to Albert Gore. (September 26, 1990). Conference proposal. ● Memo from Susann Wilkinson and Seymour Perry to planning committee members. September 25, 1990. Next meeting: 10/5/90 ● Report: Revised tentative agenda. (September 26, 1990). ● Letter from Susann Willkinson to Cook-Deegan. ● Report: Agenda for Conference on Biotechnology for the Diagnosis of Genetic Disease.
Folder 3 ● Report: minutes on the NIH-DOE working Group on Ethical, Legal and Social Issues Related to Mapping and Sequencing The Human Genome. (February 6, 1990). ● Report: Ned Block. (draft of December 10, 1994). Conceptual Confusion in the Debate about The Bell Curve. ● Article: Charles Murray. (December 2, 1994). “The Real ‘Bell Curve.’” Wall Street Journal. ● Memo from Jon Beckwith to Cook-Deegan. ● Article: Adolph Reed Jr. (November 28, 1994). “Looking Backward.” The Nation. ● Article: Kevin Merida. (December 10, 1994). “New Heritage Emerges in Orientation.” The Washington Post. ● Article: Alzheimer’s Disease. Washington Highlights. ● Notes: Possible topics for solicited papers and research proposals on human behavior genetics. ● Report: F. Vogel and A.G. Motulsky. (1979). Human Genetics: Problems and Approaches. ● Article: Mary-Claire King, Sarah Rowell and Susan M Love. (April 21, 1993). “Inherited Breast and Ovarian Cancer.” JAMA, Vol 269 No 15. ● Article: Dennis L. Breo. (April 21, 1993). “Altered fates-Counseling families with inherited breast cancer.” JAMA, Vol 269 No 15.
Cook-Deegan Box 3/9
Folder 4 (Hilton Head Meeting) ● Letter from Cook-Deegan to Susan Wallace. Summary of Meetings (DNA Sequencing Conference II & The Human Genome And the Pharmaceutical Industry). ● Memo from Cook-Deegan to J. Craig Venter, Walter Gilbert and Mark Pearson. Hilton Head summaries. ● Letter from J. Craig Venter to Cook-Deegan. ● Report: Agenda for Genome Project and Pharmaceutical industry ● Letter from Jack B. McConnell to Honorable Thad Cochran. ● Report: Proposed schedule for the Genome Project and The Pharmaceutical Industry. ● Letter from Susan Wallace to Cook-Deegan. ● Report: Preliminary agenda for Genome Sequencing Conference II. ● Article: Leslie Roberts. (September 28, 1990). “Genome Center Grants Chosen.” Science. ● Report: Speaker Abstract for Genome Sequencing Conference II. ● Notes on Genome Sequencing Conference II. ● Notes taken by John Mulligan on Genome Sequencing Conference II.
Folder 5 ● Letter from Hessel Bouma to Cook-Deegan. ● Guide: Genetics, Religion and Ethics Conference: Implications of the Human Genome Project for Medicine, Theology, Ethics and Policy. ● Report: The Boston Working Group of the National Conference on Genetics, Religion and Ethics. (Draft: January 24, 1992). The Human Genome Project and Prenatal Diagnosis. ● Report: The Chicago Working Group of the National Conference on Genetics, Religion and Ethics. (Draft: January 23, 1992). The Human Genome Project: Issues for the Religious Communities. ● Report: C. Thomas Caskey and Holly A. Hammond. (March 13-15). Case II-B DNA Fingerprinting In Utero. ● Letter from Hessel Bouma III to Cook-Deegan. ○ Attached: Summary Reflection Statement. (June 1, 1992). ● News: The Institute of Religion. (1992). New Horizons. ● Letter from Hessel Bouma to Cook-Deegan. ● Report (Questions): Religious/ Theological Attitudes Toward Genetic Intervention and Alteration of Life-Form. ● Memo from Frank D. Seydel to Ruth Bulger, Audrey Chapman, Bob Cook- Deegan, Abigall Evans, Barry Freundel, Jane Fullerton and David Wasserman. Breakfast meeting with Bob Nelson. ● Memo from Frank Seydel to Bob Nelson. (October 18, 1991). Deadline for Report & Details regarding March, 1992 Houston Conference. ● Letter from Elaine Lawson to Frank Seydel. ● Memo from Frank Seydel to Bob Nelson. (October 18, 1991). Deadline for Report & Details regarding March, 1992 Houston Conference. ● Letter from J. Robert Nelson to Cook-Deegan. (October 16, 1991). Cook-Deegan Box 3/9
● Report (Questions): Religious/ Theological Attitudes Toward Genetic Intervention and Alteration of Life-Form. ● Letter from Ed Payne to Elaine Lawson. (September 3, 1991). Attached: Payne’s Book Making Biblical Decisions. ● Journal: (January 1991). Christian Social Action, Vol 4 No 1. ● Report: Agenda for Washington Working Groups for Implications of the Human Genome Project for Behavioral Genetics, Religion and Ethics. ● Report: J. Bachman. (April 2, 1991). Proposed Plan for developing the Chicago Working Group Position Paper. ● Memo from Cook-Deegan to Frank Seydel. Names promised to send [Washington Working Group Committee members]. ● Report: Group 2: Impact of Genetics on Key Theological Questions and Impact of Theology on Genetics. (August 13, 1991). ● Report: Committee Members of Washington Area Working Group on Implications of the Human Genome Project for Behavioral Genetics, Religion and Ethics. ● Report: Vignettes for Washington Area Working Group, Subgroup 3. (September 17, 1991). ● Report (Questions): Religious/ Theological Attitudes Toward Genetic Intervention and Alteration of Life-Form. ● Memo from Frank Seydel to Washington Area Study Group on Religion and Genetics (WASHRAG) members. October 12, 1991. October meeting.
Blue Folder (Biotechnology and the Diagnosis of Genetic Disease: Forum on the Technical, Regulatory and Societal Issues. ● Left Sleeve ○ Report (Abstract): John A. Phillips III. Clinical Impact of Biotechnology. ○ News: National Center for Human Genome Research. (March 1991). Human Genome News, Vol 2, No 6. ● Right Sleeve ○ Report (Fact sheet): National Center for Human Genome Research. (February 1991). Human Gnome Project Progress. ○ Report: National Center for Human Genome Research. The Human Genome Project: New Tools for Tomorrow’s Health Research. ○ Notes from the conference ○ Report: (Draft: April 19, 1991). Panel II- Quality Assurance: Overview on Clincal and scientific issues in achieving technically reliable results. ○ Guide: Agenda for Conference on Biotechnology and the Diagnosis of Genetic Disease: Forum on the Technical, Regulatory and Societal Issues. ■ Notes from the conference. ○ Report: Kishor Bhatia. Background Paper: The Application of Biotechnology for the Diagnosis of Genetic Disease. ○ Report (Issues to discuss): Biotechnology and the Diagnosis of Genetic Disease: Forum on the Technical, Regulatory and Societal Issues. ○ Memo from Susann Wilkinson and Sy Perry to Conference Moderators. (April 17, 1991). Preparing Conference Report. Cook-Deegan Box 3/9
Not in Folder ● Memo from Susann Wilkinson and Sy Perry to Conference Moderators. Preparing Conference Report. (Draft: Abstract)
Folder 6 (McGraw-Hill Yearbook of Science and Technology) ● Article: R.M.Cook-Deegan, J.D. Watson and Sloan R. Williams. “Human Genetics.” McGraw-Hill Yearbook of Science and Technology. ● Letter from Sybil P. Parker to Cook-Deegan. (February 8, 1991). Human Genetics article. ● Letter from Sybil P. Parker to Cook-Deegan. (August 30, 1990). McGraw-Hill Yearbook of Science and Technology. ● Report: James Dewy Watson and Cook-Deegan. (Draft: August 24, 1990). The Human Genome Project. ● Letter from Sybil P. Parker to Cook-Deegan. (May 21, 1991). Human Genetics article. ● Letter from Cook-Deegan to Sybil P. Parker. Manuscript. (August 15, 1990). ● Memo from Cook-Deegan to Jim Watson and Leslie Fink. Disposition of final manuscript. (August 14, 1990). ● Memo from Cook-Deegan to Elke Jordan, Leslie Fink, Eric Juengst and James Watson. (July 12, 1990). ● Memo from Leslie Fink to Cook-Deegan. Edits in manuscript. ● Memo from Cook-Deegan to Elke Jordan, Leslie Fink, Eric Juengst and James Watson. (July 12, 1990). Status of manuscript. ● Report: James Dewy Watson and Cook-Deegan. (Draft: July 10, 1990). The Human Genome Project. ● Letter from Sybil P. Parker to Cook-Deegan. (August 9, 1990). Reminder of due date for submission of Human Genetics article. ● Letter from Cook-Deegan to Sybil P. Parker. Response to article request. (April 23, 1990). ● Letter from Cook-Deegan to Sybil P. Parker. Signed assignment form. (September 4, 1990). ● Letter from Sybil P. Parker to Cook-Deegan. (September 4, 1990). Signed assignment form. ● Letter from Sybil P. Parker to Cook-Deegan. (November 2, 1990). Article revision. ● Letter from Cook-Deegan to Ginger Berman. (January 4, 1991).
Cook-Deegan Box 3/9
Folder 7 (CIOMS mtg, Tokyo/ Inuyama July 1990). ● Report: Cook-Deegan. (May 1990). Public Policy Implications of the Human Genome Project. ● Letter from Zbigniew Bankowski to Cook-Deegan. (August 28, 1990). ● Program from XXIV CIOMS Round Table Conference ● Report: The Declaration of Inuyama, July 27, 1990. XXIV CIOMS Roundtable Conference Genetics, Ethics, and Human Values: Human Genome Mapping, Genetic Screening and Therapy. ● Report: Preliminary List of Participants [CIOMS Conference). ● Report: Report of Discussions from Working Group on Human Genome Mapping. (July 24 & 26 1990). ● Report: Report of Discussions from Working Group on Genetic Screening and Testing. (July 24 & 26 1990). ● Report: Report of Discussions from Working Group on Human Gene Therapy. (July 24 & 26 1990). ● Notes from Conference ● News: WHO. (July 20, 1990). “Tokyo Conference on Genetics and Ethics.” WHO Press, 36. ● Book subscription order form: Summary Volume and Genetic Screening: From Newborn to DNA Typing. ● Report: Report of Discussions from Working Group on Human Gene Therapy. (Final: July 24 & 26 1990). ● Report: Robertson Parkman and Donald B. Kohn. “Gene Therapy for Inborn Errors of Metabolism.” ● Guide: Suggested Guidelines for Moderators and Rapporteurs. ● Guide: Suggested Guidelines for Moderators and Rapporteurs. ● Notes from Conference ● Report: Report of Discussions from Working Group on Human Genome Mapping. (July 24 & 26 1990). ● Report: Report of Discussions from Working Group on Genetic Screening and Testing. (July 24 & 26 1990). ● Report: Report of Discussions from Working Group on Human Gene Therapy. (July 24 & 26 1990). ● Report: Report of Discussions from Working Group on Genetic Screening and Testing. (July 24 & 26 1990). Cook-Deegan Box 4/9
Folder 1 (USSR/ US Bioethics Conference) ● Letter from Daniel Wikler to Gina Kolata. (May 24, 1991). ● Letter from Daniel Wikler to Larry Thompson. (May 24, 1991). ● Letter from Daniel Wikler to Chris Anderson. (May 24, 1991). ● Letter from Daniel Wikler to Leslie Roberts. (May 24, 1991). ● Memo from Cook-Deegan to Dan Wikler, Alex Capron and Eileen Palmer. (June 6, 1991). Attached draft meeting summary. ● Report: Meeting Summary from Human Genome Research in an Interdependent World. ● Memo from Cook-Deegan to Dan Wikler and Eileen Palmer. (May 19, 1991). Attached revised statement for information flow session; other information. ● Red SubFolder 1.1 (Moscow Planning meeting 10/15-10/16/1990) ○ Letter from Kenichi Matsubara to Cook-Deegan. ○ Memo from Betty Civardi to Cook-Deegan. (May 28, 1991). Genome Ethics Meeting June 2-4. ○ Letter from Daniel Wikler to Boris Yudin. (November 29, 1990). ○ Letter from Boris Yudin to Daniel Wikler. (November 15, 1990). ○ Letter from Boris Yudin to Daniel Wikler. (November 15, 1990). ○ Letter from Eileen Palmer to Cook-Deegan. (November 5, 1990). ○ Letter from Aso Fujiyama to Cook-Deean. (October 29/1990). ○ Letter from Daniel Wikler to Cook-Deegan. (October 25, 1990). ○ Memo from Cook-Deegan to Dan Wikler. (October 25, 1990). Moscow follow-up. ○ Letter from Daniel Wikler to Eric Juengst. (October 25, 1990). ○ Letter from Daniel Wikler to Jonathan Glover. (October 25, 1990). ○ Memo from Cook-Deegan to Dan Wikler and Eileen Palmer. (October 19, 1990). Invitation List. ○ Memo from Cook-Deegan to Dan Wikler and Eileen Palmer. November 6, 1990). Yesterday’s fax ○ Report: Itemization of Calls. US Sprint. ○ Email from Polly Harrison to Boris Yudin. ● Letter from Alexander M. Capron to Nancy Wexler. (December 31, 1991). ● Article (2 copies): Alexander Morgan Capron. “Human Genome Research in an Interdependent World. ● Email form Dan Wikler to Cook-Deegan. ● Memo from Cook-Deegan to Asao Fujiyama. (August 30, 1991). Genome centers to visit; international ethics group. ● Fax from Asao Fujiyama to Cook-Deegan. ● Letter from Dan Wikler to Eric Juengst. (August 22, 1991). ● Fax from Cook-Deegan to Eileen Palmer and Dan Wikler. Asao Fujiyama’s comments. ● Letter from Dan Wikler to Alexander M. Capron. (July 10, 1991). ● Fax from Cook-Deegan to Chris Joyce. Meeting summary draft. ● Memo from Cook-Deegan to Dan Wikler, Eileen Palmer and Alex Capron. (July 9, 1991). June meeting aftermath. ● Fax from Lev L. Kisselev to Daniel Wikler. (July 24, 1991). Cook-Deegan Box 4/9
● Memo from Cook-Deegan to Dan Wikler. (July 12, 1991). Wyngaarden correspondence. ● Memo from Cook-Deegan to Luca Cavalli-Sforza. (July 12, 1991). Your fax of earlier this evening. ● Letter from Dan Wikler to Cook-Deegan. (July 15, 1990). ● Letter from Maxine F. Singer to Alexander M. Capron. ● Memo from Cook-Deegan to Daniel Wikler. (July 12, 1991). Wyngaarden correspondence. ● Letter from Daniel Wikler to cook-Deegan. ● Letter from Jonathan Glover to Cook-Deegan. ● Letter from Cook-Deegan to Paul Billings. ( June 13, 1991). ○ Letter from Paul Billings to Cook-Deegan (June 5, 1991). ○ Report: Paul R. Billings. (To be delivered on June 4, 1991 for “Human Genome Research in the Interdependent World: A Conference on International Aspects of Ethical and Social Issues in Human Genome Research.” “Comments on Politics and Genetics: Ethnicity and Race.” ● Email from Daniel Wikler to Cook-Deegan. ● Letter from Eileen Palmer to Cook-Deegan. (May 15, 1991). ● Letter from Daniel Wikler to Ray Zillinskas. (April 8, 1991). ● Program (Draft as of April 16, 1991) for Human Genome Research in an Interdependent World. ● Email from Michael Yesley to Cook-Deegan. ● Memo from Cook-Deegan to Eileen Palmer and Daniel Wikler. (March 14, 1991). This morning’s messages. ● Fax from Chee Heng Leng to Cook-Deegan. (March 12, 1991). ● Letter from Daniel Wikler to Eris Juengst. (March 5, 1991). ● Fax from Cook-Deegan to Chee Heng Leng. ● Email from Daniel Wikler to Cook-Deegan. ● Email from Daniel Wikler to Cook-Deegan. ● Email from Diane Paul to Cook-Deegan. ● Email from Daniel Wikler to Cook-Deegan. ● Email from Daniel Wikler to Dan. ● Memo from Cook-Deegan to Jonathan Glover. (January 21, 1991). Right to informational self-determination. ● Letter from Daniel Wikler to Eric Juengst. ● Report: Invitation List for Human Genome Research in an Interdependent World. (December 1990). ● Memo from Cook-Deegan to Martinus F. Niermeijer. (December 13, 1990). Biological Warfare topic for June meeting. ● Memo from Cook-Deegan to Walter Bodmer and Nancy Wexler. (December 7, 1990). Biological Warfare topic on June conference docket. ● Letter from M.F.Niermeijer to Daniel Wikler. (December 13, 1990). Human Genome Research in an interdependent World conference ● Memo from Cook-Deegan to Daniel Wikler. (December 12, 1990). First session at June meeting. ● Letter from Daniel Wikler to Cook-Deegan. (December 11, 1990). Cook-Deegan Box 4/9
● Memo from Cook-Deegan to Walter Bodmer and Nancy Wexler. (December 7, 1990). Biological warfare topic on June conference docket. ● Report: Daniel Wikler. Part I:Creating and sharing information in Human Genome Research. ● Agenda for Human Genome Research in an Interdependent World: Ethical, Legal and Social Issues. ● Invitation Lists ● Letter from M.F.Niermeijer to Jonathan Glover. (October 11, 1990). Suggestions for Moscow meeting. ● Memo from Valentina Tsitovicj to Cook-Deegan. (October 5, 1990). Moscow Planning meeting. ● Leeter from Wataru Mori to Cook-Deegan. September 26, 1990. ● Memo from Cook-Deegan to Valentina Tsitovish. (October 5, 1990). Moscow Planning meeting. ● Letter from Kenichi Matsubara to Cook-Deegan. (October 1, 1990). Moscow program planning meeting. ● Fax from Kenichi Matsubara to Cook-Deegan. (October 2, 1990). ● Memo from Cook-Deegan to Dan Wikler. (September 27, 1990). Gros address, phone. ● Memo from from Cook-Deegan to Dan Wikler. (September 26, 1990). Modell data, comments. ● Memo from Cook-Deegan to Eileen Palmer. (September 26, 1990). Mori. ● Letter from Wataru Mari to Cook-Deegan. (September 26, 1990). ● Memo from Cook-Deegan to Kenichi Matsubara. (September 26, 1990). Moscow program planning meeting October 15-17. ● Memo from Cook-Deegan to Wataru Mori. (September 19, 1990). Moscow planning meeting, October 15-16 or 16-17. ● Memo from Cook-Deegan to Eileen Palmer. (September 24, 1990). Mori invitation followup; speaker list. ● Memo from Cook-Deegan to Ken-ichi Matsubara. (September 24, 1990). Mori invitation to international genome meeting. ● Memo from Cook-Deegan to Dan Wikler and Eileen Palmer. (September 23, 1990). Moscow trip. ● Faxed letter from Daniel Wikler to Cook-Deegan. (September 21, 1990). ● Memo from Cook-Deegan to Dan Wikler. (September 21, 1990). Moscow planning meeting. ● Report: Summary Statement, investigated by Daniel Wikler. ● Memo from Cook-Deegan to Dan Wikler. (September 19, 1990). Today’s news. ● Memo from Cook-Deegan to Bernadette Modell. (September 19, 1990). WHO report. ● Memo from Cook-Deegan to M.F. Niermeijer. (September 19, 1990). Moscow planning meeting, October 15-16 or 16-17. ● Memo from Cook-Deegan to Wataru Mori. (September 19, 1990). Moscow planning meeting, October 15-16 or 16-17. ● Memo from Cook-Deegan to Victor McKusick. (September 19, 1990). Moscow planning meeting, October 15-16 or 16-17. Cook-Deegan Box 4/9
● Faxed correspondence ○ From Daniel Wikler to Cook-Deegan. (May 29, 1990). ○ From Daniel Wikler to Erin Juengst. (May 30, 1990). ○ From Daniel Wikler to Cook-Deegan. (June 1, 1990). ● Memo from Cook-Deegan to Dan Wikler. (September 9, 1990). AAAS symposium. ● Letter from Cook-Deegan to Wataru Mori. (August 12, 1990). ● Faxed letter from Daniel Wikler to Cook-Deegan. (August 10, 1990). ● Faxed letter from Daniel Wikler to Cook-Deegan. (June 26, 1990). ● Faxed letter from Eileen Palmer to Cook-Deegan. (July 2, 1990). ○ Faxed letter from Dan Wikler to Victor A. McKusick. (July 2, 1990). ● Faxed letter from Daniel Wikler to Cook-Deegan. (June 1, 1990). ● Memo from Cook-Deegan to Dan Wikler. (June 28, 1990). Today’s dollop. ● Faxed letter from Daniel Wikler to Cook-Deegan. (June 26, 1990). ● Memo from Cook-Deegan to Dan Wikler. (June 27, 1990). Today’s news @ 3 p.m. ● Memo from Cook-Deegan to Dan Wikler. (June 26, 1990). Today’s four tasks. ● Faxed letter from Daniel Wikler to Cook-Deegan. (June 25, 1990). ○ Attached: letter from Sheldon Krimsky to David Wikler. ● Letter from Eileen Palmer to Cook-Deegan. (September 24, 1990). ● Faxed letter from Eric Juengst to Cook-Deegan. ● Memo from Cook-Deegan to Dan Wikler. (June 6, 1990). USSR bioethics conference. ● Faxed letter from Daniel Wikler to Andrei Mirabekov. (June 18, 1990). ● Faxed letter from Daniel Wikler to Cook-Deegan. (June 18, 1990). ● Faxed letter from Daniel Wikler to Boris Yudin. (June 18, 1990). ● Memo from Cook-Deegan to Dan Wikler. (June 19, 1990). ● Faxed letter from Daniel Wikler to Cook-Deegan. (June 1, 1990). ● Faxed letter from Daniel Wikler to Cook-Deegan. (June 21, 1990). ● Faxed letter from Daniel Wikler to Cook-Deegan. (May 25, 1990). Confence topics. ● Faxed letter from Eileen Palmer to Cook-Deegan. (June 21, 1990). ● Faxed letter from Daniel Wikler to Cook-Deegan. (June 21, 1990). ● Memo from Cook-Deegan to Dan Wikler. (May 27, 1990). Your fax of yesterday. ● Memo from Cook-Deegan to Dan Wikler. (June 21, 1990). Your fax of a few years ago. ● Faxed letter from Daniel Wikler to Walter Bodmer. (November 21, 1990). ● Letter from Walter Bodmer to Daniel Wikler. (November 1, 1990). ● Report: Budget Proposal for the Conference. ● Letter from Daniel Wikler to Eric Juengst. (November 19, 1990). Report on the Moscow mtg of the Organizing Interdependent World. ● Email from Dan Wikler to Cook-Deegan. (February 17, 1991). Draft of schedule for the conference. ● Faxed letter from Eileen Palmer to Cook-Deegan. (January 9, 1991). ● Report: Invitation list for Conference ● Email from Cook-Deegan to Kenichi Matsubara. (February 6, 1991). Cook-Deegan Box 4/9
● Email from Dan Wikler to Cook-Deegan. (January 28, 1991). Invitation list ● Faxed letter from Dan Wikler to Cook-Deegan. (February 3, 1991). ● Memo from Cook-Deegan to Dan Wikler and Eileen Palmer. (April 6, 1991). June conference news. ● Memo from Cook-Deegan to Dan Wikler and Eileen Palmer. (April 6, 1991). A few more loose ends. ● Letter from Gray Handley to Cook-Deegan. (June 5, 1991). ● Email from Dan Wikler to Cook-Deegan. (May 28, 1991). Leslie Robert will cover conference. ● Email from Dan Wikler to Cook-Deegan. (May 29, 1991). Saturday night, Wednesday evening. ● Report: Jonathan Glover. “Political uses of genetics.”
FedEx Envelope ● Letter from Arthur Herschman to Cook-Deegan. (March 11, 1991). ● Guidelines for symposium, technical session, and workshop proposals for the 1992 AAAS Annual Meeting. ● Report (Outline): International Aspects of Ethical and Social Issues in Human Genome Research. (February 19, 1991). ● Notes and Participant Index cards ● Letter from Cook-Deegan to table speakers. (February 5, 1991). ● Memo from Cook-Deegan to Dotty Smith, AAAS. (September 27, 1990). Abstract for Wikler Session, 19 Feb 91. ● Letter from Thomas H. Murray to Cook-Deegan. (December 5, 1990). ● Memo from Cook-Deegan via Diane Hinton to James Wyngaarden. (September 7, 1990). AAAS symposium, February 19, 1991; 1:30-4:30. ● Memo from Cook-Deegan to Diane Hinton. (September 4, 1990). AAAS symposium, February 19, 1991. ● Letter from Mark S. Frankel to Daniel Wikler. (August 3, 1990). ● Letter from Dan Wikler to Cook-Deegan. ● Letter from Daniel Wikler to Mark S. Frankel. (August 31, 1990). ● Fax from Frantisek Kalousek to Cook-Deegan. (September 12, 1990). ● Memo from Cook-Deegan to Eileen Palmer. (July 17). AAAS connection. ● Memo from Cook-Deegan to Dotty Smith, AAAS meetings office. (October 7, 1990). Final program MS, symposium on “International Aspects of Ethical and Social Issues in Human Genome Research.” ● Memo from Michelle D. Games to Program Organizers. (October 1, 1990). Edited Final program manuscripts. ● Memo from Cook-Deegan to Dan Wikler. (September 17, 1990). Session on international aspects of social and ethical issues related to genome research. ● Letter from Elizabeth Zeutschel to Daniel Wikler. (July 1990). ● Schedule for AAAS Annual Meeting. ● Preliminary program for AAAS 91 Annual Meeting. ● Fax from Vaciav Paces to Cook-Deegan. (November 19, 1990). ● Information for session presiders pamphlet. Cook-Deegan Box 4/9
● Letter from Elisabeth Zeutschel and Rosita Johnson to Cook-Deegan. (November 1, 1990). ● Preliminary program for AAAS 91 Annual Meeting. ● Instructions and Samples for preparation of symposium manuscript. AAAS.
Folder 2 (Pink folder labeled Invitations to June meeting) ● Fax from Dan Wikler to Cook-Deegan. ○ Letter from Dan Wikler to Shohei Yonemoto. (March 11, 1991). ○ Program for Conference. ○ Agenda for Conference. ○ Invitation list ● Letter from Chan Chee Khoon to Cook-Deegan. (March 12, 1991). ● Fax from Cook-Deegan to Dan Wikler. Niermeijer’s comment. ○ Fax from M.F. Niermeijer to Cook-Deegan. ○ Faxed letter from Dan Wikler to Kenichi Matsubara. (April 29, 1991). ● Letter from Peter Herby to Cook-Deegan. (March 20, 1991). ● Letter from Cook0Deegan to Alberto Piazza. (February 13, 1991). ● Email from Cook-Deegan to Dan Wikler and Eileen Palmer. (March 15, 1991). Last of invitation inserts. ● Memo from Cook- Deegan to Dan Wikler and Eileen Palmer. (March 13, 1991). Today’s messages. ● Email from Dan Wikler to Cook-Deegan. (March 11, 1991). Invites ● Email from Dan Wikler to Cook-Deegan. (February 22, 1991). Mis-addressed revised agenda; wade through the opening nonsense. ● Letter from Chee Heng Leng to Cook-Deegan. (January 27, 1991). ● Email from Dan Wikler to Cook-Deegan. (March 2, 1991). Here is a model invitation, with text on the subject of the talk. ● Fax from François Gros to Cook-Deegan. (February 15, 1991). ● Letter from Erhard Geissler to Cook-Deegan. (January 15, 1991). ● Letter from Erhard Geissler to Cook-Deegan. (January 15, 1991). ● Letter from Cook-Deegan to Zbigniew Bankowski. (February 11, 1991). ● Letter from Cook-Deegan to Renato Dulbecco. (February 11, 1991). ● Letter from Cook-Deegan to Federico Mayor. (February 11, 1991). ● Letter from Cook-Deegan to François Gros. (February 11, 1991). ● Letter from Cook-Deegan to F. Gray Handley. (February 11, 1991). ● Letter from F. Gray Handley to Daniel Wikler. (July 10, 1991). ● Memo from Cook-Deegan to Daniel Wikler. (January 22, 1991). Update ● Memo from Cook-Deegan to Walter Bodmer. (January 18, 1991). June international meeting. ● Memo from Cook-Deeganto to Ray Zilinskas. (January 18, 1991). BW satellite for June 5). ● Memo from Cook-Deegan to Dan Wikler and Eileen Palmer. (January 4, 1991). Follow-up. ● Letter from Dorothy Nelkins to Dan Wikler. (December 6, 1990). ● Letter from Erhard Geissler to Cook-Deegan. (December 3, 1990). Cook-Deegan Box 4/9
● Memo from Cook- Deegan to Dan Wikler. (December 21, 1990). Recent development. ● Letter from James D. Watson to Cook-Deegan. (December 12, 1990). ● Letter from C. Thomas Caskey to Cook-Deegan. (December 10, 1990). ● Memo from Cook-Deegan to Eileen Palmer and Dan Wikler. (December 1, 1990). June meeting status. ● Memo from Cook-Deegan to Erhard Geissler. (December 1, 1990). Washington, DC Conference, June 2-4, 1991. ● Letter from Cook-Deegan to Walter F. Bodmer. (December 1, 1990). ● Letter from Cook-Deegan to James D. Watson. (December 1, 1990). ● Letter from Cook-Deegan to C. Thomas Caskey. (December 1, 1990). ● Letter from Cook-Deegan to Phillip Reilly. (December 1, 1990). ● Memo from Cook-Deegan to Dan Wikler. (December 13, 1990). Capron discussion; Geissler accepts; Faxed Bodmer memo to Niewmeijer. ● Faxed letter from Dan Wikler to Asao Fujiyama. ● Letter from Alberto Piazza to Dan Wikler. (February 20, 1991). ● Letter from Zbigniew Bankowski to Cook-Deegan. (March 15, 1991). ● Letter from F. Gray Handley to Cook-Mulligan. ● Letter from Robyn Y. Nishimi to Cook-Deegan. (April 3, 1991).
SubFolder 3 (Blue Folder labeled ELSI working group mtg 2/6-2/7/95 ● Document: Senate- Mitchell Bill. ● Memo from Nancy S. Wexler to Cook-Deegan. (January 3, 1995). Nominating Committee. ● Document: Draft meeting [meeting of the NIH-DOES joining working group on ethical, legal, and social implications of Human Genome Research] agenda ● Senate Committee lists. ● Document: Informed consent for genetic research on stored tissue samples. (Draft: December 13, 1994). ● Memo from Anne E. Rufo to NIH-DOE ELSI Working group members and liaisons. (January 19, 1995). Materials for the ELSI working group meeting- February 6-7, 1995. ● Document: NIH-DOE ELSI working group roster ● Article: (December 13, 1994). “Mainstream Science on Intelligence.” The Wall Street Journal. ● Article: Myron A. Hofer. (December 26, 1994). “Behind the Curve.” The New York Times. ● Article: (Nov 13, 1994). “New Laws to ban sex tests on foetuses.” ● Document: Final Meeting Agenda. ● Document: NIH-DOE ELSI working group roster ● Report: Summary of Meeting [Eighteenth meeting of the NIH-DOE Joint Working Group on Ethical, Legal, and Social implications of Human Genome Research] ● Document: New Statement 12-17-94 (Herrnstein’s and Murray’s The Bell Curve). ● Memo from Teresa Doksum to ELSI Working Group members. (February 7, 1995). Annotated Bibliography of Behavioral Genetics: Addendum. Cook-Deegan Box 4/9
● Document: ELSI Products by Grant. (Draft: August 12, 1994). ● Report (Graphs): Number of Applications [ELSI Applications through out fiscal years 90-94). ● Document: Citations by authors. ● Memo from Teresa Doksum to ELSI working group member. (February 2, 1995). Annotated Bibliography of Behavioral Genetics.
Blue folder ● Left side ○ Council of Europe. (May 21, 1991). The Work of the Council of Europe in the field of bioethics. ○ Letter from M.F. Niermeijer to Cook-Deegan. (May 1, 1991). ■ Article: Mark Frankel. A Draft Resolution on the Responsibilities of Scientists in the Global HGR Community. ■ Letter from Norio Fujiko. Scientist’s Responsibility. ○ Report: Declaration on the Rights of Individuals in Insurance and Employment. ○ Document: A. Resolution. Draft Resolution. ○ 4 pages of notes (can’t really read handwriting). ○ Article: Cook-Deegan. Integrating Social Analysis with Science. ○ 2 pages of notes ○ Letter from Dan Wikler to Cook-Deegan. (May 30, 1991). ○ Letter from Eileen Palmer to Cook-Deegan. (May 30, 1991). ○ Letter from Thomas H. Murray to Dan Wikler. (May 13, 1991). ■ Letter from J.K.M. Gevers to Dan Wikler. (May 8, 1991). ■ Document: Neil A. Holtzman. (Draft). Use of Genetic Tests by Insurers and Employers. ○ Report: Václav Pačes and Wayne Fenton. Participation of Small Countries in the Human Genome Project. ○ Fax from Alberto Piazza to Dan Wikler. (May 29, 1991). Genetics and Races. ● Right Side ○ Document: Compiled by Michael S. Yesley. Bibliography: Ethical. Legal and Social Implications of the Human Genome Projects. ○ Report: Council of Europe. (April 30, 1991). Ad hoc Committee of Experts on Bioethics (CAHBI) Final Activity Report. ○ Memo from Kathleen Stratton to Cook-Deegan. ○ Article: Cook-Deegan. Integrating Social Analysis with Science. ○ Report: Yoshio Tateno. Evolutionary Difference in Man. ○ Report: Paula Kokkonen. (July 4, 1991). Human Genome Research in an Interdependent World.
Cook-Deegan Box 4/9
Folder 4 (Labeled Montreal 10/16-18/94 ● Letter from Cook-Deegan to Beth A. Fine. (November 4, 1994). ● Report: Montreal NGSC trip expenses. ● Letter from Beth A. Fine, Virginia Corson, and Audrey Heimler to Cook-Deegan. (October 24, 1994). ● Letter from Beth A. Fine to Cook-Deegan. (April 28, 1994). Genetics, Bioethics, and Federal Public Policy presentation. ● Memo from Ginny Corson to Cook-Deegan. (September 21, 1994). Montreal meeting. ● Fax from Cook-Deegan to Ginny Corson. (September 12, 1994). Biographical sketch. ● Letter from National Society of Genetic Counselors, INC to Cook-Deegan. Confirmation letter for 13th Annual Educational Conference. ● Letter from Joy Kahn to Cook-Deegan. Statistics fomr ETHX. ● Memo from Cook-Deegan to Bea Leopold. (August 1, 1994). Abstract for October 18 talk; background readings. ● Memo from Lisa Amacker North to Cook-Deegan. ( May 23, 1994). Conference Program Book. ● Comment: Kathi E. Hanna, Robert M. Cook-Deegan, and Robyn Y. Nishimi. (February 2004). Bioethics and Public Policy: Still Seeking a Forum. Politics and the Life Sciences. ● Article: George J. Annas. (1994). Will the Real Bioethics (Commission) Please Stand Up? Hastings Center Report. ● Article: Kathi E. Hanna, Robert M. Cook-Deegan, and Robyn Y. Nishimi. (August 1993). Finding a Forum for Bioethics in US Public Policy. Politics and the Life Sciences, 12(2). ● Memo from Ginny Corson to Cook-Deegan. (July 1, 1994).
Cook-Deegan Box 5/9
● Fax from Anne Rufo and Elizabeth Thomson to NIH-DOE ELSI working group members. (September 13, 1994). Draft: NIH-DOE Joint Working Group on the Ethical, Legal, and Social Implications of Human Genome Research. ● Fax from Nancy S. Wexler to Francis Collins. (September 11, 1994). ELSI Mission Statement. ● Report: Ruth Chadwick, Daniela Coli, Henk ten Have, Jǿrgen Husted, Claudio Pogliano, and Darren Shickle. (1993). Ethical Implications of Human Genome Analysis for Clincal Practice in Medical Genetics with special reference to Genetic Counseling. ● Letter from Francis Collins to David L. Rimoin and Maimon M. Cohen. (April 27, 1994). ● Letter from Hans S. Goeri to Phillip Reilly and Jean McEwen. (August 29, 1994). ● Letter from Dorothy Nelkin to ELSI Working Group Members. (August 4, 1994). Summary and Action Items. ● Fax from Anne Rufo to NIH-DOE ELSI Working Group Members. (August 19, 1994). Federal Register notice on the National Bioethics Advisory Commission, ACMG/ASHG comments on the IOM Report, and ACMG Policy Statement on the Fragile X Testing. ● Fax from Francis S. Collins to Cook-Deegan. (August 29, 1994). Letter from Maimon M. Cohen to Francis S. Collins. ● Fax from Anne Rufo to NIE-DOE ELSI Working Group Members. (August 19, 1994). Federal Register notice on the National Bioethics Advisory Commission, ACMG/ASHG comments on the IOM Report, and ACMG Policy Statement on the Fragile X Testing. ● Email from Michael Yesley to Cook-Deegan and Anne Rufo. (August 24, 1994). Genetics provisions in the House report. ● News: Database available on current research involving human subjects. (April 4, 1994). ● Report: US Department of Energy, Office of Energy Research and Office of Health and Environmental Research. (March 1994). Human Genome: 1993 Program Report.
Folder 2 ● Memo from Anne Rufo to NIH-DOE ELSI Working group members. (October 19, 1994). Follow-up materials from the ELSI working group meetings. ○ Minutes and action items from the October 3 Working group meeting ○ NCHGR Press Release on the grants awarded on genetic testing for cancer risks and the one-page abstract of each grant. ○ Book reviews from the New York Times on behavioral genetics. ■ Natalie Angier. The Homosexual pedigree. New York Times. ■ Malcolm W. Browne. What is intelligence, and who has it? The New York Times Book Review. ○ Recent articles on the ELSI program published October 3 in The Scientist ■ Franklin Hoke. (October 3, 1994). Genome project ethics office is achieving new prominence in national policy debate. The Scientist. ○ Several articles of interest from the October 7 issue of Science Magazine. Cook-Deegan Box 5/9
■ Eliot Marshall. (October 7, 1994). HGS opens its databanks- for a price. Science 266. ■ Eliot Marshall. (October 7, 1994). Grant Applications pile up at NIH. Science 266. ■ Yoshio Miki, Jeff Swensen, Donna Shattuck-Eidens, P. Andrew Futreal, Keith Harshman, Sean Tavtigian, Qingyun Liu, Charles Cochran, L. Michelle Bennett, Wei Ding, Russell Bell, Judith Rosenthal, Charles Hussey, Tranh Tran, Melody McClure, Cheryl Frye, Tom Hattier, Robert Phelps, Astrid Haugen-Strano, etc. (October 7, 1994). A Strong candidate for the breast and ovarian cancer susceptibility gene BRCA 1. Science 266. ■ Sherif E. Gabriel, Kristen N. Brigman, Beverly H. Koller, Richard C. Boucher, and M. Jackson Stutts. (October 7, 1994). Cystic fibrosis heterozygote resistance to cholera toxin in the cystic fibrosis mouse model. Science 266. ■ P. Andrew Futreal, Qingyun Liu, Donna Sttuck-Eidens, Charles Cochran, Keith Harshman, Sean Tavtigian, L. Michelle Bennett, etc. (October 7, 1994). BRCA1 mutations in primary beast and ovarian carcinomas. Science 266. ● Fax from Ellen Robinson to Cook-Deegan. ○ Letter from Nancy Wexler to ELSI Working group member. (October 11, 1994). ○ Document: Mission Statement (Draft: September 27, 1994). ○ Letter from Nancy Wexler to Maimon M. Cohen. ● Letter from Nancy Wexler to Cook-Deegan. (August 12, 1994). ● Fax from Robyn Y. Nishimi to Cook-Deegan. ○ (April 27m 1994). The Blue Sheet.
Folder 3 ● Article: Stephen Jay Gould. (November 24, 1994). Curveball. The New Yorker. ● Article: Stealing God’s Stuff. Christianity Today. th ● Document: Meeting [18 meeting of the NIH-DOE joint working group on ethical, legal, and social implications of human genome research] Agenda. ● Letter from Hans S. Goerl to the editors of The Chronicles of Philanthropy. ● Document: Mission Statement NIH-DOE ELSI Working group on the ethical, legal, and social implications of Human Genome Research. ● Article: Henry Louis Gates, Dante Ramos, Walter Lippmann, Alexander Star, Martin Peretz, Stanley Crouch, Glenn Loury, Andrew Hacker, Jeffrey Rosen, Charles Lane, Richard Nisbett, Nathan Glazer, Hugh Pearson, Alan Wolfe, John B. Judis, Ann Hulbert, Randall Kennedy, Leon Wieseltier, and Michael Lind. (October 31, 1994). The Issue. The New Republic. ● Article: edited by: CAN’T READ THE NAME. The Bell Curves’ Agenda. The New York Times. ● Article: Charles Lane. (December 1, 1994). The tainted sources of “The bell curve.” The New York Review. ● Article: Barbara Reynolds. (October 21, 1994). Low-IQ hype calls for new IQ-I quit- movement. USA TODAY. ● Memo from Teresa Doksum to ELSI Working Group members. (November 29, 1994). Annotated bibliography of behavioral genetics. Cook-Deegan Box 5/9
● Article: Leslie Lenlowsky. (November 29, 1994). What philanthropy can learn from “The Bell Curve.” ● Article: Jason DeParle. (October 9, 1994). Daring research or ‘Social science pornography’. The New York Times Magazine. ● Letter from Jonathan Beckwith to Ann Rufo. (November 12, 1994). ○ Draft proposal for a statement to be issued by ELSI working group on Herrnstein-Murray Book. ● Article: (October 20, 1994). What if intelligence is inheritable? Nature. ● Email from Ellen Robinson to Cook-Deegan. (November 7, 1994). Mission Statement. ● Letter from Lori Andrews to Executive committee and Dot Nelrin. (November 16, 1994). Behavioral Genetics statement. ● Letter from Lori Andrews to Executive committee and Dot Nelrin. (November 16, 1994). Behavioral Genetics statement. ● Letter from Jon Beckwith. (November 23, 1994). Media Advisory. ● Article: Jerry Adler. Beyond the bell curve: Forget intelligence- what natters in our society is looks. The Pursuit of Happiness. ● Document: Mission Statement (Draft: October 31, 1994). ● Document: Mission Statement (Draft: September, 1994) and ELSI agenda. ● Fax from Anne Rufo to ELSI working group executive committee. (October 25, 1994). OTA Testimony before the Subcommittee on Energy Committee on Science, Space and Technology. ● Report: Michael S. Yesley. (Draft: November 25, 1994). Side-by-side comparison of five proposals for the protection of health information or genetic information and samples. ● Report: George Annas. (Draft). Genetic Privacy Act. ● Email from Ami Jaeger to Cook-Deegan. Genetic Privacy Act. ● Memo from Cook-Deegan to ELSI Working Group. (November 28, 1994). Questions for discussion of privacy. th ● Document: Meeting Agenda [18 mtg of the NIH-DOE Joint Working Group on Ethical, Legal, and Social implications of human genome research]. (Draft). ● Report: Jean E. McEwen and Philip R. Reilly. (1994). Regulation DNA banks and DNA databanks recommendations for a model code of conduct. ● Memo from Anne Rufo to NIH-DOE ELSI working group. (November 7, 1994). Materials for the ELSI working group meeting December 5-6, 1994). ● Letter from Ellen Wright Clayton to ELSI working group. (November 3, 1994). ● Letter from Ami S. Jaeger to Cook-Deegan. (November 14, 1994). Prelimnary draft of a policy document about the cultural perceptions of genetics. ● Report: (Draft: August 30, 1994).Informed consent for genetic research on stored tissue samples. ● Report: (Draft: October 28, 1994).Informed consent for genetic research on stored tissue samples. ● Report: George J. Annas, Leonard H. Glantz, & Patricia A. Roche. Genetic Privacy Act: Executive summary. th ● Document: Meeting Agenda [18 mtg of the NIH-DOE Joint Working Group on Ethical, Legal, and Social implications of human genome research]. (Draft). Cook-Deegan Box 5/9
● Email from Cook-Deegan to Ami Jaeger and Anne Rufo. (November 22, 1994). Comments on McEwen/Reilly paper. ● Document: Informed consent for genetic research and genetic privacy: Policy themes and key issues. ● Report: Edward R.B. McCabe. Summary of comments and concerns regarding the committee statement on the use of existing tissue specimens for genetic research. ● Memo from Cook-Deegan to Anne Rufo and Ami Jaeger. (November 28, 1994). Questions for discussion of privacy. ● Memo from Anne Rufo to NIH-DOE ELSI working group member. (November 29, 1994). Additional materials for the ELSI working group mtg December 5-6, 1994. ● Memo from Ellen Wright Clayton to ELSI Working group. (November 28, 1994). Comparison of the CDC and my drafts. ● Report: Lori B. Andrews. The implications of the NIH ELSI Research for privacy policy. ● Document: List of Participants [NIH-DOE ELSI working group mtg] ● Report: George J. Annas, Leonard HJ. Glantz, and Patricia A. Roche. Genetic Privacy Act: Executive summary. ● Report: Jean E. McEwen and Philip R. Reilly. (1994). Regulation DNA banks and DNA databanks recommendations for a model code of conduct. ● Report: (Draft: August 30, 1994).Informed consent for genetic research on stored tissue samples. ● Report: (Draft: October 28, 1994).Informed consent for genetic research on stored tissue samples.
Folder 4 ● Agenda [NIH/DOE Working group on ethical, legal, and social implications of human genome research]. ● Roster. [NIH/DOE Working group on ethical, legal, and social implications of human genome research]. ● Participant List. [NIH/DOE Working group on ethical, legal, and social implications of human genome research]. ● Request for application: studies of genetic testing and counseling for heritable breast, ovarian and colon cancer risks. ● Memo from Chief of ELSI Branch to NIH-DOE ELSI working group members. (February 18, 1994). Workshop follow-up action items. ● Magazine: The Disability & RESource Rag. January/ February 1994. ● Report: The National Advisory Council for Human Genome Research. Statement on use of DNA testing for presymptomatic identification of cancer risk. ● Memo from Thomas H. Murray to Erin Juengst. (January 28, 1994). NCHGR Council Statement on Genetic Testing for Cancer Risk. ● Report: Committee of the Health Council of the Netherlands. (1994). Heredity: Science and Society on the possibilities and limits of genetic testing and gene therapy. Human Gene Therapy 5. ● Agenda for The Ethical Implications of the New Genetics. ● Letter from David Rimoin to Francis Collins. (February 4, 1994). ● Letter from Robert M. Greenstein to Francis Collins. Cook-Deegan Box 5/9
● Memo from Henry T. Lynch to Eric Jungst and Elizabeth Thomson. Statement on use of DNA testing for pre-symptomatic identification of cancer risk. ● Document: Disability Amendments of 1994. ● Document: Privacy Provisions of Major Health Care Reform Proposals. ● Report: Kay Johnson and Barry Ensminger. (February 15, 1994). Workshop on genetics and health care reform: ethical, legal & social implications of Human Genome Research: Genetic discrimination and health care reform. ● Report: Bob Griss. (Draft: February 15, 1994). Comparison of major national health care reform bills based on the recommendations of the working roup on ethical. Legal, and social implications (ELSI) of the Human Genome Project at the The National Institutes of Health. ● Letter from Abbey S. Meyers to Nancy Wexler. (February 14, 1994). ● Report: Maxwell J. Mehlman, Jeffrey Botkins, Alan Scarrow, Amy Woodhall, Julie Ginsberg, & Ellen Siebenschuh. (Draft: February 7, 1994). Coverage of genetic technologies under President Clinton’s national health reform plan. ● Report: Citizen Action. (December 6, 1994). A Comparison of Congressional health reform proposals. ● Guidelines: ELSI recommendations. ● Document: Family Voices. The American Health Security At and the voices of families. ● Letter from Janet D. Rowley, David L Rimoin, Karen Greendale, Cynthia Prows, Thaddeus E. Kelly, and Ann P. Walker to Hillary Rodham Clinton. (October 7, 1993). ● Document: Council of Medical Genetics Organizations. Genetics and Health Care Reform: Fact sheet. ● Letter from Alliance to Tom Harkin. (December 16, 1993). ● Report: Elizabeth A. Buerger. (December 1, 1993). Health Care Reform Initiatives in the States. ● Article: Lawrence O. Gostin, Joan Turek-Brezina, Madison Powers, Rene Kozloff, Ruth Faden, & Dennis S. Steinauer. ( November 24, 1993). Privacy and Security of a personal information in a new health care system. JAMA, 270(20). ● Report: Laboratory Issues in Human Genetics. ● Article: Elyse Tanouye. Gene testing for cancer to be widely available, raising thorny questions. ● Article: FDA. Women in clinical trials. (December 1993). Women in clinical trials. Medical Bulletin. ● Report: March of Dimes. March of Dimes summary of health care reform proposals. ● Document: ELSI insurance task force recommendations vs. the major health reform plans. ● Article: Lawrence O. Gostin, Joan Turek-Brezina, Madison Powers, Rene Kozloff, Ruth Faden, & Dennis S. Steinauer. ( November 24, 1993). Privacy and Security of a personal information in a new health care system. JAMA, 270(20).
Cook-Deegan Box 5/9
Folder 5 ● Summary: facilitated by Barry Anderson & Gregory Fowler. (April 18. 1994). Genome pilot focus group. ● Document: National Center for Human Genome Research. Program announcement: Individuals postdoctoral and senior fellowships in genomic analysis and technology and the ethical, legal, and social implications of Human Genome Research. Cook-Deegan Box 6/9
Folder 1 ● Article: George J. Annas. (November 17, 1993). Privacy rules for DNA databanks: Protecting coded ‘future diaries.’ JAMA, 270(19). ● Report: Jean E. McEwen & Philip R. Reilly. Stored gutherie cards as DNA “banks.” ● Report: Jean E. McEwen. A survey of state crime laboratories regarding DNA forensic databanking. ● Report: Jean E. McEwen & Philip R. Reilly. A review of state legislation on DNA forensic databanking.
Folder 2 ● Memo from Chief of ELSI Branch to NIH-DOE working group. (April 13, 1994). Activities Update (reports and summaries from the 14 ELSI working group mtgs). ○ Article: National Center for Human Genome Research. (March 9, 1994). Statement on use of DNA testing for presymptomatic identification of cancer risk. JAMA, 271(10). ○ Tab II: Agenda Development Workshop. (February 5-6, 1990). ○ TAB III: Workshop on the introduction of new genetic tests. (September 10, 1990). ■ News: ELSI working group targets research, policy development needs. (November 1990). Human Genome News. ○ Tab IV: ELSI working group mtg summary. (January 7-8, 1991). ■ News: ELSI examines progress. (November 1991). Human Genome News. ○ Tab V: NIH-DOE joint working group on the ELSI of Human Genome Research. (April 29-30, 1991). ■ News: ELSI working group studies genetic bias. (September 1991). Human Genome News. ○ Tab VI: Summary of privacy protections for genetic information mtg (September 11-12, 1991). ■ News: NIH-DOE ELSI working group hears panel on genetic privacy. (November 1991). Human Genome News. ○ Tab VII: Summary of February 10, 1992 mtg ○ Tab VIII: News: NIH-DOE joint ELSI working group holds first public forum. (July 1992). Human Genome News. ○ Tab IX: News: DOE, NIH ELSI grantees evaluate progress. (January 1993). Human Genome News. ○ Tab X: workshop summary January 28-29, 1993. ○ Tab XI: News: Insurance task force makes recommendations. (July 1993). Human Genome News, 5(2). ○ Tab XII: summary from mtg of cystic fibrosis studies consortium and NIH/DOE joint working group on ELSI. ■ Report: Lori Andrews. Testing and counseling for cystic fibrosis mutations: An independent contractor report on interim findings. ■ News: NIH consortium reviews CF resting, counseling. (January 1994). Human Genome News, 5(5). ○ Tab XIII: December 14-15 mtg report ○ Tab XIV: February 15 mtg report Cook-Deegan Box 6/9
Folder 3 ● Invoice for order of Genetic Discrimination and the Americans with Disabilities Act by Susan Malamate Vazakas. ● Email from Cook-Deegan to Lauren McCain. (April 28, 1994). Thought maybe you’d like to respond. ● Email from BIOMED-L Biomedical ethics to Recipients of BIOMED-L digests. BIOMED-L digests- 14 Apr 1994 to 17 Apr 1994. ● Letter from Robert J. Pokorski to Cook-Deegan. ● Email from Robyn Nishimi to Cook-Deegan. (May 12, 1994). Failed Mail. ● Email from Eric Juengst to Cook-Deegan. (May 12, 1994). 4/20-21 ELSI working group meeting. ● Faxed memo from Tracey Wright to Cook-Deegan. (May 12, 1994). Interview questions. ● Fax from Pilar Ossorio to Cook-Deegan. (May 11, 1994). Proposal for the October mtg [Bridging the Gap]. ● Itinerary for Cook-Deegan. ● Email from Francis Collins to Cook-Deegan. (May 4, 1994). Postvisit rumbles. ● Fax from Mark A. Rothstein to Francis Collins. (April 26, 1994). ● Fax from Cook-Deegan to Nancy Wexler. (March 1, 1994). ELSI and you. ● Email from Cook-Deegan to Mary-Claire King. (March 3, 1994). Slides of human rights/genetics work? ● Email from Cook-Deegan to Francis Collins and Nancy Wexler. (February 18, 1994). NCHGR ELSI policy studies. ● Email from Cook-Deegan to Francis Collins. (February 28, 1994). 2/18 message received? ● Correspondence between Lori Andrews to Cook-Deegan. (February 18, 1994). NCHGR ELSI policy studies. ● Correspondence between Francis Collins to Cook-Deegan. (March 1, 1994). ELSI and you. ● Email from Lori Andrews to Eric Juengst. (April 7, 1994). Proposed Medical Privacy Statue. Folder 4 ● Email from Lori Andrews to Michale Yeasley. IOM committee recommendations about privacy. ● Report: Lori Andrews. Creating policies for family privacy: Some factors to consider. ● Report: Lori Andrews: The NIH policy Promise: Can ELSI deliver? ● Letter from Mark A. Rothstein to Eric Juengst. (March 24, 1994). ● Memo from Executive committee to ELSI working group. Summary of executive committee conference calls. ● Letter from Lois Banta to Cook-Deegan. (May 10, 1994). Syllabus for couse. ● Memo from Michael S. Yesley to Cook-Deegan. (April 7, 1994). Genetic databank materials; Fair Health Information Practices Act of 1994. ● Survey of members of genetic support groups. GU Child Development Center and The Alliance of Genetic Support Groups. ● Report: Frank P. Grad, & Ilise L. Feitshans. Materials for April 21-22, 1994 meetgin of the NIH-DOE Working group on ELSI. Cook-Deegan Box 6/9
Folder 5 ● Jay Katz, Edmund D. Pellegrino, Jesse A. Goldner, R. Alta Charo, & Nicolas P. Terry. (1993). Saint Louis University Law Journal: Health Law Symposium, 38 (1). ● Correspondence between Cook-Deegan to Francis Collins. (April 14, 1994). BCD/Sykes aftermath. ● Email from Cook-Deegan to Francis Collins. (April 13, 1994). Revised response strategy. ● Email from Cook-Deegan to Francis Collins. (April 9, 1994). More on Kathy Sykes. ● Email from Cook-Deegan to Lori Andrews. (April 6, 1994). Congrats. ● Email from Cook-Deegan to Eric Juengst. (April 4, 1994). Extended ELSI staff meeting, April 20. ● Email from Cook-Deegan to Eric Juengst. (April 4, 1994). ELSI intramural program. ● Correspondence between Francis Collins to Cook-Deegan. (April 1, 1994). Jobstuff ● Email from Cook-Deegan to Francis Collins. (April 1, 1994). Next steps. ● Email from Francis Collins to Cook-Deegan. (March 31, 1994). Job Particulars. ● Correspondence between Cook-Deegan to Eric Juengst. (March 30, 1994). ELSI intramural program. ● Email from Cook-Deegan to Francis Collins. (March 29, 1994). Job particulars. ● Email from Cook-Deegan to Francis Collins. (March 22, 1994). Michael Yesley. Tomorrow night’s mtg still on? ● Email from Cook-Deegan to Francis Collins. (March 3, 1994). Wed @ 4:30 fine
National Center for Human Genome Research Folder ● Task Force on Genetic Testing: Background and Purpose. (May 19, 1994 draft). ● Misson Statement (Sept. 27, 1994). ● Memo on Behavioral Genetics for the ELSI working group. (Sept. 7, 1994). D. Nelkin. ● Memo from Nancy Wexler to Cook-Deegan. (sept. 30, 1994). Dinner on Sunday, oct 2. ● Memo from Anne Rufo to ELSI working group members. (sept. 27, 1994). Materials for ELSI working group meeting Monday, oct. 3, 1994. th ● Meeting agenda. 17 mtg of the NIH-DOE joint working group on ELSI. ● Summary of remarks: discussion on the ELSI working group missino statement national advisory council for human genome research. (sept. 22, 1994). ● Roster: NIH-DOE joint working group on ELSI of human genome research. ● Letter from Ellen Robinson to Cook-Deegan. (sept 30, 1994). Mission statement draft.
Cook-Deegan Box 6/9
Folder 7 (ELSI W6 privacy) ● Memo from ELSI branch chief to NIH-DOE working group members. (july 6, 1993). July meeting and attached materials. ○ Concept paper for ELSi’s initiative on the implications of non-medical genetic information. D. Nelkin. ● Email from Lori Andrews to Jean McEwen and Philip Reilly. (July 18, 1994). ○ Report: Jean McEwen and Philip Reilly. Regulating DNA Bancks and DNA dtatbanks: Recommendations for a model code of conduct. ○ Article: American Society og Human Genetics. (1987). DNA Banking and DNA analysis: Points to consider. ○ Registrtation form and tentavive agenda for Informed Consent for Genetic Studies on Stored Tissue Samples. ○ Informed consent for gentic studies on stored tissue samples. (June 28, 1994). ● Memo from Kay Johnson to Genetics and Health Care Reform Group. Next Steps. ○ HCR target list. ○ Senate Labor and Human Resource Xommittee, Amendments to Health Security Act. ○ The White House Health Care Delivery Room. (July 20 1994). ○ Report: March of Dimes FY 95 Fedaerl Funding Priorities ○ Report: Michele Schoomaker. (June 30, 1994). New Medical Technology and Health Care Reform. ● ELSI portfolio review and database mockups. (June 29m 1994). ○ The NIH policy promise: Can ELSI deliver? ○ Memo from Cook-Deegan to Francis Collins. (April 23, 1994). Proposed next steps to establish NIH-ELSI intramural program. ○ Memo from Cook-Deegan to Francis Collins. (April 25, 1994). Details about esstablishing an NIH intramural ELSI program. ● Conference Description (July 1994 drafe #6). ○ Conference Proposal (draft # 5 June 16, 1994). ○ Potential participants for the Oct meeting. ○ Conference proposal (draft #3 May 31, 1994). ● Draft comment on H.R. 4077. ○ Philip Reilly’s recommendations regarding privacy policies. ○ Draft set of guidelines on research use of stored human tissue ○ Language on Kennedy health reform bill ○ Outline for and an examoe of the “portfolio review” ○ DEO Staff proposal for the Oct ELSI mtg ○ Leslie Robert’s report on our health reform workshop ○ Pilar Ossorio’s report on ELSI’s genetic privacyu workshop ○ Status report pm University of Maryland conference planning.
Cook-Deegan Box 6/9
Folder 8 (ELSI mtg 12/93 and follow-up on mission ○ NIH-DOE ELSI working group December 14-15 meeting report. (draft Jan 21, 1994). ○ Article: Leslie Roberts. (November-December 1993). Whither the ELI Program? Hastings Center Report. ○ National Center for Human Genome Research (Left Sleeve) ■ Participants of NIH-DEO joint working group on ELSI. (December 14-15, 1993). ■ Memo from ELSI branch chief to NIH-DOE ELSI working group. (December 10, 1993). Another view of the ELSI program. ■ Memo from Genetics services research coordinator to interested individuals in attending NIH/DOE joing working group on ELSI. (December 1, 1993). Upcoming meeting December 14-15, 1993. ■ Memo from ELSI branch chief to participants. (December 1, 1993). Meeting plans. ■ Article: Jim Smith. (Oct. 21, 1993). Kary Mullis, Philo’s Nobel Lauriate. California: The Mendocino Beacon 117(2). ○ National Center for Human Genome Research (Left Sleeve) ■ Letter from Jon Beckwith to Eric Juengst. (Dec. 20, 1993). ■ NIH-DOE ELSI working group. (Dec 22, 1993 draft). December 14-15 Meeting report and follow-up plan. ○ Article: Eliot Marshall. ( Nov. 1993). A Tough Line on Genetic Screening. Science 262. ○ Article: (Nov. 6, 1993). Genetic testing: Committee raise the right questions. The Dallas Morning News. ○ Report: Lori B. Andrews, Jane E. Fullarton, Neil A. Holtzman and Arno G. Motulsky (editors). (1993). Assessing the genetic risk: Implications for health and social policy. ○ Article: Research and policy agenda for the future. ○ Article: Leslie Roberts. (Oct. 1, 1993). Taking stock of the genome project. Science 262. ○ Article: Francis Collins and David Galas. (Oct. 1, 1993). A new five-year plan for the US human genome project. Science 262. ○ Article: A. Jaime Cuticchia, Michael A. Chipperfield, Christopher J. Porter, William Kearns, and Peter L. Pearson. Managing all those bytes: The human genome project. Science 262.
Cook-Deegan Box 7/9
National Center for Human Genome Research Folder (left sleeve) ● ELSI: First five year goals of completion plan (and second five year goals initiation plan. (Draft April 18, 1993). ● Report: Task force on genetic information and insurance delivers reports to ELSI working group. (May 10, 1993). ● Report: Paul R. Billings. A study of genetic discrimination. ● Fax from Eric Juengst to Cook-Deegan. (May 6, 1993). Finalized agenda and corrected page to substitute in the insurance task force report. ● Ruth Hubbard and Elijah Wald. (1993). Exploding the Gene Myth. Boston: Beacon Press. ● Report: Human genome insurance project report on health insurance: University of Florida College of Medicine. (April 1993). Executive Summary. ● Memo from ELSI branch acting chief to ELSI working group members. (May 4, 1993). Candidates for ELSI working group.
National Center for Human Genome Research Folder (right sleeve) ● Report: NIH/DOE working group on ELSI of human genome research. (Pre-publication copy May 10, 1993). Genetic Information and Health Insurance. ● Report: NIH/DOE working group on ELSI of human genome research. (draft ). Workshop summary Jan. 28-29, 1993. ● NIH/DOE working group on ELSI of human genome research. May 10-11 meeting agenda ● NIH/DOE working group on ELSI of human genome research roster ● Memo from ELSI branch acting chief to NIH/DOE working group members. (May 3, 1993). May 10-11 meeting. ● Report: Genetic Privacy Collaboration. Status Report- May 7, 1993. ● Letter from Harvie E. Raymond to Thomas Murray. (April 23, 1993). ● Letter from Rob Bier to Thomas Murray. (April 20, 1993). ● Newsletter: National Center for Research Resource. (November/December 1992). Reporter 16(8). ● Memo from ELSI branch acting chief to Ruth Bugler. (Dec. 17, 1992). Current ELSI policy development strategy: The ELSI Uncommission. ● Letter from Eric Juengst to Robyn Y. Nishimi. (March 11, 1993). ● Email from Michael Yesley to Eric Juengst. ● Report: NIH/DOE working group on ELSI of human genome research. (pre-publication copy may 10, 1993). Genetic information and health insurance. ● Article: Ethical, Legal, and Social Implications. (April 1993).
Cook-Deegan Box 7/9
Folder 2 (ELSI mtg 1/93 through 5/ 93) ● Article: Mary E. D’Alton and Alan H. DeCherney. (Jan 14, 1993). Prenatal diagnosis. The New England Journal of Medicine 328(2). ● Letter from Sue Levi-Pearl to Abbey Meyers. (May 19, 1993). ● Memo from ELSI Program analyst to all interested parties. (Jan 28, 1993). February meeting. ● Roster of Insurance task force members. ● Roster of participants ○ Update of the ELSI grants list through Jan. 1992. ○ Books and articles supported by the NIH/DOE working group on ELSI of human genome research ○ NIH/DOE working group on ELSI of human genome research roster ○ NIH/DOE working group on ELSI Strategic planning workshop Jan 28-29, 1992. ○ Commentary: Frederick P. Li, Judy E. Garber, Stephen H. Friend, Louise C. Strong, Andrea F. Patenaude, Eric T. Juengst, Philip R. Reilly, Pelayo Correa, and Joseph F. Fraumeni. (Aug 5, 1992). Recommendations on predicative testing for germ line P53 mutations among cancer-prone individuals. Journal of the National Cancer Institute, 84(15). ○ Memo from Eric Juengst to ELSI strategic planning workshop participants. (Jan. 25, 1993). Mailing confirmation and additional information item. ○ NIH/DOE working group on ELSI of human genome research Strategic planning workshop agenda. ○ Memo from ELSI branch acting chief to NIH/DOE working group on ELSI of human genome research. (January 19, 1993). January 28-29 meeting. ○ NIH/DOE working group on ELSI of human genome research roster ○ Memo from ELSI program analyst to ELSI working group. (Jan 19, 1993). January 28- 29, 1993 meeting. ○ Report: National Center for Human Genome Research. (August 1992). Ethical, Legal, and Social Implications Program Funding Status Report, August 1992. ○ Memo from ELSI branch acting chief to January 28-29 ELSI planning workshop participants. (Jan. 19). New Horizons for the ELSI programs. ○ Letter from Philip Reilly to Francis Collins. (Dec 15, 1992). ○ Article: (1992). National Institutes of Health Workshop Statement: Reproductive genetic testing: Impact on women. American Journal of Human Genetics 51.
Cook-Deegan Box 7/9
Folder 3 (pedigree research OPRR/NCHGR conference, NIH 5-6 Oct 1992). ● Left sleeve ○ Memo from ELSI branch acting chief to invitees. (Aug 26, 1992). NIH workshop[ on genetic studies involving families. ○ Guideline: Guidelines to Informed Consent in Genetic Research. (draft Sept 29, 1992). ○ Agenda for Human Subjects in Genetic Research involving families: points to consider ○ Report: (draft Aug 12, 1992). H. Human genetic Research. ○ Report: Lisa S. Parker. Family Law, Family Dynamics and the Possibility of Coercion in Family Studies. ○ Report: Madison Powers. (Sept. 21, 1992). Publication-related risks to privacy: The ethical implications of pedigree studies. ○ Report: Nancy E. Kass. Participation in pedigree studies and the risk of impeded access to health insurance. ○ Memo from ELSI program analyst to Genetic family studies workshop participants. (Sept. 25, 1992). Background information paper. ● Right Sleeve ○ Participant Roster: human subjects in genetic research involving families: points to consider. Folder 4 (ELSI mtg 9/93) ● Article: Joseph S. Alper and Marvin R. Natowicz. (Oct 1993). On establishing the genetic basis of mental disease. Trends in Neurosciences 16(10). ● Article: Jon Beckwith. (May 1993). Thinking of Biology: A historical view of social responsibility in genetics. BioScience 43(5). ● Report: Francis Collins and David Galas. A new five-year plan for the US human genome program. ● Letter from Jon Beckwith to Cook-Deegan. (August 30, 1993). Curriculum. ● Memo from ELSI branch acting chief to ELSI working group members. (Sept. 7, 1993). Revised agenda for Friday. ● NIH/DOE working group on ELSI of human genome research planning summary ● Meeting agenda for 3rd mtg of the cystic fibrosis studies consortium and joint meeting with NIH-DOE ELSI working group meeting ● Roster: policy consultant for 3rd mtg of the cystic fibrosis studies consortium meeting with the joint NIH-DOE ELSI working group meeting ● Reference list ● Principal investigators for cystic fibrosis studies consortium ● Roster for NIH-DOE joint ELSI working group ● List of organizations sending representatives to meeting of CFSC and NIH/DOE joint ELSI working group ● Memo from genetics service research coordinator to individuals interested I attending meetings of the cystic fibrosis studies consortium and NIH/DOE joint ELSI working group. (Aug. 19, 1993). Upcoming meeting Sept. 9-10, 1993. ● Memo from ELSI branch acting chief to ELSI working group members. (Aug 3, 1993). Next HGP 5 year planning document. ● Memo from genetics service research coordinator and ELSI branch acting chief to members of the NIH-DOE joint ELSI working group. (Aug. 3, 1993). Background materials for the upcoming meeting of the NIH CFSC and the ELSI working group. ● Memo from ELSI branch acting chief to NIH-DOE ELSI working group members. (July 12, 1993). September meeting and attached materials. ● Article: Peter T. Rowley, Jeffrey C. Levenkron, Starlene Loader, and Charles E. Phelps. (Oct 1993). Cystic fibrosis carrier screening: Knowledge and attitudes of prenatal care providers. American Journal of Preventative Medicine, 9(5). ● Memo from Genetics services research to participants on upcoming meeting of CFSC and ELSI. (Sept 1, 1993). Final mailing for Sept. 8-10, 1993 meeting. Cook-Deegan Box 7/9
Folder 5 (Finesilver 10th Federal Judicial Circuit Conf Tamarron, CO 21-25 July 1992). ● Letter from Sherman G. Finesilver to Cook-Deegan. (Aug. 3, 1992). ● Letter from Sherman G. Finesilver to Cook-Deegan. (Aug. 18, 1992). ● Letter from Eugene Murret to Cook-Deegan. (April 8, 1992). th ● Attendees List (10 Judicial conference) ● Report: Elizabeth T. Dunning. (1992). Cases interpreting the Civil Rights Act of 1991. ● Public Law 102-166-Nov. 21, 1991. ● Presented by Stephanie K. Seymour. Survey of Civil Rights and Employment Discrimination Cases. 10th Circuit: July 1991 through July 1992. th ● Letter from Cook-Deegan to Sherman G. Finesilver. (July 3, 1992). 10 circuit judicial conference speech. ● Letter from Sherman G. Finesilver to Nancy Sabin Wexler. (March 30, 1992). Resume ● Letters from Sherman G. Finesilver to Cook-Deegan. (March 20 & 25, 1992). Invitation to 10th circuit judicial conference. ● Letter from Eugene J. Murret to Cook-Deegan. (June 17, 1992). Confirmation of Reservation. th ● Presented by Audrey Nelson-Schneider to the 10 circuit judicial conference. (July 22, 1992). He speaks, she speaks: What different things they say. th ● 3 Programs for 10 circuit judicial conference.
Cook-Deegan Box 7/9
Folder 6 (ELSI working grp 5/92-9/92) ● NIH and DOE programs on ELSI workshop folder ○ Letter from Frank P. Grad to Cook-Deegan. (Sept. 17, 1992). ○ Working group roster ○ Staff roster ○ Roster of participants ○ U.S. Dept of Energy Human Genome Program. (1992). ELSI abstracts from the DOE Human Genome 1991-92 Program Report. ○ U.S. Dept of Energy Human Genome Program. (August 1992). Genome report card. ○ News: US DOE and NIH. (July 1992). Human Genome News, 4(2). ○ Pacific Center for Health Policy and Ethics and UniHealth America Foundation of UniHealth. Invitation to Charting the Genome: Implications of genetic technology for healthcare practioners in the 1990’s. ● Binder clip 1 ○ Letter from Daniel Drell and Eric Juengst to ELSI working group. (Nov. 20, 1992). ○ Memo from ELSI branch acting chief. (Oct 22, 1992). September meeting follow-up. ○ Draft letter to grantee workshop participants from Eric Juengst. NIH-DOE grantee workshop roster of participants. ○ Memo from ELSI program analyst to ELSI working group. (Oct. 15, 1992). Evaluation of the ELCI Grantee workshop. ○ Letter from Mark S. Frankel to Nancy Wexler. (Sept. 23, 1992). ○ Letter from Paul R. Billings to Nancy Wexler. (Sept. 21, 1992). ○ Letter from Jonathan Beckwith to Eric Juengst. (Sept. 21, 1992). ○ Draft new member solicitation letter from Eric Juengst. ○ Agenda for Human subjects in genetic research involving families: points to consider. ○ Participant roster for Human subjects in genetic research involving families: points to consider. ○ Report of 31 December 31, 1991. ○ Names and addresses of the members of working group for ELSI for the human genome analysis programme. ● Letter from Laura Gil to Cook-Deegan. (Feb. 29, 1992). Questions: ownership, UNESCO involvement, future legislation. ● Revised Agenda for ELSI of Human Genome Research. ● Memo from ELSI branch acting chief to NIH/DOE Grantees. September 14-16 Grantee Workshop Background Materials II. ● Report: Activities of the NIH-DOES Joint working group on ELSI. (July 1992). ● News: (July- August 1992). Special Supplement, Hasting Center Report. ● National Center for Human Genome Research: ELSI. (August 1992). Funding Status Report, August 1992). ● US DOE. (February 1992). Human Genome 1991-92 Program Report. ● Memo from ELSI branch acting chief to NIH-DOE ELSI grantees. (July 23, 1992). ELSI grantee workshop, Sept 14-16. ● News: Joseph Palca. (Aug. 7, 1992). NIH wrestles with furor over conference. Science, 257. ● Binder Clip 2 ○ Memo from ELSI branch acting chief to ELSI working group members. (July 24, 1992). September meeting. Cook-Deegan Box 7/9
○ Memo from NCHGR acting director to NCHGR staff. (June 19, 1992). Establishment of the ELSI branch within the NCHGR ○ Dept of Health and Human Service. Statement of organizations, functions and delegations of Authority. ○ News: Hasting Center. Genetic Testing must no trade away privacy. The Hasting Report. ○ Report: ELSI. (March 1992). Grant-making status report, March 1992. ○ News: David Spurgeon. (June 11, 1992). Canada commits money for human genome research. Nature, 357. ● Letter from Catherine V. Hayes to Cook-Deegan. (July 1992). Invitation to participate in a nationwide study of genetic discrimination. ● 2 pages of notes. ● Report: NIH. Report on Social, Legal, and Ethical Issues in biomedical and behavioral research. ● News: Jeffrey Mervis. (April 2, 1992). NIH forms policy centre to study research ethics. Nature, 356(6368). ● Memo from ELSI director to ELSI working group members. (April 9, 1992). ○ Preliminary agenda for meeting ○ Report: meeting summary (Feb. 10, 1992). ○ News: David Brown [and] Malcolm Gladwell. (Apr 2, 1992). Nobel Prize Biologist Watson plants to resign US position. Washington Post. ○ Letter from Bob Wise to Louis W. Sullivan. (April 6, 1992). ○ Memo from ELSI program director to ELSI working group members. (April 15, 1992). ○ Memo from ELSI program director to NCHGR acting director and deputy director. (April 14, 1992). Committee on Government Operations Report. ○ Report: Committee on Government Operations. (1992). Sixteenth Report. ○ HR 685. ● Memo from ELSI program analyst to all interested parties. (May 14, 1992). ELSI insurance task force meeting NIH cystic fibrosis consortium meeting. Agenda and tentative agenda. ● Memo from ELSI program director to ELSI working group. (April 3, 1992). ELSI update. ● Memo from Cook-Deegan to Eric Juengst. (April 16, 1992). Gellman report. ● Memo from ELSI program director to ELSI working group members. (April 15, 1992). Cook-Deegan Box 8/9
Folder 1 (AAAS genetic testing mtg Los Alamos 6/92). ● Tourette Syndrome Envelope ○ Letter from Sue Levi-Pearl to Cook-Deegan. (June23, 1992). ○ Tourette Syndrome Association (TSA) Borad Direct. (June 1992). Policy Statement. ○ News: Gene fault linked to behavioral ills. (Oct 2, 1991). The Ventura County Star Free Press. ○ Article: Harvey S. Singer [and] John T. Walkup. (1991). Tourette syndrome and other Tic disorders: Diagnosis, pathophysiology, and treatment. Medicine, 70(1). ○ Report: David E. Walker [and] Michelle I. Millberg. (Oct. 1991). Second International Scientific Symposium on Tourette Syndrome. ● Letter from Gilbert S. Omenn to Alta Charo. (June 30, 1992). ○ Article: Gilbert S. Omenn, Judith G. Hall, [and] Kenneth D. Hansen. (1980). Genetic counseling for adoptees at risk for specific inherited disorders. American Journal of Medical Genetics, 5 . ○ J.O. Weiss, B.A. Bernhardt, [and] N.W. Paul (eds). (1984). Birth defects: original article series, 20. ○ Article: John R. Ball [and] Gilbert S. Omenn. Genetics, adoption, and the law. ○ Article: Kenneth D. Hansen [and] Gilbert S. Omenn. Genetic isolation of adoptees. Journal of Pediatric Opthalmology and Strabismus, 17(4). ○ Article: Kenneth D. Hansen [and] Gilbert S. Omenn. Genetic counseling: The search for the adopted child. The Journal of Legal Medicine. ● Letter from Michael S. Yesley to Cook-Deegan. (June 22, 1992). ● Summary: Madison Powers. Privacy and the control of genetic information. ● Summary: Alan F. Westin. (June 19, 1992). Privacy issues in future uses of genetic information. ● Agenda for AAAS/ABA Conference on Frontier Issues in Ethics, Law, and Genetic Testing. ● Preliminary agenda for AAAS/ABA Conference on Frontier Issues in Ethics, Law, and Genetic Testing. ● Invitations sent 4/7/92 for AAAS/ABA Conference on Frontier Issues in Ethics, Law, and Genetic Testing. ● List of participants as of 4/7/92 for AAAS/ABA Conference on Frontier Issues in Ethics, Law, and Genetic Testing ● Memo from Mark S. Frankel [and] to Advisory committee members. (April 9, 1992). Third Genetics Conference at Lost Alamos, June 18 -20, 1992. ● Article: AAAS. (April 24, 1992). Ethics, law, and the human genome. Science, 256. ● Article: Richard M. Glass. (1992). AAAS conference explores ethical aspects of large pedigree genetic research. JAMA, 267(16). ● Report: Thomas J. White. Intellectual property and genetic testing: A commentary. ● Memo from Mark S. Frankel [and] Albert H. Teich. (Nov. 3, 1992). Review of conference paper. Cook-Deegan Box 8/9
● Memo from Mark S. Frankel [and] Albert H. Teich. (Sept. 30, 1992). Review of conference paper. ● Report: Kate H. Murashige. Intellectual property and genetic testing. ● Notes ● Agenda for AAAS/ABA Conference on Frontier Issues in Ethics, Law, and Genetic Testing. ● Participant list for AAAS/ABA Conference on Frontier Issues in Ethics, Law, and Genetic Testing. ● Report: Kate H. Murashige. Intellectual property and genetic testing. ● Memo from Albert H. Teich [and] Mark S. Frankel. (June 9, 1992). Change in accommodation. Distribution of genetics and behavior scientific overview paper. ● Memo from Albert H. Teich [and] Mark S. Frankel. (June 3, 1992). Distribution of intellectual property paper and travel reminders. ● Memo from Albert H. Teich [and] Mark S. Frankel. (May 13, 1992). Update on conference plans. ● Participant list for AAAS/ABA Conference on Frontier Issues in Ethics, Law, and Genetic Testing.(May 13, 1992).
Folder 2 (ELSI mtg, 2/92) nd ● Agenda for 2 workshop on pre-symptomatic testing for germ line p53 mutations in cancer families. ● Memo from Elaine Lawson to Jane Fullarton. (April 22, 1992). Working group meeting summary. Suggestions for public hearing. ● Memo from ELSI program analyst to all interested parties. (March 11, 1992). Insurance task force meeting. ● Letter from Cook-Deegan to Nancy Wexler. (March 23, 1992). ● Report: ELSI. (Nov. 1991). Grant-making status report. ● Article: (Dec. 12, 1991). Individual postdoctoral and senior fellowships in genomic analysis and technology and the ethical, legal and social implications of human genome research. NIH Guide to Grants and Contracts, 20(46). ● Article: Eric Juengst. (Oct. 2, 1991). Priorities in professional ethics and social policy for human genetics. JAMA, 266(13). ● The Human Genome Project: New tools for tomorrow’s health research. US Department of Health. ● Report: ELSI. (Nov. 1991). Grant-making status report. ● Mtg of the NIH-DOE working group folder ○ Agenda (Draft) for conference on legal and ethical aspects of large pedigree research. ○ Memo from ELSI director to ELSI mailing list. (Dec. 30, 1991). Seasonal update. ○ Testimony by Bernadine Healy before the subcommittee on government information, justice, and agriculture committee on government operations. (Oct. 17, 1991). Hearing on the possible uses and misuses of genetic information. Cook-Deegan Box 8/9
○ News: ELSI. (Nov. 1991). The NIH clinical studies of testing, education, and counseling for cystic fibrosis mutations. ○ Article: Eric Juengst [and] James Watson. (1991). Human genome research and the responsible use of new genetic knowledge. Jal Intern. Bioé, 2(2) ○ Article: Eric Juengst. (Jan. 26, 1990). Ethical, legal and social implications of the human genome initiative. NIH Guide to Grants and Contracts, 19(4). ○ Guide: NIH. (Nov. 1991). Program on the Ethical, legal, and social implications of human genome research: A guide for applicants. ○ Letter from Norio Fujiki to Cook-Deegan. Invitation for a Second Bioethics Seminar in Fukui: Seminar on Ethical, Legal, and Social Issues Raised on Human Genome Research. ○ Memo from Cook-Deegan to Norio Fujiki. (Dec. 31, 1991). March meeting in Fujiki. ○ Memo from ELSI Director to ELSI working group members. (Dec. 11, 1991). Next meeting postponed. ○ Report: Council on Ethical and Judicial Affairs, American Medical Association. (Oct. 2, 1991). Use of genetic testing by employers. JAMA, 266(13). ○ Memo from Michael Yesley to Eric Juengst. Genetic Privacy collaboration. ○ Agenda for NIH-DOE ELSI working group meeting Feb. 10, 1992. ○ Agenda for NIH-DOE ELSI working group meeting Feb. 10, 1992. ○ Possible ELSI working group schedule for remainder of phase I. ○ ELSI’s genome. (diagram) ○ Possible ELSI working group schedule for remainder of phase I. ○ Agenda for NIH-DOE ELSI working group meeting Feb. 10, 1992. ○ Proposed topics for “core concepts” papers. ○ Report: ELSI. (March 18, 1991). Summary of the education consultation. ○ Report: NIH. (Draft Jan. 21, 1992). Reproductive Genetic Testing: Impact on women. ○ Attendance list for conference on the Ethical and Legal Implications of large pedigree research. (as of Feb. 3, 1992). ○ Report: NCHGR Education Projects. ○ Article: DOE Competition for awards on ethical, legal, and social issues studies concerning the human genome program. ○ Memo from ELSI director to NIH-DOE ELSI working group. (Jan. 29, 1992). February 10 meeting. ○ Article: Gail Geller [and] Neil A. Holtzman. (1991). Implications of the human genome initiative for the primary care physician. Bioethics, 5(4). ○ Report: summary of issues discussed [possible uses and misuses of genetic information hearing]. (Oct. 17, 1991). ○ Testimony by Bernadine Healy before the subcommittee on government information, justice, and agriculture committee on government operations. (Oct. 17, 1991). Hearing on the possible uses and misuses of genetic information. Cook-Deegan Box 8/9
○ Article: Eric Juengst. (Oct. 2m 1991). Priorites in pprofessional ethics and social policy for human genetics. JAMA, 266(13). ○ News: David Brown. (Oct. 20, 1991). Individual genetic privacy’ seen as threatened. The Washington Post. ○ Article: Council on Ethical and Judicial Affairs, American Medical Association. (Oct. 2, 1991). JAMA, 266(13). ○ Guide: Commission of the European Communities. Human genome analysis: Studies on the ethical, social and legal aspects: Guide to applicants. ○ Guide: FBI. (Nov. 1991). Legislative guidelines for DNA databases. ○ Article: University of Michigan Human Genome Center. (1992). Early-onset familial breast cancer. Genome, 2. ○ Memo from ELSI director to ELSI working group members and guest. (Feb. 4, 1992). February 10 workshop materials. ○ Memo from ELSI program analyst to ELSI working group meeting attendees. (Feb. 4, 1991). Logistics for Feb 10 meeting. ○ Agenda for reproductive genetic testing: Impact on women. ○ Memo from Jane Fullarton [and] Cook-Deegan to Eric Juengst, David Shore, Kate Berg, Charles McCarthy [and] Joan Porter. (Feb. 4, 1992). Summary of 27 January meeting. ○ Report: NIH. (Draft Jan. 31, 1992). Reproductive genetic testing: impact on women. ○ Report: NIH. Summary from the planning meeting of the cystic fibrosis studies consortium. ○ Article: NIH. (Nov. 1991). The NIH Clinical Studies of Testing, Education and Counseling for Cystic Fibrosis mutations. ○ Report: Task force on genetics and insurance. Interim Report. ○ Letter (sample) from Mark S. Frankel [and] Albert H. Teich to Large Pedigree Researcher. ○ Article: National Center for human Genome research. (Dec. 12, 1991). Individual postdoctoral and senior fellowships in genomic analysis and technology and the ethical, legal and social implications of human genome research. NIH Guide to Grants and Contracts, 20(46). ○ Article: University of Michigan Human Genome Center. (1992). Early-onset of familial breast cancer. Genome, 2. ○ Report: Recommendations on predictive testing for germ line P53 mutations among healthy individuals. (draft Feb. 7, 1992). Unfiled ● Letter from Albert H. Teich to Paul R. Billings. (Oct. 31, 1991). ● Memo from Al Teich [and] Mark Frankel to advisory committee members. (Sept. 17, 1991). Results of September 7 advisory committee meeting.
Cook-Deegan Box 8/9
Folder 3 ● Memo from Al Teich [and] Mark Frankel to conference on ethical and legal aspects of large pedigree genetic research participants. (Feb. 28, 1992). Conference Arrangements. ● Letter from Teich [and] Mark Frankel to Cook-Deegan. (Dec. 4, 1991). ● Memo from Cook-Deegan to Al Teich, Mark Frankel, Deborah Runkel, [and] Elizabeth Broughman. (March 9, 1992). Questions for this weekend’s discussion. ● Report: Institute of Medicine. Summary of a mtg on Jan. 27, 1992.
Folder 4 (AAAS Sci/ Law Genetic testing project ● Letter from Albert Teich to Cook-Deegan. (Dec. 3, 1992). ● Memo from Albert Teich [and] Mark Frankel to AAAS/ABA conference on Frontier issues in Ethics, law and genetic testing. (Feb. 23, 1993). Review of Conference papers. ● Memo from Albert Teich [and] Mark Frankel to AAAS/ABA conference on Frontier issues in Ethics, law and genetic testing. (June 10, 1993). Review of Conference Publication; Timely Response Requested. ● Memo from Cook-Deegan to Mark Frankel, Al Teich [and] Alta Charo. (March 8, 1993). Draft commentary on Shinn and Charo articles. ● Letter from Kate H. Murashige to Cook-Deegan. (March 17, 1993). ● Notes ● Memo from Cook-Deegan to Al Teich, Mark Frankel, and other AAAD Staff. (Oct. 7, 1991). Addendum to memo of last week. ● Memo from Al Teich to Files. (July 22, 1991). Conversation with Sheila Jasanoff re: Draft Genetic Testing Report and Advisory committee plans. ● Letter from Bruce Tonn to Al Teich [and] Mark Frankel. (July 26, 1991). ● Memo from Al Teich [and] Mark Frankel to AAAS-ABA conference participants. (May 31, 1991). Commissioned papers and last-minute items. ● Agenda for AAAS Conference ● Memo from Cook-Deegan to Mark Frankel [and] Al Teich. (Dec. 13, 1990). Ethical and legal implications of genetic testing procedures. ● Memo from Albert Teich [and] Mark Frankel to advisory committee. (Dec. 5, 1990). First Conference site, dates, and participants. ● Memo from Cook-Deegan to Mark Frankel. (Feb. 13, 1991). Robertson outline on legal issues. ● Letter from John A. Robertson to Mark Frankel. Outline for the paper on legal issues in genetic testing. ● Memo from Albert Teich [and] Mark Frankel to advisory committee. (July 5, 1990). Supplemental Proposal Response. ● Memo from Deborah Runkle to Genetic testing project advisory committee. (Feb. 20, 1991). Review of Murray’s Draft Outline. Cook-Deegan Box 8/9
● Memo from Albert Teich [and] Mark Frankel to Genetic testing project advisory committee. (April 22, 1991). ● Roster for AAAS conference ● Agenda for conference on Ethical and Legal Implications of Genetic Testing ● Memo from Deborah Runkle to Genetic testing project advisory committee. (April 8, 1991). Review of Billing’s Draft Outline. ● Report: The Scientific Basis of genetic screening: A Review. (March 27, 1991). ● Memo from Cook-Deegan to Elizabeth Broughman. (June 17, 1991). Expenses for Coolfront meeting. ● Memo from Cook-Deegan to Audrey Chapman. (June 17, 1991). Much traveled memo to AIUSA board. ● Memo from Al Teich and Mark Frankel to Genetic testing project advisory committee. (July 17, 1991). Project Update and Advisory committee meeting. ● Memo from Al Teich [and] Mark Frankel to Genetic testing project advisory committee. (August 14, 1991). Thank you and update.
American Association for the Advancement of Science Conference (June 14-16 1991) ● List of observers ● Speaker biography (Michael Wright) ● Speaker biography (LeRoy Walters) ● Speaker biographies ( Margaret Anderson, Bob Bier, Audrey Chapman, Deborah Chollet, Robert Cook-Deegan, Lorrain Flaherty, Ellen Flannery, Mark Frankel, Jane Fullarton, Ruth Greenstein, Mark Hall, John Hicks, Neil Holtzman, Arthur Horwich, Eric Juengst, Phyllis L. Kahn, Lee Loevinger, Mary Mahowald, Richard Meserve, Thomas Murray, James Nash, Gilbert Omenn, Kimberly Quaid, Deborah Runkle, Paul Silverman, Irene Stith-Coleman, Laurence Tancredi, Albert Teich, Martha Volner, Victor Weedn, Bruce Wilder, Steven Zimmerman) ● Memo from Cook-Deegan to Al Teich [and] Mark Frankel. (August 1, 1991). Legal and ethical implications of genetic testing (marked copy of Tammy’s draft meeting report) ● Agenda for the conference ● List of participants
Cook-Deegan Box 8/9
American Association for the Advancement of Science Conference (March 13-15, 1992) ● Left Sleeve ○ National Depressive and Maniac-Depressive Association. The National DMDA bookstore: 1991’92 Literature and Tape Catalogue. ○ Annas, G.J. (1990). Emory University School of Law: Emory Law Journal: Mapping the Human Genome and the Meaning of Monster Mythology, 39 (3). ○ Description of Depressive and Maniac-Depressive Disorders. National Depressive and Maniac-Depressive Association. ○ Guide: Conference on Ethical and Legal Aspects of Large Pedigree Genetic Research: Discussion Group Questions. ○ Attendance List ○ Agenda ○ Discussion Groups. ○ Transcript of AAAS meeting, 3/13-15, 1992. ○ Letter from Dorene Markel to Cook-Deegan. (February 17, 1992). ● Right Sleeve ○ Notes from the meeting ○ Excerpts: George Annas. (1992). Rules for Gene Banks. ○ Consent forms ○ Guide: Johns Hopkins Genetic Linkage Study of Bipolar I Affective Disorder ○ Report: David L. Nelson. 1992. Fragile X. Syndrome: Legal/ Ethical Issues Arising from Recent Findings. ○ Biographies
Cook-Deegan Box 8/9
Folder 7 ● NIH-DOE ELSI working group folder ○ Left Sleeve ■ Memo from Eric Juengst to ELSI working group members. (Aug 28, 1991). Long Range Scheduling for the ELSI working group ■ Memo from ELSI program analyst to ELSI working group members. (Sept. 5, 1991). Reading material for upcoming workshop. ■ Memo from ELSI program director to ELSI working group member. (Aug. 29, 1991). Sept. 11-12 meeting and workshop ■ Notes ■ Agenda ■ Letter from Michael Yesley to Cook-Deegan. ○ Right Sleeve ■ Participant list ■ Agenda ● Letter from Nancy Wexler to ELSI working group members. ○ Draft program ○ Article: Peter Aldhous. (June 13, 1991).Who needs a genome ethics treaty? Nature, 351(13). ○ Article: Marlene Cimons. (Feb. 10, 1991). All in the family: Using families as laboratories, doctors are searching for clues to cancer and other deadly diseases. Los Angeles Times Magazine. ○ Article: Nancy Wexler. (Feb 10, 1991). Life in the lab. Los Angeles Times Magazine. ○ Correspondence: William E. Seidelman. (Jan. 26, 1989). Lessons from eugenic history. Nature, 337(26). ○ Article: George Cunningham. (1990). Genetic screening: From newborns to DNA typing. ○ Article: Lori Andrews. (1990). Genetic screening: From newborns to DNA typing. ○ Article: John Maddox. (1989). The case for the human genome. Nature, 352. ○ Article: Sandra N. Hurd. (1990). Genetic testing: Your genes and your job. Employee Responsibilities and Rights Journal, 3(4). ○ Memo from ELSI program analyst to ELSI working group members. (Aug 9, 1991). Update. ○ Article: Alexander Dorozynski. (April 19, 1991). Privacy Rules Blindside French Glaucoma Effort. Science, 252. ○ News: Committee on government operations. (May 3, 1991). Conyers introduces genetic privacy act. One Hundred Second Congress, Congress of the U.S. House of Representatives. nd ○ Report: Legi-slate report for the 102 congress. Bill text report for H.R. 2045. Cook-Deegan Box 8/9
○ Article: Myriam Charbonneau, Claude Laberge, Charles Scriver, Jean H. Dussault, Bernard Lemieux, [and] Serge Melancon. (1987). The Quebec Network of Genetic Medicine. Canadian Journal of Public Health, 78. ○ (Feb 26, 1991). Part V Equal Employment Opportunity Commission. Federal Register, 56(144) ○ Memo from Kristin Kiser to Helen Simon [and] Susan Crandell. (Aug 22, 1991). Hearing on H.R. 2045, the Human Genome Privacy Act. ○ Report: ELSI. Grant-making status report, August 1991. ○ Article: ELSI. (1991). Statement of the Joint Working group. ○ Minutes of Planning meeting for Sept. 11-12 workshop. ○ Letter from Rob Bier to Cook-Deegan. (June 19, 1991). ○ Article: Glenn Kramon. (1991). Medical insurers vary fees to aid healthier people. NY times. ○ News: Outlook: (1991). Commentary and Opinion. The Washington Post. ○ Articles: Sarah Henry. (1991). Redlining people with AIDS. The Nation. ○ Memo from Eric Juengst to ELSI working group members. (October 10, 1991). ○ Roster [committee on predicting future disease: issues in the development, application and use of tests for genetic disorders]. ○ News: Peter Aldhouse. (1991). California tackles insurance. Nature. ○ Letter from Bob Williamson to Nancy Wexler. (August 23, 1991). Proofs for paper. ○ Letter from Cook-Deegan and Paul Billings. (October 7, 1991). ○ Letter from Cook-Deegan and Paul Billings. (October 7, 1991). ○ Opinion: Paul Billings. (1991). Beware of insurers offering tests. San Francisco examiner. ○ Article: Lisa Krieger. (1991). Cases of genetic discrimination on the rise. San Francisco Examiner. ○ Article: Joyce Frieden. (1991). Genetic testing: What will it mean for health insurance? Business and Health. ○ Roger J. Bulger. (1991). How the Genome Project could destroy health insurance. The Washington Post. Cook-Deegan Box 9/9
Folder 1 (NCURA 11/8/94 Hyatt Conf Hotel ● Memo from Perrie Adams to Cook-Deegan. (Nov. 3, 1994). MCURA meeting ● Letter from Perrie Adams to Cook-Deegan. (Sept. 30, 1994). ● Letter from Perrie Adams to Cook-Deegan. (June 28, 1994).
Folder 2 (ELSI relevant materials Feb-April, 1990) ● Letter from James Vennetti to Cook-Deegan. (August 22, 1990). ● Memo from Cook-Deegan to Eric Juengst. (August 25, 1990). Review of IOM contract proposal 90-233b. nd ● Minutes of the NIH-DOE working group on ELSI [2 mtg, Williamsburg, VA Feb. 6, 1990]. ● Letter from Leslie Fink to Cook-Deegan. (April 3, 1990). ● Summary (draft) of first workshop of the joint working group on ELSI [Williamsburg, VA, Feb. 5-6, 1990]. ● Statement from the NIH workshop on population screening for the cystic fibrosis gene. (March 6, 1990). ● Article: Robert Plomin. (April 13, 1990). The role of inheritance in behavior. Science, 248. ● J.C. Chapple, R. Dale, & B.G. Evans. (May 23, 1987). Screening for disease. The Lancet. ● Proposal for the Beckman Center Program. (Draft) ● Memo from Kathi E. Hanna to Cook-Deegan. (Feb 27). ○ For Action New Project ● News: Eric Juengst. (Feb. 1990). The Power of Prediction. Perspectives from the Humanities, 2(6). ● Article: N. Fujiki. Bioethical considerations concerning the clinical application of human genetic knowledge. ● Memo from Eric Juengst and Cook-Deegan to Jim Watson. (July 9, 1990). Genetic tests and private insurance. ● News: David Stipp. (July 9, 1990). Genetic testing may mark some people as undesirable to employers, insurers. Wall Street Journal. ● Article: Mark A. Rothstein. Legal and ethical issues in the laboratory assessment of genetic susceptibility to cancer. ● Letter from Benno Müller-Hill to James Watson. (June 7, 1990). ○ Report: Benno Müller-Hill. Lessons from Eugenics and Racial Hygiene. ● Letter from Santiago Grisolialjer to James Watson. (June 4, 1990). ● Letter from Benno Müller-Hill to James Watson. (June 7, 1990). ○ Report: Benno Müller-Hill. Lessons from Eugenics and Racial Hygiene. ● Letter from J. Robert Nelson to Nancy Wexler. (April 4, 1990), ● Memo from Cook-Deegan to Elke Jordan, Mark Guyer, Bettie Graham, & Eric Juengst. ( April 12, 1990). BSSC High School curriculum project on human genome project. ● Article: Benjamin S Wilfond & Norman Fost. (May 23/30, 1990). The cystic fibrosis gene: Medical and social implications for heterozygote detection. JAMA, 263(20). Cook-Deegan Box 9/9
● Report: Benjamin S Wilfond & Norman Fost. The cystic fibrosis gene: Medical and social implications for heterozygote detection ● Correspondence between Charles Dougherty and Cook-Deegan. (April 23, 1990 & April 28, 1990). ● Memo from Cook-Deegan to self. (April 13, 1990). Things we need to do for the ethical, social, and legal issues working group. ● Letter from Victor McKusick to Eric Juengst. (March 26, 1990). ● Article: Cecile Holmes White. (March 2, 1990). Genetics and ethics. Houston Chronicle.
Folder 3 (ELSI WG mtg, Los Alamos 29-30 April (ADA rec to EEOC). ● Fax from Eric Juengst to Cook-Deegan. ○ News: Peter Aldhous. (June 27, 1991). Congress reviews DNA testing. Nature, 351. ○ News: Peter Aldhous. (June 27, 1991). Closing a loophole in discrimination rules. Nature, 351. ○ Letter from Paul Berg to Evan Kemp. (July 20, 1991). ● Article: Equal employment opportunity commission. ( Feb. 28, 1991). Equal employment opportunity for individuals with disabilities; Notice of proposed rulemaking. Federal Register, 56(40). ● Agenda for NIH-DOE ELSI working group meeting V.
Folder 4 (CF testing) ● Resolution from the NCHGR Program Advisory committee on the Human Genome. (Dec. 3, 1990). ● Meeting Summary [workshop on clinical studies of cystic fibrosis carrier testing on Jan. 31, 1991] ● Meeting summary [workshop on the introduction of new genetic tests on Sept. 10, 1990] ● Guidelines: Request for applicants: Studies of testing and counseling for cystic fibrosis mutations] ● Memo from Eric Juengst to participants along the way to the NIH of CF testing studies initiative. (Oct. 9, 1991). ● Memo from Elaine Lawson to Cook-Deegan. Cystic Fibrosis Studies consortium planning meeting. Nov. 1, 1991. ● Article: C. Thomas CAskey, Michale Kaback, & Arthur Beaudet. The American Society of Human Genetics Statement on Cystic Fibrosis. (Nov. 13, 1989). American Human Genetics, 46,(393). ● Statement from the NIH workshop on population screening for the cystic fibrosis gene. (March 6, 1990). ● Article: Keith Hammon, Steven Abman, Ronald Sokol, & Frank Accurso. (Sept. 12, 1991). Efficacy of statement nonatal screening for cystic fibrosis by assay of trypsinogen concentrations. New England Journal of Medicine, 325(11). Cook-Deegan Box 9/9
● Article: Neil Holtzman. (Sept. 12, 1991). Inpatient treatment of alcoholism- New life for the Minneapolis plan. New England Journal of Medicine, 325(11). ● Guide: Genetics & IVF Institute. Prenatal counseling overview information for patients.
Folder 5 ( ADA-ELSI) ● Memo from Francis Collins to members of the NIH-DOE ELSI working group. (Jan. 14, 1993). NIH-DOE ELSI working group statement on employment discrimination--- ACTION ● Memo from Cook-Deegan to Francis Collins via Eric Juengst, Nancy Wexler, Mark Rothstein, Marsha Saxton, & Michael Yesley. (Dec. 22, 1993). ADA background documents. ● Report: Mark Rothstein. (April 15, 1991). Comments on Proposed Regulations to implement the Equal Employment Provisions of the Americans with Disability Act. ● Letter from Paul Berg to Evan Kemp. (July 10, 1991). ● Letter from Cook-Deegan to Alexander Capron. (Aug. 15, 1990). Letter from Steny Hoyer. ● Report: United Cerebral Palsy Associations. (April 11, 1991). Preliminary comments on Health insurance in proposed regulations to implement the Equal Employment provisions of the Americans with Disability Act. White Binder (Interdisplinary Colloquy on Genetic Predisposition) ● Letter from Nancy Wexler to Francis Collins. (Aug. 16, 1994). ● Interdisplinary colloquy participants ● NIH-DOE joint ELSI working group participants ● Conference description ● Statements ● Article: Keller. Genetics, reductionism, and the normative uses of biological information: Reponses to Kevles. Southern California Law Review, 65(285). ● Article: Rochelle Dreyfuss & Dorothy Nelkin. (March 1992). The Jurisprudence of Genetics. Vanderbilt Law Review, 45(2). ● Article: Richard Strohman. (1993). Ancient Genomes, wise bodies, unhealthy people: Limits of a genetic paradigm in biology and medicine. Perspectives in Biology and Medicine, 37(1). ● Article: H.G. Brunner, M.R. Nelen, P. van Zanfvoort, N.G.G.M. Abeling, A.H. van Gennip, E.C. Wolters, M.A. Kuiper, H.H. Ropers, & B.A. van Oost. (1993). X-linked boarderline mental retardation with prominent behavioral disturbance: Phenotype, genetic localization, and evidence for disturbed monoamine metabolism. American Journal of Human Genetics, 52. ● Article: Simon LeVay & Dean H. Hamer. ( May 1994). Evidence for a biological influence in male homosexuality. Scientific American. ● Report: Susan Mahler. Genetic predisposition and the Courts: Legal fact or science fiction? ● News: Rhonda Hillberry. (May 1, 1994). Scholars say ‘genetic predisposition’ doesn’t dictate the form of the family. Minneapolis Star Tribune. ● Article: Robert Wachbroit. (1994). Distinguishing Genetic Disease and Genetic Susceptibility. American Journal of Medical Genetics, 53. Cook-Deegan Box 9/9
Folder 6 (ELSI 4/29-30/91 mtg, Los Alamos ● Report: Bernard Gert. Moral Thoey and the Genome Project. ● Report: Jon Beckwith. Relationship of ELSI to Human Genome Research. ● Report: Paul Billings, Jonathan Beckwith, & Joseph S. Alper. The Genetic Analysis of Human Behavior: A new era? ● Letter from Jon Beckwith to Cook-Deegan. (April 10, 1991). ● Memo from Lori Andrews to ELSI working group members. (April 26, 1991). Questions to aid in developing genetic confidentiality policies. ● Memo from Lori Andrews to ELSI working group members. (April 10, 1991). Genetic confidentiality. ● Memo from Cook-Deegan to Nancy Wexler. (June 24, 1991). ● Article: Robert A. Weinberg. (April 1991). Technology Review. ● Roster for ELSI working group ● List of participants ● Memo from Michael Yesley to NIH-DOE ELSI working group members. (April 125, 1991). Additional reading materials for april meeting of the ELSI working group. ● Tourette Syndrome Association brochures ● Report: Michael Yesley. Bibliography: ELSI of the human genome project. ● Report: Madison Powers. Legal protections of confidential medical information and the need for anti-discrimination laws. ● Memo from Tom Murray to ELSI members. (April 11, 1991). ELSI members. ● Letter from Thomas Murray to Cook-Deegan. (April 8, 1991). ● Letter from Elinor LAngfelder to Cook-Deegan. (April 8, 1991). ○ Program on the ELSI of Human Genome Research: A guide for Applicants