Bioethics Research Library The Joseph and Rose Kennedy Institute of Ethics bioethics.georgetown.edu A Guide to the Archival Collection of The Robert Cook-Deegan Human Genome Archive Set 3 April, 2013 Bioethics Research Library Joseph and Rose Kennedy Institute of Ethics Georgetown University Washington, D.C. Overview The Robert Cook-Deegan Human Genome Archive is founded on the bibliography of The Gene Wars: Science, Politics, and the Human Genome. The archive encompasses both physical and digital materials related to The Human Genome Project (HGP) and includes correspondence, government reports, background information, and oral histories from prominent participants in the project. Hosted by the Bioethics Research Library at Georgetown University the archive is comprised of 20.85 linear feet of materials currently and is expected to grow as new materials are processed and added to the collection. Most of the materials comprising the archive were obtained between the years 1986 and 1994. However, several of the documents are dated earlier. Introduction This box listing was created in order to assist the Bioethics Research Library in its digitization effort for the archive and is being shared as a resource to our patrons to assist in their use of the collection. The archive consists of 44 separate archive boxes broken down into three separate sets. Set one is comprised of nine boxes, set two is comprised of seven boxes, and set three is comprised of 28 boxes. Each set corresponds to a distinct addition to the collection in the order in which they were given to the library. No value should be placed on the importance of any given set, or the order the boxes are in, as each was accessed, processed, and kept in the order in which they were received. Every effort was made to maintain the integrity of the boxes in the order they were processed. Except in cases of damage and materials that were oversized that required special processing the materials have been kept in the exact order that the Bioethics Research Library received them in. In addition, every effort was made to be faithful to the headings and labeling of the materials in the collection. If a folder, binder, or packet did not have a specific label identifying it generic labels were added to assist in processing. For example, a folder with no identifying label is identified as Folder 1 in the box listing. Any additional unlabeled folders in the same box follow a sequential pattern, i.e. Folder 2, Folder 3, etc. Each individual box holds to this pattern. This means there are multiple folders with the heading of Folder 1. Thus when citing an unlabeled item it is important to use the exact set and box number in order to locate that item. For example, Set 2, Box 6, Folder 2. Also note that every effort was made to properly title individual items. In many cases, especially with correspondence and memos, there is not a specific title associated with that item. For clarity sakes these items are labeled as being from a specific person or department to another specific person or department. In cases where no title or author was present the first line of the document was used as a title. Each set has a separate box listing. It is expected that researchers and scholars using the collection will need to search in each set’s listing in order to locate relevant materials. Each set is completely text searchable to aid in this process. It is highly suggested that researcher use the find feature (control + f in most applications) in order to aid in the use of the box listing. Each set’s box listing comprises dozens of pages and in the case of set three the document alone is 157 pages long. A presence for the archive has been established on the Bioethics Research Library and can be accessed by visiting https://bioethics.georgetown.edu/library-materials/digital-collections/robert- cook-deegan-human-genome-archive/ On this page you will find links to the full version of The Gene Wars, information linking to other websites that are working on preserving the history of the Human Genome Project, and links to digital reproductions of items from the collection created by the Bioethics Research Library. A permanent link to this series of guides will also be maintained on Digital Georgetown: Set 1 - http://hdl.handle.net/10822/708922 Set 2 - http://hdl.handle.net/10822/708923 Set 3 - http://hdl.handle.net/10822/708925 Updated April 17, 2014 CNN Acknowledgements This guide would not have been possible without the significant assistance of several people. First and foremost is Laura Ruth Barry whose able support, creativity and tireless efforts in wrangling both the physical collection and the data to create this guide cannot properly be conveyed in words. Georgetown University students were integral in processing the materials on an item level basis. Jennifer Young, Joseph Wiedemer, Jade Walsh, Rebecca Kruser, Ta-Chueh Melody Hsu, Mary Laura Scalise, Rachel Cox, and John Sperry Nickerson. Without their assistance this project would have been stuck in neutral. Anita Nolen, former archivist at the Bioethics Research Library, who first received and accessed the materials 20 years ago when they were first donated. She left the collection in such amazing shape that starting the process of digitizing and making the collection available to a larger audience was considerably eased. She also let a young preservationist pick her brain and play in her toy box. It was greatly appreciated. Mark Hakkarinen who listened, advised, and help push on days when the work seemed overwhelming. Martina Darragh, Patty Martin, and Roxie France-Nurriden, my “team” (which should really read that I am part of their team), not enough can be said for all the patience, teaching, and support you have offered me. Thank you. Of course I’d also like to thank Dr. Robert Cook-Deegan who answered innumerable questions, made invaluable suggestions, and showed flexibility (and still does so) in how to approach the project. Last, but not least, I would like to thank all my former and current colleagues at the Kennedy Institute of Ethics and Bioethics Research Library for creating an atmosphere where knowledge and the preservation and access to that knowledge is always strived for. I am not sure where else in the world where so many different people consistently strive to ensure that knowledge is shared freely and without concern of who benefits most from that information. It is truly inspiring. Thank you all, Nat Norton 4/10/2014 The Robert Cook-Deegan Human Genome Project Archive Set 3 Box Listing Cook-Deegan Box 1/28 ESLA concern in Europe & Japan ● Article: “Japan Faces Big Task in Improving Basic Science.” Science, vol. 243. (10 March 1989). ○ Article: “France Introduces Bioethics Law.” Science, vol. 243. (10 March 1989). ● Report: “Lessons from the Past: Prospects for the Future. The Human Genome Project and The Social Contract: a Law Policy Approach.” Judge C. Byk ● Letter: from Judge C. Byk. (20 May 1989). ○ Questionnaire concerning the ethical and legal problems raised by the mapping of the human genome ● Letter: from Cook-Deegan to Judge Byk. (14 July 1989). Answering questionnaire. ● Letter: from Prof. Benno Müller-Hill to Dr. James D. Watson. (7 June 1990). Regarding HUGO and Valencia Workshop. ○ Abstract: Lessons from Eugenics and Racial Hygiene. Benno Müller-Hill. ○ Position paper: Bioscience in Totalitarian Regimes: The Lesson to be learned from Nazi Germany. Benno Müller-Hill. For Dahlem Conference, Nov. 25-30, Berlin. ● Letter: from C. Thomas Caskey to Cook-Deegan. (17 June 1988). Regarding Sixth Boehringer Ingelheim conference on “Social Consequences of Genetic Engineering.” ● Program: Sixth Boehringer Symposium. “Social Consequences of Genetic Engineering.” (June 12-14 1988). ● Letter: from Judge C. Byk to Roger C. Herdman. (31 May 1989). Requesting copies of OTA materials. ● Letter: from Dr. Gerhard Wolff to Cook-Deegan. Sending copies of the two statements of the Commission for Public Matters and Ethical Questions, copy of the new German gene technology law. ○ Report: Erklärung der Gesellschaft für Humangenetik (04.12.1989) ○ Report: Erklärung der Gesellschaft für Humangenetik (08.04.1989) ○ Report: Bundesgesetzblatt (June 1990). ● Letter: from Celeste Michelle Condit to Cook-Deegan. Requesting transcripts of scientific conferences addressing ethical and social implications of the Genome Project. (5 Sept. 1990). ● Letter: from Judge C. Byk to Cook-Deegan. Sending copy of address to the Valencia Workshop. (19 Nov. 1990). ● Names and contact info, “Study Group on Ethical, Social, and Legal Aspects of the Human Genome Analysis Working Party.” Brussels. (14 July 1989). ○ List of Chairmen and Speakers, “Symposium on Human Genome Research: Strategies and Priorities.” (29-31 January 1990). UNESCO Headquarters, Paris. ○ Tentative List of Participants, “Unesco Scientific Co-ordinating Committee (SCC) First Meeting.” (1 Feb. 1990). Cook-Deegan Box 1/28 Unnamed Folder 1 ● Transcript: “Impact of the New Biotechnology Products on Individuals and the Environment: Genetic Testing/Gene Therapy.” Thomas Murray. (5/12/88). ● Report: “Proceedings of the Fourth Annual Lawrence Hall of Science High School Science Symposium on Science and Societal Issues.” (1989). ● Article: “Bad Luck Insurance.” Nature, vol. 347. (20 Sept. 199?) ● Article: “Letting the genome out of the bottle: the ethics of human genetic research.” Faye Sholiton. Cleveland Jewish News, vol. 53, no. 17. (20 July 1990). ● Article: “Genetics-Based Testing Could Create a Biologic Underclass.” The Scientist. (27 Nov. 1989). ○ [Continuation of article]: “New Biologic Tests Pose a Threat to Privacy.” The Scientist. (27 Nov. 1989). ● Article: “Genes reach the medical market.” Christopher Joyce. New Scientist. (16 July 1987). ● Article: “Genetic Testing May Mark some People as Undesirable to Employers, Insurers.” David Stipp.