Association For Molecular Pathology et al v. United States Patent and Trademark Office et al

Filing 227

DECLARATION of Robert Cook-Deegan in Opposition re: 175 MOTION for Judgment on the Pleadings., 152 MOTION for Summary Judgment.. Document filed by American Society For Clinical Pathology, College of American Pathologists, Association For Molecular Pathology, Haig Kazazian, Arupa Ganguly, Wendy Chung, Harry Ostrer, David Ledbetter, Stephen Warren, Ellen Matloff, Elsa Reich, Breast Cancer Action, Boston Women's Health Book Collective, American College of Medical Genetics, Lisbeth Ceriani, Runi Limary, Genae Girard, Patrice Fortune, Vicky Thomason, Kathleen Raker. (Attachments: # 1 Exhibit 1, # 2 Exhibit 2)(Hansen, Christopher)

Association For Molecular Pathology et al v. United States Patent and Trademark Office et al

Doc. 227 Att. 1

EXHIBIT 1

Dockets.Justia.com

Curriculum Vitae Robert Mullan Cook-Deegan, MD
Duke University, Box 90141, Durham, NC 27708-0141 Phone [phone], Fax [phone] [e-mail] Current Position Director, Center for Genome Ethics, Law & Policy, Institute for Genome Sciences & Policy, Duke University Education B.A. M.D. Harvard College, chemistry, magna cum laude, 1975 University of Colorado, 1979

Academic Positions Research Professor of Public Policy, Sanford School of Public Policy, Duke University, 2003present Research Professor, Department of Medicine, Duke University Medical Center, 2003-present Research Professor, Department of Biology, Duke University, 2006-present Faculty Associate, Kennedy Institute of Ethics, Georgetown University, 2001-present; Senior Research Fellow, 1986-2001 Seminar Director, Stanford-in-Washington (undergraduate tutorials and seminars on health and biomedical research policy), 1996-2003 Cecil and Ida Green Senior Fellow, Green Center for the Study of Science and Society, University of Texas, Dallas, February-April 1996 Associate, Department of Health Policy and Management, School of Hygiene and Public Health, The Johns Hopkins University, 1988-2001 Student thesis supervision Graduate Student Supervisor (Duke University) Erin McCarthy, MPP candidate, Nov 2009-May 2010 (Anthony So, chair) Lisa Warner, Biology PhD Candidate, 2008-Present (Gregory Wray, chair) Jeremy Block, Biochemistry PhD candidate, MPP project 2008-2009 (chair of MPP) Matthew DeCamp, Philosophy PhD, July 2002-May 2007 (MD 2008; co-chair for PhD committee with Allen Buchanan) Elana Fric-Shamji, MPP (already had her MD), May 2007-May 2008 (chair of MPP) Deirdre Parsons, MS in Molecular Genetics & Microbiology, May-December 2007 (Hunt Willard, chair) Eric Hoefer, MPP, MBA, Jan-May 2004 Noah Perin, MPP, MBA, Jan-May 2005 Charles Matthews, MPP, Jan-May 2004 Undergraduate Thesis Supervisor (Duke University) Samantha Pearlman, May 2010 (Public Policy Studies, expected) Shreya Prasad, May 2010 (International Comparative Studies, expected) Swathi Padmanabhan, May 2010 (Public Policy Studies, graduation with distinction) Matthew Piehl, May 2008 (Biology, graduation with distinction)

2 Sarah Wallace, December 2007 (Public Policy Studies, graduation with distinction) Catherine Alessandra Colaianni, May 2007 (Biology and Philosophy, graduation with distinction) Joe Fore, December 2006 (Public Policy Studies, graduation with distinction) Daidree Tofano, May 2006 (Program II, graduation with distinction) Nonacademic Positions Office of Technology Assessment, U.S. Congress, Washington, DC. OTA Fellow 1982-3, Project Director and Analyst 1983-4, Senior Analyst 1985-6, Senior Associate 1987-1988 Biomedical Ethics Board, U.S. Congress, and Biomedical Ethics Advisory Committee, Washington, DC, 1988-1989. Acting Executive Director (this was a small congressional agency that operated for one year) National Center for Human Genome Research, National Institutes of Health, Expert (consultant to Center Director, James D. Watson) 1989-1990 National Academy of Sciences, Washington, DC. Director, Division of Biobehavioral Sciences and Mental Disorders, Institute of Medicine, 1991-1994; Senior Program Officer, Committee on Allocation of Federal Funds for Science and Technology ("Press Report"), 1994-1996; Director, National Cancer Policy Board, National Research Council and Institute of Medicine, 1996-2000; Senior Program Officer, Committee on Human Research Protection Programs, 2000; Director, Robert Wood Johnson Foundation Health Policy Fellowship Program, Institute of Medicine, 2001-2002 State, National and International Committees and Boards Member, AAAS Committee on Council Affairs, 2009-2010 Member, Committee on University Management of Intellectual Property, Board on Science, Technology and Economic Policy and Committee on Science, Technology and the Law, The National Academies, June 2008-February 2010 Council Delegate and Section X Nominating Committee, AAAS Section on Societal Impacts of Science and Engineering, 2007-Present Member, NAS-AAAS Committee on Assessing Fundamental Attitudes of Life Scientists as a Basis for Biosecurity Education, National Research Council Committee, 2007-2009 (Committee produced a report, A Survey of Attitudes and Actions on Dual Use Research in the Life Sciences: A Collaborative Effort of the National Research Council and the American Association for the Advancement of Science [Washington, D.C.: National Academies Press, 2009]) Member, Advisory Committee for the Graduate Student Forum on Science, Technology, and Health Policy, National Academies of Science and Engineering and Institute of Medicine, National Academy of Sciences, 2007-present Consultant, Gene Patents and Licensing Practices Task Force, Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS), Department of Health and Human Services, 2007-present Consultant, Chordoma Foundation, 2007-present Member, Task Force on Patent Reform, American Association of Universities, Association of American Medical Colleges, Council on Government Relations, American Council on Education, and Association of Public and Land-Grant Universities (APLA, formerly National Association of State Universities and Land Grant Colleges), 2005-Present

3 Member, Committee on Alternative Funding Strategies for Department of Defense's PeerReviewed Medical Research Programs, Institute of Medicine, January-May 2004 (Committee produced a report, Strategies to Leverage Research Funding [Washington, DC: National Academies Press]) Consultant, Comparative Approach to Genomics of Complex Traits, Department of Health and Human Services Grant, 2003-2004 Member, Project Advisory Panel on Reprogenetics: A Blueprint for Meaningful Moral Debate and Responsible Public Policy, The Hastings Center, 2001- 2003 (Report: Reprogenetics and Public Policy: Reflections and Recommendations by Erik Parens and Lori P. Knowles, Hastings Center Report Special Supplement, July/Aug 2003; book forthcoming from Johns Hopkins Press) Member, History and Health Policy Cluster Group, Robert Wood Johnson Foundation, 20032005 Member, Task Force for Genomics and Public Health, North Carolina Department of Health and Human Services Office of Genomics, 2002-2005 Member, Expert Advisory Panel, Accessible Genetics Research Ethics Education (AGREE) grant, US Department of Energy, 2002-2005 (J Sugarman­ Principal Investigator, The Johns Hopkins University) Member, Ethical Issues in the Management of Financial Conflicts of Interest in Research in Health, Medicine, and the Biomedical Sciences, The Hastings Center, 2002-2005 Coordinator, WHO Advisory Group on Genomics, 2000-2001 Chair, External Advisory Committee, REVEAL study (four-site clinical trial of ApoE genetic testing for Alzheimer's susceptibility, Robert Green­ Principal Investigator, Boston University), 2000-present Member, Working Group on Germ Line Gene Therapy, American Association for the Advancement of Science, 1998-2000 Member, Council for the American Association for the Advancement of Science 1998-1999 (as retiring chair of Section X) Trustee and Secretary, Foundation for Genetic Medicine, 1997-2003 Chair, National Academy of Sciences' Committee to Review Studies on Human Subjects (Institutional Review Board for the National Academies of Sciences and Engineering, the National Research Council, and the Institute of Medicine), 1997-2000 Chair, Section X (Societal Impacts of Science and Engineering), American Association for the Advancement of Science, 1997-1998 National Advisory Board and visiting faculty, Dartmouth College genome curriculum project, 1996-1998, 2000-2003 Advisory Committee, Human Genome Education Model, Project II: Collaborative Education for Allied Health Professionals, Alliance of Genetic Support Groups and Georgetown University, 1996-2002 Chair, Royalty Fund Advisory Committee, Alzheimer's Disease and Related Disorders Association (committee to oversee distribution of research funds derived from tacrine royalties) member 1994; chair 1995-present Participant, Committee on Science and Human Values, National Conference of Catholic Bishops, 1995-1999

4 Advisory Board, Science + Literacy for Health, Human Genome Project (advised on production of Your Genes, Your Choices: Exploring the Issues Raised by Genetic Research by Catherine Baker), American Association for the Advancement of Science, 1995-1997 Consultant, DNA Patent Database, Kennedy Institute of Ethics, Georgetown University, 19942004 Chair, National Panel workshop on international genomics, Office of Technology Assessment, US Congress, March 1994 Participant, workshop on commercial genomics and patenting DNA sequences, Office of Technology Assessment, US Congress, January 1994 Member, Advisory Panel on Commercializing Emerging Technologies, Office of Technology Assessment, US Congress, 1994-1995 Member, Advisory Panel on The Human Genome Project and DNA Patenting, Office of Technology Assessment, US Congress, 1993-1995 Founding member, the Dana Alliance on Brain Initiatives, Charles A. Dana Foundation, 1992present Joint Working Group on Ethical, Legal, and Social Issues, National Institutes of Health and Department of Energy, 1989-1995 Scientific Coordination Committee on the human genome to the Director General of the United Nations Educational, Scientific, and Cultural Organization (UNESCO), 1988-1991 Member, Technical Advisory Committee, Alzheimer's Medicare Demonstration, Mathematica Policy Research, Inc. (under contract to Health Care Financing Administration), 19871988 Member, National Advisory Committee, Robert Wood Johnson Foundation, Dementia Care and Respite Services Program, 1987-1991 Member ex officio, Human Gene Therapy Subcommittee, Recombinant DNA Advisory Committee, National Institutes of Health, Liaison member, 1987-1991 Member, Health Services Research Task Force, Alzheimer's Disease and Related Disorders Association (also executive committee), 1987-88 Honorary Board Member, Family Respite Center, Falls Church, Virginia, 1987-2000 National Advisory Board Member, Alzheimer's Research Center, Cleveland, Ohio, 1987-1990 National Coordinator, Health Professionals' Network, Amnesty International USA, 1985-1988; National Steering Committee 1988-1998 Board of Directors, Physicians for Human Rights, 1988-1996; Advisory Board, 1987-88; Treasurer and Executive Committee, 1994-1996; Co-chair, Fundraising Committee, 1994-1996 Duke University Service Faculty Committee, Genome Sciences & Policy Certificate Program, 2008-present Member, Baldwin Scholars Program Review, 2008-2009 Member, Peter Lange Provost Review Committee, 2007-2008 Member, Truman Scholarship faculty interview panel, 2007-present Member, Rhodes/Marshall/Mitchell Scholarship faculty interview panel, 2007-present Member, Fulbright Scholarship faculty interview panel, 2009-present Member, Executive Committee, Duke Global Health Institute, 2007-present Group Advisor, Universities Allied for Essential Medicines (UAEM), 2007-present

5 Chair, Search Committee, Associate Director, Kenan Institute of Ethics, 2007 (separate from similar 2003-2004 search committee below) Faculty and Executive Committee Member, Ethics Certificate Program, 2007-present Member, Committee to review appointment of Anthony So to Department of Public Policy Studies, Fall 2007 Member, Duke Translational Medicine Institute Cell and Tissue Therapy Steering Committee, 2007-present Member, Center for Comparative Biology of Vulnerable Populations, 2007-present Chair, Committee to review Graham Glenday for reappointment to Department of Public Policy Studies, Spring 2007 Faculty Member, History and Philosophy of Science, Technology and Medicine Program, Departments of Philosophy and History, Duke University, 2006-present Member, Faculty Council, Kenan Institute of Ethics, Ethics Certificate Program, 2006-present Faculty Member, Health Policy Certificate Program, 2006-present Faculty Member, Genome Revolution Focus program and selection committee, 2006-2008 Member, Campus Culture Initiative Steering Committee, 2006-2007 Faculty Affiliate, Race, Ethnicity, & Gender in the Social Sciences, Social Science Research Institute, 2006-present Research Ethics Consultation Team Member, Clinical Translational Science Awards, 2006present Member, National Breast Cancer Coalition Foundation (NBCCF's) Working Committee, 20062008 Member, Duke Translational Medicine Institute Leadership Group, 2006-present Member, Comprehensive Cancer Center Executive Committee & Institutional Advisory Board, 2005-present Member, Institute for Genome Sciences & Policy Executive Committee, 2005-2008 Faculty Advisor, Physicians for Human Rights, Duke Undergraduate and Medical School Chapters, 2004-present Co-Chair (with Barton Haynes), Global Health Initiative Steering Committee, November 2004June 2006 Member, Global Health Panel, Inauguration of President Richard Brodhead, September 2004 Member, Search Committee, Director of Center for the Study of Medical Ethics and Humanities, 2004-2005 Faculty Associate, Trent Center for Bioethics, Humanities and History of Medicine, 2003present Chair, Search Committee, Associate Director, Kenan Institute of Ethics, 2003-2004 Faculty-In-Residence, Alspaugh Residence Hall, 2003-2010 Member, Working Group, Neurosciences Microarray Center of Duke University Medical Center, June 2002-2006 Member, Steering Committee, Making Meaning of Genomic Information grant, Howard Hughes Medical Institute, September 2002-2005 (R Thompson, Principal Investigator, Duke University)

6

Teaching "Health, Science, and Human Rights," Public Policy 195S, for Focus program fall 2003, Humanitarian Challenges at Home and Abroad; and for Focus program spring 2006, Global Health. "Responsible Genomics," Public Policy 240/Computational Biology and Bioinformatics 212, spring 2004, fall 2005, spring 2007, 2008, 2009, and 2010. "Social and Political History of Genomics," Public Policy 264, fall 2004. Taught a similar course of the same title for the Focus program The Genome Revolution and Its Impact on Society, as Public Policy 196S/History 105S (fall 2006) and Public Policy 81FCS/History89FCS (fall 2007). "Evolution in Science and Culture" (with Priscilla Wald, Professor of English), English 193S/Genome 178S, fall 2009. "Health Policy Capstone," Public Policy 255S: final course for Health Policy Certificate Program. Undergraduate section, spring 2004. Graduate and professional student section (with Christopher Conover), spring 2007. Undergraduate and graduate/professional students, spring 2010. "Genome Sciences and Policy Capstone," final course for undergraduate Genome Science and Policy Certificate Program, spring 2010 (with Hunt Willard, Director of the Institute for Genome Sciences & Policy, Professor of Biology and of Molecular Genetics and Microbiology). House course faculty sponsor: "The Physician Activist," fall and spring 2005. Stanford-in-Washington Seminar and Tutorial director, Fall 1996-Winter 2003 (offered 13 quarters as a seminar or tutorial): "How Policy Decisions Get Made about Health Research and Health Policy" Medical Background Internship: Pathology, University of Colorado Hospital, 1979-80 Residency: Pathology, University of Colorado Medical School, 1980-1982 Medical License: State of Maryland, D31433, 1984-1992 Honors, Fellowships and Specialized Coursework Faculty Affiliate, Georgetown University, Joseph and Rose Kennedy Institute of Ethics, 20072009 Robert Wood Johnson Foundation Investigator Award in Health Policy Research, Georgetown University, 1999-2002 Fellow, Cecil and Ida Green Center, University of Texas, Dallas, January-April 1996 Fellow, American Association for the Advancement of Science, 1988-present Intensive Bioethics Course, Kennedy Institute for Ethics, Georgetown University, June l983; faculty June 1987-1990; advanced course faculty, December 1987 Congressional Science and Engineering Fellowship, 1982-83 Neurobiology Course, Marine Biological Laboratories, Woods Hole, June-August 1982 NIH National Research Service Award, University of Colorado, 1981-82 National Endowment for the Humanities Summer Fellowship, University of Chicago, July 1981 Student Honors and Research Committee Award, University of Colorado Medical School, 1979 Chester H. Elliott Award in Pathology, University of Colorado Medical School, 1978

7 Detur Book Prize, Harvard College, 1974 Student Summer Fellowship in Nuclear Chemistry, Lawrence Berkeley Laboratory (Atomic Energy Commission), University of California at Berkeley, Summer 1974 Special Student, Mathematics, University of Colorado, Denver; 1971, 1973, 1977 Research Principal Investigator, Duke Interdisciplinary Working Group "Cognitive and Behavioral Genomics, Evolution, and Race? What Lies Ahead?" (Provost's Common Fund) 2007­ 2009 Principal Investigator, Policy Ethics and Law Core, Duke Translational Medicine Institute (Clinical Translational Science Award), National Center for Research Resources, 20062007; Investigator 2007-present Principal Investigator, Center for the Study of Public Genomics, Duke University and Georgetown University, Center of Excellence for ELSI Research P50 Center, National Human Genome Research Institute and U.S. Department of Energy, 2004-2010 (Overall PI and PI of one core and one research project) Principal Investigator, Policy, Ethics, and Law Core, Southeast Regional Center of Excellence for Emerging Infections and Biodefense, National Institute of Allergy and Infectious Diseases, 2003-2008 (Fred Sparling of UNC is PI of SERCEB overall) Grantee, Burroughs Wellcome Fund, Stanford-in-Washington, for a case study on international funding of genomics research, in collaboration with the Global Forum for Health Research (Geneva) and the World Health Organization, 2000-2001 Robert Wood Johnson Foundation Investigator Award in Health Policy Research, Georgetown University, 1999-2002 Principal Investigator, grants from Robert Wood Johnson Foundation and National Cancer Institute, on youth tobacco control, 1992-1994 Principal Investigator, Alfred P. Sloan Foundation grant to write a political history of the Human Genome Project, Georgetown University 1988-1991 Principal Investigator, National Science Foundation grant to establish an oral history resource and Human Genome Archive at Georgetown University, 1990-1991 Postdoctoral fellow, molecular biology. Tyrosine kinases encoded by retroviral oncogenes, Raymond L. Erikson, Department of Pathology, University of Colorado (during pathology residency, PGY 2 and 3, supported in part by a National Research Service Award), July 1980-June 1982 Research coordinator and medical student researcher, primarily on Mendelian dominant (inherited) Alzheimer's Disease: James H. Austin, M.D., mentor, University of Colorado, Chair, Department of Neurology; also worked in that laboratory1971-82 (part time in high school, full-time summer 1978, then regularly as medical student 1976-1979, and intermittently as postdoc and resident 1979-1982) Medical student researcher, D. Carleton Gajdusek Laboratory, National Institute of Neurological and Communicative Disorders and Stroke, National Institutes of Health, November 1979January 1980; prion and other "slow virus" encephalopathies Editorial Positions Editorial Board, Human Gene Therapy, 1989-2009 Editorial Board, American Journal of Alzheimer's Disease, 1997-2007

8 Editorial Advisory Board, Courts, Health Science, and the Law, 1989-1992 Special Features Editor, Genomics, 1989-1992

Publications
To request an item that is not available online, email: [e-mail]

Peer-Reviewed Publications
Book The Gene Wars: Science, Politics, and the Human Genome (New York and London: WW Norton & Co., 1994; paperback 1996). Published also in Korean (translated by Shin Won Literary Agency, published by Minum, 1995) and Japanese (translated by K. and G. Ishidate, published by Kogaku Dojin, 1996). Peer-reviewed and accepted for publication by Oxford University Press, University of California Press, and Harvard University Press. Full text available online (with permission of publisher): http://www.genome.duke.edu/books/gene-wars/. Articles and Chapters Cook-Deegan R and Heaney C. "DNA Patents in Genomics and Human Genetics," Annual Review of Genomics and Human Genetics, forthcoming. Cook-Deegan R: "Gene-Environment Studies in an Era of Full-Genome Sequencing: Some Lessons from Eugenics and the Race-IQ Debates," in Ken Dodge and William Rutter, Eds., volume forthcoming. Chandarsekharan S and Cook-Deegan R. "Gene patents and personalized medicine--What lies ahead?" Genome Medicine 2009 1(No. 10, 21 September): 8x. Colaianni A and Cook-Deegan R. "Columbia University's Axel Patents: Technology Transfer and Implications for the Bayh-Dole Act." The Milbank Quarterly 87(3): 683715, 2009. Green R, Roberts J, Cupples L, Relkin N, Whitehouse P, Brown T, Eckert S, Butson M, Sadovnick A, Quaid K, Chen C, Cook-Deegan R, and Farrer L. "A Randomized Trial of APOE Genotype Disclosure for Risk of Alzheimer's Disease: The REVEAL Study." New England Journal of Medicine. 361 (July 16):245-254, 2009. NIH MS ID 133885. Heaney C, Carbone J, Gold R, Bubela T, Holman CM, Colaianni A, Lewis T, and CookDeegan R. "The Perils of Taking Property Too Far." Stanford Journal of Law, Science and Policy. 1:46-64, 2009. NIH MS ID 111841 Cook-Deegan R, Chandrasekharan S, and Angrist M. "The Dangers of Diagnostic Monopolies." Nature 458:405-406, 2009. NIH MS ID 105466. Magnus D, Cho MK, and Cook-Deegan R: "Direct-to-Consumer Genetic Tests: Beyond Medical Regulation?" Genome Medicine 1:17, 2009. PMCID: PMC2664950. Cook-Deegan R, Lohr KN, and Palmer JH: "How Bioethics Can Inform Policy Decisions About Genetic Enhancement." Chapter in Altering Nature, v. 2: Religion, Biotechnology and Public Policy, ed. B. Andrew Lustig, Baruch A. Brody, and Gerald P. McKenny (Springer) pp. 161-198, 2008. Lyerly AD, Steinhauser K, Voils C, Namev E, Alexander C, Bankowski B, Cook-Deegan R, Dodson WC, Gates E, Jungheim ES, McGovern PG, Myers ER, Osborn B, Schlaff W, Sugarman J, Tulsky JA, Walmer D, Faden RR, and Wallach E: "Fertility Patients' Views about Frozen Embryo Disposition: Results of a Multi-Institutional U.S. Survey." Fertility

9 and Sterility Published online 5 December 2008; doi:10.1016/j.fertnstert.2008.10.015. NIH MS ID 109477. Angrist M, Chandrasekharan S, Heaney C, and Cook-Deegan R: "Impact of Gene Patents and Licensing Practices on Access to Genetic Testing for Long QT Syndrome." Peerreviewed case study commissioned by the Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS), 2009. Being prepared for publication in Genetics in Medicine 2010. Chandrasekharan S, Heaney C, James T, Conover C, and Cook-Deegan R: "Impact of Gene Patents and Licensing Practices on Access to Genetic Testing for Cystic Fibrosis." Peerreviewed case study commissioned by the Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS), 2009. Being prepared for publication in Genetics in Medicine 2010. Chandrasekharan S, Pitlick E, Heaney C, and Cook-Deegan R: "Impact of Gene Patents and Licensing Practices on Access to Genetic Testing for Hereditary Hemochromatosis." Peer-reviewed case study commissioned by the Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS), 2009. Being prepared for publication in Genetics in Medicine 2010. Cook-Deegan R, DeRienzo C, Carbone J, Chandrasekharan S, Heaney C, and Conover, C: "Impact of Gene Patents and Licensing Practices on Access to Genetic Testing for Inherited Susceptibility to Cancer: Comparing Breast and Ovarian Cancers to Colon Cancers." Peer-reviewed case study commissioned by the Secretary's Advisory Committee on Genetics, Health, and Society, 2009. Being prepared for publication in Genetics in Medicine 2010. Colaianni A, Chandrasekharan S, and Cook-Deegan R: "Impact of Gene Patents and Licensing Practices on Access to Genetic Testing and Carrier Screening for Tay-Sachs and Canavan Disease." Peer-reviewed case study commissioned by the Secretary's Advisory Committee on Genetics, Health, and Society, 2009. Being prepared for publication in Genetics in Medicine 2010. Powell A, Chandrasekharan S, and Cook-Deegan R: "Spinocerebellar Ataxia: Patient and Health Professional Perspectives on Whether and How Patents Affect Access to Clinical Genetic Testing." Peer-reviewed case study commissioned by the Secretary's Advisory Committee on Genetics, Health, and Society, 2009. Being prepared for publication in Genetics in Medicine 2010. Skeehan K, Heaney C, and Cook-Deegan R: "Impact of Gene Patents and Licensing Practices on Access to Genetic Testing for Alzheimer's Disease." Peer-reviewed case study commissioned by the Secretary's Advisory Committee on Genetics, Health, and Society, 2009. Being prepared for publication in Genetics in Medicine 2010. So A, Sampat B, Rai A, Cook-Deegan R, Reichman J, Weissman, R, and Kapczynski A: "Is Bayh-Dole Good For Developing Countries? Lessons from the U.S. Experience." PLoS Biology. 6(10):e262, 2008. PMCID: PMC2573936. Karp D, Carlin S, Cook-Deegan R, Ford D, Geller G, Glass D, Greely H, Guthridge J, Kahn J, Kaslow R, Kraft C, MacQueen K, Malin B, Scheuerman R, and Sugarman J: "Ethical and Practical Issues Associated with Aggregating Databases." PLoS Medicine. 5(9):e190, 2008. PMCID: PMC2553818. Chandrasekharan S, Perin NC, Wiechers IR, and Cook-Deegan R: "Public-Private Interactions in Genomic Medicine: Research and Development." Chapter 37 of Genomic

10 and Personalized Medicine, ed. Huntington F. Willard and Geoffrey S. Ginsburg (NY: Elsevier) pp. 434-444, October 2008. Pohlhaus JR and Cook-Deegan, R: "Genomics Research: World Survey of Public Funding." BMC Genomics 9(10 October):472, 2008. PMCID: PMC2576262. Christensen KD, Roberts JS, Royal CD, Fasaye GA, Obisesan T, Cupples LA, Whitehouse PJ, Butson MB, Linnenbringer EP, Relkin NR, Farrer LA, Cook-Deegan RM, Green RC: "Incorporating Ethnicity into Genetic Risk Assessment for Alzheimer's Disease: The REVEAL Study Experience." Genetics in Medicine 10 (March): 207-214, 2008. PMCID: PMC2483343. Davidson EM, Frothingham R, and Cook-Deegan R: "Science and Security: Practical Experiences in Dual-Use Review." Science 316 (8 Jun 2007): 1432-1433, 2007. PMID: 17556571. Cook-Deegan R and Dedeurwaerdere T: "The Science Commons in Life Science Research: Structure, Function and Value of Access to Genetic Diversity." International Social Science Journal (UNESCO) 188 (June): 299-317, 2006. Translated as <<Biens communs scientifiques>> et recherché en sciences de la view: structure, function et valeur de l'acces a la diversite genetique. Revue international des sciences socials. 188 (June):317 ­ 338, 2006. Cook-Deegan R: "The Science Commons in Health Research: Structure, Function, and Value." Journal of Technology Transfer, 32:133-156, 2007. Correction at http://www.springerlink.com/content/d08736m462382715/fulltext.pdf Tofano D, Wiechers IR, and Cook-Deegan R: "Edwin Southern, DNA Blotting, and Microarray Technology: A Case Study of the Shifting Role of Patents in Academic Molecular Biology." Genomics, Society, and Policy Journal 2(2): 50-61, 2006. Ginsburg GS, Angrist M, Cook-Deegan R: "Genomics and Medicine at a Crossroads in Chernobyl." Science 314: 62-3, 2006. PMID: 17023637. Caulfield T, Cook-Deegan R, Kieff FS, Walsh JP: "Evidence and Anecdotes: An Analysis of Human Gene Patenting Controversies." Nature Biotechnology 24(9): 1091-1094, 2006. PMCID: PMC2701726. Cook-Deegan R and McGeary M: "The Jewel in the Federal Crown? History, Politics, and the National Institutes of Health." Chapter in History and Health Policy in the United States: Putting the Past Back In. Rosemary A. Stevens, Charles E. Rosenberg, Lawton R. Burns, eds. New Brunswick, NJ: Rutgers University Press, pp.176-201, 2006. Fore J, Wiechers IR, and Cook-Deegan R: "The Effects of Business Practices, Licensing, and Intellectual Property on Development and Dissemination of the Polymerase Chain Reaction: Case Study." Journal of Biomedical Discovery and Collaboration 1(7): 2006. PMCID: PMC1523369. Shanawani H, Dame L, Schwartz D, and Cook-Deegan R: "Non-Reporting and Inconsistent Reporting of Race and Ethnicity in Articles that Claim Associations among Genotype, Outcome, and Race or Ethnicity," Journal of Medical Ethics, 32 (Dec): 724-728, 2006. Lyerly AD, Steinhauser K, Namey E, Tulsky JA, Cook-Deegan R, Sugarman J, Walmer D, Faden RR, Wallach E: "Factors that Affect Infertility Patients' Decisions about Frozen Embryos." Fertility and Sterility 85(6): 1620-1630, 2006. PMID: 16678178. Angrist M and Cook-Deegan R, "Who Owns the Genome?" The New Atlantis, Winter 2006 11: 87-96, 2006. PMID: 16789312.

11 Pressman L, Burgess R, Cook-Deegan R, McCormack SJ, Nami-Wolk I, Soucy M and Walters L: "The Licensing of DNA Patents by US Academic Institutions: An Empirical Survey." Nature Biotechnology 24 (January): 31-39, 2006. PMCID: PMC2726797. Zick CD, Mathews C, Roberts JS, Cook-Deegan R, and Pokorski RJ: "Genetic Testing for Alzheimer's Disease and Its Impact on Insurance Purchasing Behavior." Health Affairs 24 (March/April): 483-490, 2005. PMCID: PMC1761120. Palmer JG and Cook-Deegan R: "National Policies to Oversee Inheritable Genetic Modifications Research." Chapter in Designing Our Descendants: The Promises and Perils of Genetic Modifications. Audrey R. Chapman and Mark S. Frankel, eds. Baltimore, MD: Johns Hopkins University Press, 2003, pp. 275-295. Cook-Deegan R: "Colossus of Codes." Biographical sketch of James D. Watson in Inspiring Science: Jim Watson and the Age of DNA. (This volume celebrates the 50th anniversary of DNA structure, Watson's 75th birthday and his 35th year at Cold Spring Harbor Laboratory.) John Inglis, Jan Witkowski, and Joseph Sambrook, eds. Cold Spring Harbor Press, 2003, pp. 387-393. Bar-Shalom A and Cook-Deegan R: "Patents and Innovation in Cancer Therapeutics: Lessons from CellPro." Milbank Quarterly 80 (December): 637-676, 2002. Cook-Deegan R and McCormack S: "Patents, Secrecy, and DNA," with webnote supplement. Science 293: 217, 2001. Cook-Deegan R: "Privacy, Families, and Human Subject Protections: Some Lessons from Pedigree Research." Journal of Continuing Education in the Health Professions 21 (Fall): 224-237, 2001. Cook-Deegan R, Johnson A and Chan C: "World Survey of Funding for Genomics Research: Final Report for Health Research and the World Health Organization." Global Genomics & Health Disparities: Emerging Issues for Nations and Populations, RJR Blatt and B Kivimae Krimgold, eds. Journal of BioLaw and Business, Special Supplement: 2236, 2001. Cook-Deegan R: "Protecting the Vulnerable in Brain Research." Cerebrum, 2 (Spring): 7391, 2000. Cook-Deegan R: "Medical Biotechnology, United States Policy Influencing Its Development." Encyclopedia of Ethical, Legal and Policy Issues in Biotechnology, TH Murray and MJ Mehlman, eds. (New York: John Wiley & Sons) pp. 798-809, 2000. Cook-Deegan R: "Government Policy and the Commercial Value of Academic Information." Chapter 26 in AAAS Science and Technology Policy Yearbook 2000. AH Teich, SD Nelson, C McEnaney, and SJ Lita, eds. Washington, DC, American Association for the Advancement of Science. pp. 273-289, 2000. Cook-Deegan R: "The Genetics of Alzheimer Disease: Some Future Implications." Chapter 15 in Concepts of Alzheimer Disease Biological, Clinical, and Cultural Perspectives, SPJ Whitehouse, K Maurer, and JF Ballenger, eds. (Baltimore, MD: Johns Hopkins University Press) pp. 269-290, 2000. Cook-Deegan R: "National Policies Influencing Innovation Based on Human Genetics." Chapter in The Commercialization of Genetic Research: Ethical, Legal, and Policy Issues, T Caulfield and B Williams-Jones, eds. (New York: Plenum) pp. 13-27, 1999. Thomas AM, Cohen G, Cook-Deegan R, O'Sullivan J, Post SG, Roses AD, Schaffner KF, and Green RM: "Alzheimer Testing at Silver Years." Cambridge Quarterly of Healthcare Ethics 7: 294-307, 1998.

12 Burris J, Cook-Deegan R, Alberts B: "The Genome Project after a Decade: Policy Issues." Nature Genetics 20: 333-335, 1998. Cook-Deegan R: "Some Questions Arising in the Commercial Development of Genetic Tests for Alzheimer's Disease." Chapter 6 in Genetic Testing for Alzheimer's Disease: Ethical and Clinical Issues, S Post and P Whitehouse, eds. (Baltimore, MD: Johns Hopkins University Press) pp. 84-100, 1998. Cook-Deegan R: "Confidentiality, Collective Resources, and Commercial Genomics." Chapter 9 in Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, MA Rothstein, ed. (New Haven, CT: Yale University Press) pp.161-183, 1997. Cook-Deegan R: "Does NIH Need a DARPA?" Issues in Science and Technology 13 (Winter): 25-28, 1996. Cook-Deegan R: "Genome Mapping and Sequencing." In Encyclopedia of Bioethics, WT Reich, Editor-in-Chief; JC Fletcher, Genetics Section Editor; M Solberg, Project Editor. New York: Macmillan. pp. 1011-1019, 1995. Cook-Deegan R: "Germ-Line Gene Therapy: Keep the Window Open A Crack." Politics and the Life Sciences 13 (August): 217-220, 1994. Geiger HJ and Cook-Deegan R: "The Role of Physicians in Conflicts and Humanitarian Crises: Case Studies from the Field Missions of Physicians for Human Rights." 19881993. Journal of the American Medical Association 270: 616-620, 1993. Cook-Deegan R: "Origins of the Human Genome Project." Risk: Health, Science, and Environment 5 (Spring): 97-118, 1994. Hanna KE, Cook-Deegan R, and Nishimi RY: "Finding a Forum for Bioethics in U.S. Public Policy." Politics and the Life Sciences 12 (August): 205-219, 1993. Cook-Deegan R and Watson JD: Human Genetics: "The Human Genome Project." 1992 Yearbook of Science and Technology, Sybil P. Parker, Editor-In-Chief. (New York: McGraw-Hill) pp. 204-205, 1992. Cook-Deegan R: "Mapping the Human Genome." Southern California Law Review 65: 1501-1518, 1991. Cook-Deegan R: "Genesis of the Human Genome Project." Molecular Genetic Medicine I: T Friedmann, ed. (San Diego, CA: Academic Press) pp. 1-75, 1991. Cavalli-Sforza LL, Wilson AC, Cantor CR, Cook-Deegan R, King M-C: "Call for a Worldwide Survey of Human Genetic Diversity: A Vanishing Opportunity for the Human Genome Project." Genomics 11 (Oct): 490-491, 1991. Cook-Deegan R: "The Human Genome Project: Formation of Federal Policies in the United States, 1986-1990." Chapter in Biomedical Politics, K Hanna, ed. Washington, DC: National Academy Press, 1991, pp. 99-168, with commentaries by Paul Berg and Ernest May pp. 169-175. Commissioned by the Committee to Study Decision-making, Institute of Medicine, National Academy of Sciences. Sandler RH, Epstein PR, Cook-Deegan R, Shukri A: "Letter from Cukurca: Initial Medical Assessment of Kurdish Refugees in the Turkey-Iraq Border Region." Journal of the American Medical Association, 266 (7 Aug): 638-640, 1991. Watson JD and Cook-Deegan R: "Origins of the Human Genome Project." FASEB Journal 5: 8-11, 1991. Cook-Deegan R: "Social and Ethical Implications of Advances in Human Genetics." Southern Medical Journal 83 (8): 879-882, 1990.

13 Watson JD, and Cook-Deegan R: "The Human Genome Project and International Health." Journal of the American Medical Association 263: 3322-3324, 1990. Cook-Deegan R: "Human Gene Therapy and Congress." Human Gene Therapy 1: 163-170, 1990. Cook-Deegan R, Guyer M, Rossiter BJF, Nelson DL, and Caskey CT: "Report of the Large DNA Insert Cloning Workshop." Genomics 7: 654-660, 1990. Cook-Deegan R, Rossiter BJF, Engel L, Nelson DL, and Caskey CT: "Report of the X Chromosome Workshop." Genomics 7: 647-654, 1990. Cook-Deegan R: "The Alta Summit, December 1984." Genomics 5: 661-663, 1989. Reprinted in Human Genome: 1989-1990 Program Report, US Department of Energy, Office of Energy Research, Office of Health and Environmental Research, DOE/ER0446P, March 1990. Hu H, Cook-Deegan R, and Shukri A: "The Use of Chemical Weapons." Journal of the American Medical Association. 262: 640-643, 1989. Cook-Deegan R: "Changing Public Policy for Dementia Care." Chapter in Dementia Care: Patient, Family, and Community, NL Mace, ed. (Baltimore, MD: The Johns Hopkins University Press) 374-392, 1989. Cook-Deegan R: "The Physician and Technological Change." Chapter in The Physician as Captain of the Ship, NMP King, LR Churchill, and AW Cross, eds. (Boston: D Reidel) pp. 125-158, 1988. Presented at a symposium, "The Physician as Captain of the Ship: A Critical Reappraisal," at the University of North Carolina, Chapel Hill, April 17-19, 1986. Cook-Deegan R and Whitehouse, PJ: "Alzheimer's Disease and Other Dementias: The Looming Crisis." Issues in Science and Technology 3 (Summer): 52-63, 1987. Cook-Deegan R: "Dementia and Federal Policy." American Journal of Alzheimer's Care. 1 (No. 2): 5-6, Spring 1986. Tomasiewicz HG, Cook-Deegan R, Chikaraishi DM: "Isolation of a cDNA clone complementary to sequences for a 34-kilodalton protein which is a pp60v-src substrate." Molecular and Cellular Biology 4: 1935-1938, 1984. Erikson E, Cook R, Miller GJ, Erikson RL: "The same normal cell protein is phosphorylated after transformation by avian sarcoma viruses with unrelated transforming genes." Molecular and Cellular Biology 1: 43-50, 1981. Cook R, Schneck SA, Clark DB: "Twins with Alzheimer's Disease." Archives of Neurology 38: 300-301, 1981. Cook R: "The Narrow Gauge (Sounding Board)." New England Journal of Medicine 301: 500-501, 1979. Cook R, Ward BE, Austin JH: "Studies in aging of the brain, IV. Familial Alzheimer Disease: its relation to transmissible dementia and microtubular defects." Neurology 29: 1402-1412, 1979. Ward BE, Cook R, Robinson A, Austin JH: "Increased Aneuploidy in Alzheimer Disease." American Journal of Medical Genetics 3: 137-144, 1979. Cook R, Austin JH: "Precautions in familial transmissible dementia, including familial Alzheimer's Disease." Archives of Neurology 35: 697-698, 1978.

14

Invited Publications
Staples, J, Cook-Deegan, R, and Ginsburg, GS: "The Role of the Academic Medical Center in Advancing Personalized Health Care." Commissioned paper in Personalized Health Care: Pioneers, Partnerships, Progress (Report prepared by the Initiative on Personalized Health Care, Department of Health and Human Services, November 2008). Cook-Deegan R: "Gene Patents." In From Birth to Death and Bench to Clinic: The Hastings
Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns. 2008.

Blogger for Issues in Science and Technology (online version of the journal administered by the Green Center at University of Texas, Dallas, and the National Academies), May-Sept 2006. Hubbard R, Cook-Deegan R, Venter J C, Wilson J Q: "The Ethical Implications of the New Genetics: Does Research on Genes Require a New Ethical Paradigm?" 1974-2005 PRIM&R, Through the Years, Three Decades of Protecting Human Subjects, Paula Knudson, ed., pp. 257-260. So A, Rai A, and Cook-Deegan R. "Intellectual Property Rights and Technology Transfer: Enabling Access for Developing Countries." Commissioned Report for the World Health Organization Commission on Intellectual Property Rights, Innovation, and Public Health. Submitted 4 April 2005 to the World Health Organization. Cook-Deegan R: "How Health Research Got So Big in the United States." Research Policy Alert (formerly "The Blue Sheet" and Washington Fax) Experts Forum (on-line resource), June 22, 2005 (posted as a special feature). Cox N, Heaney C, and Cook-Deegan R: "The Context for Secrecy and Conflicts between Commercial and Scientific Roles in Academic Health Research," in Ethical Issues in the Management of Financial Conflicts of Interest in Biomedical Research, chapter submitted to The Hastings Center for a report and book on conflicts of interest in health research, 2005; forthcoming. Cook-Deegan R: The Urge to Commercialize: Interactions between Public and Private Research and Development. Section in The Role of Scientific and Technical Data and Information in the Public Domain: Proceedings of a Symposium, National Research Council of the National Academies (Washington, DC: National Academy Press) pp. 8794, 2003. Cook-Deegan R: Gene Patents: Why Secrecy is Destructive to Innovation. Chapter in Commercial Implications for Genomics. Cambridge, MA: Cambridge Healthtech Institute, 2002. (Section of proceedings distributed to attendees.) Cook-Deegan R: Final report to the World Health Organization and Global Forum for Health Research, September 2000. Cook-Deegan R: Genomics and drug development: Some examples from cancer research. Presented to the Fundación de Ciencias de Salud, Madrid, 26 October 2000; reprinted in Foundation annual report and conference summary. Cook-Deegan R, Johnson A and Chan C: "World Survey of Genomics Research Funding, Interim Report, July 2000." Submitted to the World Health Organization and Global Forum for Health Research, Geneva, Switzerland, with presentation of summary findings to the Office for Economic Cooperation and Development, Paris. Cook-Deegan R, The HHMI Presence in Policy. A background paper prepared for the Howard Hughes Medical Institute, March 2000. (Unpublished background paper for HHMI senior leadership only.)

15 Cook-Deegan R: "Government Policy and the Commercial Value of Academic Information." Based on a talk to the AAAS-MIT symposium "Secrecy in Science: Exploring University, Industry, and Government Relationships," at Kresge Auditorium, MIT campus, March 1999. Cook-Deegan R: "Alzheimer's Disease: Tracing the Genetic Link." Excerpt of chapter one of The Gene Wars with an interview and update with Patrick Perry. Saturday Evening Post May-June, pp. 22-27 and 89-92, 1999. Cook-Deegan R: Moderator of on-line forum on gene therapy. American Scientist May 1999. (An early Sigma Xi online blog, no longer posted.) Cook-Deegan R: Commentary on "Distinguishing Genetic from Nongenetic Medical Tests: Some Implications for Antidiscrimination Legislation" by JS Alper and J Beckwith, Science and Engineering Ethics 4: 151-154, 1998. Cook-Deegan R: "Finding a Voice for Bioethics in Public Policy: Federal Initiatives in the United States, 1974-1991." Chapter in Consensus Formation in Medicine and Health Care, HAMJ ten Have and HM Sass, eds. (Boston, Kluwer Press) pp. 107-140, 1987. Cook-Deegan R: "Do Research Moratoria Work? Lessons from Fetal Research, Gene Therapy, and Recombinant DNA Research." Background paper for the National Bioethics Advisory Commission pertinent to its deliberations on human cloning. April 1997. Charo RA, Cook-Deegan R, Eisenberg RS, Geller G and Finneran K: "The Politics of Genetic Testing." Issues in Science and Technology XIII (Fall): 48-54, 1996, based on a March 1996 roundtable discussion sponsored by North Lake College, Dallas, Texas. "National Institute on Aging, Alzheimer's Association Working Group. Apolipoprotein E genotyping in Alzheimer's Disease." The Lancet 347 (20 April): 1091-1095, 1996. R Cook-Deegan chaired the subgroup on "counseling, ethical and medicolegal issues" (N Relkin was principal author and took the lead on organizing and writing this article). Cook-Deegan R: Merit Review for Federally Funded Science and Technology. White Paper for the Council of the National Academy of Sciences, February 1996. (Used as background for Council discussion; unpublished.) Cook-Deegan R: "Bioethics and the Federal Government: Some Implications for Psychiatric Genetics." Chapter for Genetics and Mental Illness, LL Hall, ed. (New York, Plenum Press) pp. 189-218, 1996. Leckman JF, Elliott GR, Bromet EJ, Campbell M, Cicchetti D, Cohen DJ, Conger JJ, Coyle JT, Earls FJ, Feldman R, Green M, Hamburg B, Kazdin AE, Offord DR, Purpura D, Solnit AJ, Solomon F, and Cook-Deegan R: "Report Card on the National Plan for Research on Child and Adolescent Mental Disorders: The Midway Point." Archives of General Psychiatry 52: 715-723, 1995. Cook-Deegan R: Tough Times, Tough Choices. The Bridge (Journal of the National Academy of Engineering) 25 (Fall): 2-4, 1995. (Unarchived.) Cook-Deegan R: "Roots of Controversy: Origins of the Human Genome Project." Keynote address for international conference "El Derecho Ante el Proyecto Genoma Humano (The Human Genome Project: Legal Aspects)" at the University of Deusto and the Diputación Foral de Bizkaia in Bilbao, Spain, May 24-26, 1993. Reprinted in The Human Genome Project: Legal Aspects, 1, including a chronology of the human genome project (Bilbao, Spain: Fundación BBV) pp. 67-80, 1995.

16 Cook-Deegan R: Survey of Reports on Federal Laboratories. Background paper for the Committee on Criteria for Federal Support of Research and Development, National Academy of Sciences, May 1995 (revised July 1995). Available through the Commission on Physical Sciences, Mathematics, and Applications, National Research Council, Washington, DC. (Background paper prepared for "Press Committee" on federal R&D budgeting; unpublished.) Cook-Deegan R: Previous Analyses of the U.S. R&D Allocation Process. Background paper for the Committee on Criteria for Federal Support of Research and Development, National Academy of Sciences, January 1995. (Unpublished and unarchived background paper prepared for "Press Committee" on federal R&D budgeting.) Cook-Deegan R: Some Issues in Federal Technology Transfer and Ways to Study Them. White paper prepared for the Office of Science and Technology Policy (OSTP), Executive Office of the President, as background for a November, 1994 meeting organized by OSTP with assistance from the Office of Extramural Research, National Institutes of Health at the National Academy of Sciences. (Background paper prepared for OSTP conference on technology transfer; unpublished.) Hanna KE, Cook-Deegan R, Nishimi RY: "Bioethics and Public Policy: Still Seeking a Forum." Politics and the Life Sciences 13 (February): 102-105, 1994. Cook-Deegan R, Fredrickson DS, Joseph SC, and Rall DP: "Medicine, Public Health and Environment." Issues in Science and Technology (Fall): 68-74, 1994. Cook-Deegan R: "Genetics and the Social Ethics of Research (Editorial)." Amyloid 1 (December): 283-285, 1994. Cook-Deegan R and Eisenberg R: "Patents, Technology Transfer, and Genome Research." Summary of a Franklin Pierce Law Center Conference. Human Genome News (March): 6-7, 9, 1994. Cook-Deegan R: "Survey of Genome Research Corporations." Contract report on financial and technical background of genome research start-up firms prepared for the Office of Technology Assessment, US Congress, for its report on DNA patenting. March 1994. Cook-Deegan R: "Private Parts." The Sciences (April 1994): 18-23. This is an adaptation of chapters 16 and 17 from The Gene Wars, condensed by R Coontz, Senior Editor, and PG Brown, Editor-in-Chief, New York Academy of Sciences. Cook-Deegan R: "Ethical Issues Arising in the Search for Neurological Disease Genes." In Intractable Neurological Disorders, Human Genome Research, and Society, Proceedings of a conference held November 19-21, 1993, Fukui, Japan, N. Fujiki and D. Macer, eds. (Christchurch, NZ: Eubios Ethics Institute) pp. 81-92, 1994. Japanese translation available: (Tsukuba Science City, Japan: Eubios Ethics Institute) 1994. Cook-Deegan R: "Introduction: Genes and Families." Commentary on articles by R Alta Charo and R Shinn in The Genetic Frontier: Ethics, Law and Policy, MS. Frankel and A Teich, eds. (Washington, DC: American Association for the Advancement of Science, 1994) pp. 3-7. Cook-Deegan R: "Trends in Science, Technology, and Drug Discovery." Chapter 5 of a report Pharmaceutical R&D: Costs, Risks, and Rewards. Office of Technology Assessment, US Congress, Report OTA-H-522 (Washington, DC: Government Printing Office) pp. 105-134, 1993.

17 Whitehouse, PJ and Cook-Deegan R: "Epilogue." Chapter in Dementia, Peter J. Whitehouse, ed., Fred Plum, Editor-In-Chief, Contemporary Neurology Series (Philadelphia: F. A. Davis) pp. 435-441, 1993. Cook-Deegan R, Venter JC, Gilbert W, Mulligan J, Mansfield BK: "DNA Sequencing Conference, II." Meeting summary. (Prepared for meeting attendees; unpublished.) Cook-Deegan R, Venter JC, Pearson ML, Mansfield BK: "The Genome Project and the Pharmaceutical Industry." Meeting summary. (Prepared for meeting attendees; unpublished.) Cook-Deegan R: "NIH-DOE Joint Working Group on Ethical, Legal, and Social Issues Established." Human Genome News 2 (May): 5, 1990. Cook-Deegan R: "The Human Genome Project." Chapter in Preparing for Science in the 21st Century. Washington, DC: Association of Academic Health Centers, 1991. Based on a talk to the Association of Academic Health Centers, Naples, Florida, 4 November 1990. Cook-Deegan R: "Public Policy Implications of the Human Genome Project." In Genetics, Ethics, and Human Values: Human Genome Mapping, Genetic Screening, and Gene Therapy, pp. 56-71, 1991. Proceedings of the XXIVth CIOMS Conference, Tokyo and Inuyama City, Japan, 22-27 July 1990. Council for International Organizations of Medical Sciences (CIOMS). (Served as rapporteur and main author for Group C: Human Gene Therapy, and assisted Alex Capron, Ronald Worton and Nancy Wexler in editing reports from Work Groups A and B.) Watson JD and Cook-Deegan R: "Perspectives on the Human Genome Project." Biofutur 94 (Oct): 65-68, 1990. Zweig FM, Neuman LK, Finesilver S, Cook-Deegan R, and Bezold C: "The Plenary on Courts, Science, Technology and the Future." Courts, Health Science, and the Law 1 (Oct): 194-204, 1990. Watson JD and Cook-Deegan R: "The Human Genome Project and Children of Tomorrow." California Pediatrician 6 (Fall): 7-8, 1990. Cook-Deegan R: "Some Implications of Mapping the Human Genome. Paper presented at an international meeting on mapping and sequencing the human genome." University of Bochum, Federal Republic of German, published as "Medizinethische Materialien," Heft 47. Bochum, Germany: Ruhr-Universität Bochum, Zentrum für Medizinische Ethik, September 1989. Translated into German and reprinted as "Herausforderungen bei DNSKartierung und -Sequenzierung" in Genomanalyse und Gentherapie, Hans-Martin Sass, ed. (Heidelberg, Springer-Verlag) pp. 171-196, 1991. Physicians for Human Rights: Winds of Death: Iraq's Use of Poison Gas against Its Kurdish Population. Report of a Medical Mission to Turkish Kurdistan. (Somerville, MA: Physicians for Human Rights) February 1989. Reprinted with testimony from February 9, 1989, hearings before the Committee on Governmental Affairs in a report Proliferation of Chemical and Biological Weapons. Washington DC: Government Printing Office, 1989. (Authors and mission participants were Cook-Deegan R, Hu H and Shukri A.) Cook-Deegan R, and Winters-Miner LA: "Appendix: Research bibliography on familial Alzheimer's disease." Section in Familial Alzheimer's Disease: Molecular Genetics and Clinical Perspectives, GD Miner, RW Richter, JP Blass, JL Valentine, and LA WintersMiner, eds. (New York: Marcel Dekker) pp. 397-408, 1989.

18 Cook-Deegan R: "Proposed Definitions." Chapter in Caring for Alzheimer's Patients: A Guide for Family and Healthcare Providers, GD Miner, RW Richter, JP Blass, JL Valentine, and LA Winters-Miner, eds. (New York: Plenum), pp. 53-56, 1989. Cook-Deegan R: "Alzheimer's Disease and Public Policy." Chapter in Caring for Alzheimer's Patients: A Guide for Family and Healthcare Providers, GD Miner, RW Richter, JP Blass, JL Valentine, and LA Winters-Miner, eds. (New York: Plenum) pp. 199-214, 1989. Cook-Deegan R: "Bioethik und Politik." Chapter in Bioethik in den USA, HM Sass, ed. (Berlin: Springer-Verlag) pp. 141-168, 1988. (Translated into German by HM Sass and others at Zentrum für Medizinische Ethik Bochum, Ruhr-Universität, Bochum, Germany.) Cook-Deegan R: "Coordination of Genome Projects," testimony and comments before the Subcommittee on Natural Resources, Agriculture Research and Environment and the Subcommittee on Science, Research and Technology of the Committee on Science, Space and Technology, U.S. House of Representatives, July 14, 1988. Printed for the Committee as H.R. 4502 and S. 1966, The Biotechnology Competitiveness Act, Committee Print No. 138 (Washington, DC: Government Printing Office) pp. 77-89 and 167-182, 1988. Cook-Deegan R: editor and author, Candle and Caduceus, Newsletter of the Amnesty International USA Health Professionals' Network, Vol. 4, Number 1, June 1988. Cook-Deegan R: "Genome Projects: Issues Before Congress," testimony and statement before the Subcommittee on Oversight and Investigations, April 27, 1988. Printed in OTA Report on the Human Genome Project: Serial No. 100-123, Committee on Energy and Commerce, House of Representatives, US Congress (Washington, DC: Government Printing Office) pp. 17-26 and 29-36, 1988. Physicians for Human Rights: Panama 1987: Health Consequences of Police and Military Actions (Somerville, MA: Physicians for Human Rights) April 1988. (Authors and mission participants were Schaller JM and Cook-Deegan R.) Cook-Deegan R: co-editor, Candle and Caduceus, Newsletter of the Amnesty International USA Health Professional Network, Vol. 3, Number 1, May 1987. Cook-Deegan R: "Ethical Analysis and Public Policy." Paper for the Ministry of Science and Technology, Federal Republic of Germany, March 1987; translated into German as "Bioethische Bewertung Im Auftrage Der US-Bundesregierung," Heft 13, Zentrum für Medizinische Ethik Bochum, Ruhr-Universität Bochum, January 1988. Cook-Deegan R: "Recent Progress on Services for Alzheimer's Disease and Other Dementias." Statement before the Subcommittee on Aging, Senate Committee on Labor and Human Resources, US Congress, S. Hrg. 100-321, August 19, 1987 (Washington, DC: Government Printing Office) pp. 28-36, 1987. Cook-Deegan R: "On Mapping the Human Genome." Clinical Chemistry 33: 349-351, 1987. Excerpts of the proposal for an OTA assessment of mapping the human genome. Cook-Deegan R: "Economic Implications of Gene Therapy and Gene Mapping." Paper for the Office of Economic Cooperation and Development. Paris, December 1986. Cook-Deegan R: "Epidemiology, in session on Alzheimer's disease." Talk and paper for the Intensive Course in Geriatric Medicine sponsored by the American College of Physicians, UCLA Academic Geriatric Resource Center, and UCLA Multicampus Division of Geriatric Medicine and Psychiatric Disorders of Late Life sponsored by the

19 UCLA Clinical Research Center for the Study of Psychopathology in the Elderly (Los Angeles: UCLA Neuropsychiatric Institute, UCLA Department of Psychiatry, and American Association for Geriatric Psychiatry) January 1987. Cook-Deegan R: "Public Policy and Dementia: Implications for New Product Development," in Neurological Disorders: Recent Advances in Diagnostics and Drug Development. (Yorktown Heights, NY: Communitech) November 1986. (Proceedings of meeting.) Cook-Deegan R: "Federal Support for Research on Dementia." Statement and replies to questions in a hearing before the Subcommittee on Aging, Senate Committee on Labor and Human Resources, US Congress, July 22, 1986. S Hrg. 99-913 (Washington, DC: Government Printing Office) pp. 95-125, 1987. Cook-Deegan R: "Dealing with the Impact of Dementia." Business and Health. September 1986, pp. 26-28. Cook-Deegan R: editor and author, Candle and Caduceus, Newsletter of the AIUSA Health Professional Network, Vol. 2, No. 1, March 1986. Cook-Deegan R: "Care of the Patient with Dementia." Paper presented to the California Task Force on Alzheimer's Disease, University of California at San Francisco, 16-17 January 1986. (Section of proceedings of meeting.) Cook-Deegan R, Juengst E, Wexler N, Baskin Y, Herskowitz L, Perlman D, Risser J: "Gene Therapy: Ethics and Policy." In Human Gene Therapy, transcript of the Media Outreach Program Roundtable (New York: Scientists' Institute for Public Information), Stanford University, February 13, 1986. Cook-Deegan R: Candle and Caduceus, Newsletter of the AIUSA Health Professional Network, editor and author, Vol. 1, No. 2, Fall 1985. Office of Technology Assessment (R Cook-Deegan and T Schwab Myers): "Dying with Dignity: Difficult Times, Difficult Choices, Report of the Select Committee on Aging, US House of Representatives." October 1985, Committee Publication Number 99-518. (Washington, DC: Government Printing Office) pp. 14-17, October 1985. Cook-Deegan R: "Alzheimer's Disease and other disorders causing dementia." In testimony before the Subcommittee on Investigations and Oversight of the Committee on Science and Technology, US House of Representatives, August 30, 1984. Published in Committee Print Number 135 Alzheimer's Disease Research (Washington, DC: Government Printing Office), pp. 71-98, 1985. Cook-Deegan R: editor and author, Candle and Caduceus, Newsletter of the AIUSA Health Professional Network, Vol. 1, No. 1, Spring 1985. Sisk JE, Cook-Deegan R, Dougherty D, Gelband H, Miike LH, Halpern S: "The use of immunosuppressive drugs in kidney transplantation." Staff memorandum, Office of Technology Assessment, US Congress, March 1984. Reports Note of Explanation: The reports below were prepared when I was staff for Washington-based organizations. Most are book-length reports subjected to extensive external review, but not peerreviewed in the sense usually meant in academia. External peer review is for quality and technical content, and often much more thorough than academic publication peer review; but not

20 part of a process for accepting or rejecting a submission and therefore not an indicator of competitive achievement. I have described my contribution to these in each case. National Cancer Policy Board Reports "CellPro: a case study in intellectual property related to cancer therapeutics." Background memo, June 2001. State Programs Can Reduce Tobacco Use. February 2000. (Main author.) Expanding Medicare Reimbursement for Clinical Trials, H Aaron and H Gelband, eds., Washington, DC: National Academy Press, December 1999. (Supervision only, no authorship. This study was administratively housed with the Board, but the report was formally from IOM as a whole.) Ensuring Quality Cancer Care, M Hewitt and J Simone, eds., Washington, DC: National Academy Press, April 1999. (Supervision and editing only, no authorship.) Taking Action to Reduce Tobacco Use. National Academy Press, 1998. (Principal staff writer/editor.) Letter on tobacco control to Donna Shalala, Bruce Reed, and Members of Congress from the National Cancer Policy Board, July 19, 1997. (Staff author.) Background paper on Tobacco Control, July 1997. (Staff author. Background paper prepared for Board.) National Academy of Sciences Reports Strategies To Leverage Research Funding: Guiding DOD's Peer-Reviewed Medical Research Programs, Michael McGeary and Kathi E. Hanna, eds. Washington, DC, The National Academies Press, 2004. This study was supported by the National Academy of Sciences and the U.S. Department of Defense. (Committee member, principal writer of a few short sections; main writers were Kathi Hanna and Michael McGeary; chair was Joseph Pagano, University of North Carolina Cancer Center.) Allocating Federal Funds for Science and Technology. National Academy Press, 1995. (Senior Program Officer; staff writer for some sections and executive summary, and several background papers. Committee chair, Frank Press; study director, Norman Metzger. Other staff writers: Christopher Hill, Michael McGeary, and Julie Esanu.) Institute of Medicine Reports Preserving Public Trust: Accrediting Human Research Participant Protection Programs. Washington, DC: National Academy Press, 2001. (Primary staff writer for fast-track project; Chair, Daniel Federman, Harvard Medical School; study director, L Rodriguez; Division of Health Sciences Policy, Institute of Medicine.) The following reports were initiated and substantially completed in the Division of Biobehavioral Sciences and Mental Disorders, 1991-1994, while I was Division Director at the Institute of Medicine, National Academy of Sciences. The Development of Medications for the Treatment of Opiate and Cocaine Addictions, CE Fulco, CT Liverman, and LE Early, eds. Washington, DC: National Academy Press, 1995. (Supervision only, no authorship.)

21 Federal Regulation of Methadone Treatment, Richard A. Rettig and Adam Yarmolinsky, eds. Washington, DC: National Academy Press, 1995. (Supervision only, no authorship.) Growing Up Tobacco Free: Preventing Nicotine Addiction in Children and Youths, BS Lynch and RJ Bonnie, eds. Washington, DC: National Academy Press, 1994. (Co-author of first and last chapters. Overall supervision. Main writers were study director Barbara Lynch and committee member Richard Bonnie.) AIDS and Behavior: An Integrated Approach, JD Auerbach, C Wypijewska, H Keith and H Brodie, eds. Washington, DC: National Academy Press, 1994. (Wrote one section of one chapter on biology. Main writers were study director Judith Auerbach and her research associate, Christina Wypiejewska.) The Dynamic Brain, by Robert Pool for the Institute of Medicine Washington, DC: National Academy Press, 1994. (Supervision and editing only.) Reducing Risks of Mental Disorders: Frontiers of Preventive Intervention Research, PJ Mrazek and RJ Haggerty, eds. Washington, DC: National Academy Press, 1994. (Wrote one chapter section on specific disorders and sections of two policy chapters and aided in editing; main staff author/editor was study director, Patricia Mrazek.) Discovering the Brain, by Sandra Ackerman for the Institute of Medicine, Washington, DC: National Academy Press, 1992. (I was ghost author of James D. Watson preface and did overall project supervision.) Assessing Future Research Needs: Mental and Addictive Disorders in Women. C Pechura, ed. Washington, DC: Division of Health Sciences Policy and Division of Biobehavioral Sciences and Mental Disorders, Institute of Medicine, 1991. (No authorship. Main writer was study director, Constance Pechura.) Office of Technology Assessment Reports Reports are available at Princeton University's "OTA Legacy" website (http://www.princeton.edu/~ota/) and with more recent and higher quality scans at the Federation of American Scientists archive (http://fas.org/ota/). Mapping Our Genes ­ Genome Projects: How Big? How Fast? Project director. April, 1988. Reprinted by The Johns Hopkins University Press, Baltimore, Maryland, 1988; and Human Sciences Press, New York, 1988. Received Notable Documents of 1988 Award, National Library Association, 1989. (Author of executive summary and several chapters. Overall project director. Other staff authors: Patricia Hoben, Gladys White, Jacqueline Courteau and David Guston.) Losing a Million Minds: Confronting the Tragedy of Alzheimer's Disease and Other Dementias. Project director. April, 1987. Reprinted by JP Lippincott, Philadelphia, PA, as Confronting Alzheimer's Disease and Other Dementias, 1988, and by Human Sciences Press, 1988 under its original title. Listed among 20 Federal reports in Godort "Notable Documents" for 1987, and one of 17 "Historic Documents, 1987" by Congressional Quarterly. (Project director and author of congressional summary and chapter 3. Other chapter authors: Katie Maslow, L. Val Giddings, Dana Gelb [Safran], Teresa Schwab Myers, David Chavkin, Mary Ann Baily, Catherine Hawes and Nancy Mace.) Technology and Aging in America, June 1985. (Senior analyst, with primary responsibility for sections on biomedical research, chronic disorders, and medications.) Human Gene Therapy, December 1984. (Study director and principal author.) Impacts of Neuroscience, March 1984. (Study director and principal author.)

22 Commercial Biotechnology: An International Analysis. January, 1984. Reprinted by the North Carolina Biotechnology Center, Durham, NC, and Pergamon Press, Elmwood, NY. (Special Contributor. Author or co-author of a few short chapter sections and background papers. Main staff writers: Nanette Newell, Susan Clymer, Geoffrey Karny, Thomas Bugbee, James A. Thomas, Louise Williams and Raymond Zlinskas.) Short Communications and Letters Cook-Deegan R, and Rai A: Letter on "A Nail in the Coffin of DNA Sequence Patents?" Nature Biotechnology. 27(2):122, 2009. Magnus D, Cho M, and Cook-Deegan R. "Genetic-Test Firms Must Follow Law." San Jose Mercury-News. 11 July 2008. Cook-Deegan R, Berkelman R, Davidson EM, Finder S, Heitman E, Kelley MC, King NMP, Moseley R, Thomas JC, Tilden SJ, and Vangsnes NM: Letter on "Issues in Biosecurity and Biosafety" Science 308 (24 June): 1867-1868, 2005. Cook-Deegan R and Hogan B: "The Future of Human Cloning: Can we reap the benefits of therapeutic cloning without crossing ethical lines?" DukeMed Magazine Spring/Summer 2003; pp. 46-47. Cook-Deegan R, Walters L, Pressman L, Pau D, McCormack S, Gatchalian J, and Burgess R: "Preliminary Data about U.S. DNA-Based Patents and Plans for a Survey of Licensing Practices." Paper prepared for the DNA Sampling Conference, September 5-8, 2002 in Montreal, Canada. (Unpublished conference paper.) Cook-Deegan R: "Opportunities for WHO in Genomics." Background paper for World Health Organization, Geneva, Switzerland: 12 July 2000. (Prepared for Director General and her senior administrators; unpublished.) Alwan A and Cook-Deegan R: Memo on Genomics to World Health Organization Director General Gro Brundtland and her cabinet. 3 July 2000. Cook-Deegan R