Sanford School of Public Policy
Duke University
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Books
- Cook-Deegan, RM. The Gene Wars: Science, Politics and the Human Genome. W. W. Norton & Company, January, 1996. 416 pages pp. [abs]
- R.M. Cook-Deegan. The Gene Wars: Science, Politics, and the Human Genome. New York and London: WW Norton & Co.; paperback 1996, 1994. (The Alfred P. Sloan Foundation and the
National Science Foundation gave grants to
support this work through the Kennedy
Institute of Ethnics, Georgetown
University. 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)
Journal Articles
- Green, RC; Christensen, KD; Cupples, LA; Relkin, NR; Whitehouse, PJ; Royal, CD; Obisesan, TO; Cook-Deegan, R; Linnenbringer, E; Butson, MB; Fasaye, GA; Levinson, E; Roberts, JS. "A randomized noninferiority trial of condensed protocols for genetic risk disclosure of Alzheimer's disease.." Alzheimer's & Dementia 11.10 (October, 2015): 1222-1230. [doi] [abs]
- Grady, C; Eckstein, L; Berkman, B; Brock, D; Cook-Deegan, R; Fullerton, SM; Greely, H; Hansson, MG; Hull, S; Kim, S; Lo, B; Pentz, R; Rodriguez, L; Weil, C; Wilfond, BS; Wendler, D. "Broad Consent for Research With Biological Samples: Workshop Conclusions." American Journal of Bioethics 15.9 (September, 2015): 34-42. [doi]
- Cheon, JY; Mozersky, J; Cook-Deegan, R. "Variants of uncertain significance in BRCA: a harbinger of ethical and policy issues to come?." Genome Medicine: medicine in the post-genomic era 6.12 (December, 2014). [doi]
- Angrist, M; Cook-Deegan, R. "Distributing the future: The weak justifications for keeping human genomic databases secret and the challenges and opportunities in reverse engineering them.." Applied and Translational Genomics 3.4 (December, 2014): 124-127. [doi]
- van Zimmeren, E; Nicol, D; Gold, R; Carbone, J; Chandrasekharan, S; Baldwin, AL; Cook-Deegan, R. "The BRCA patent controversies: An international review of patent disputes." (September, 2014): 151-174. [doi]
- Cook-Deegan, R; Chandrasekharan, S. "Patents and genome-wide DNA sequence analysis: is it safe to go into the human genome?." The Journal of Law, Medicine & Ethics 42 Suppl 1 (January, 2014): 42-50. [doi] [abs]
- Angrist, M; Cook-Deegan, R. "Distributing the future: The weak justifications for keeping human genomic databases secret and the challenges and opportunities in reverse engineering them." Applied and Translational Genomics 3.4 (2014): 124-127. [doi]
- Caulfield, T; Evans, J; McGuire, A; McCabe, C; Bubela, T; Cook-Deegan, R; Fishman, J; Hogarth, S; Miller, FA; Ravitsky, V; Biesecker, B; Borry, P; Cho, MK; Carroll, JC; Etchegary, H; Joly, Y; Kato, K; Lee, SS; Rothenberg, K; Sankar, P; Szego, MJ; Ossorio, P; Pullman, D; Rousseau, F; Ungar, WJ; Wilson, B. "Reflections on the cost of "low-cost" whole genome sequencing: framing the health policy debate.." PLoS biology 11.11 (November, 2013): e1001699. [doi] [abs]
- Kesselheim, AS; Cook-Deegan, RM; Winickoff, DE; Mello, MM. "Gene patenting--the Supreme Court finally speaks.." The New England journal of medicine 369.9 (August, 2013): 869-875. [23841703], [doi]
- Rai, AK; Cook-Deegan, R. "Genetics. Moving beyond "isolated" gene patents.." Science 341.6142 (July, 2013): 137-138. [23811224], [doi]
- Agarwal, A; Sayres, LC; Cho, MK; Cook-Deegan, R; Chandrasekharan, S. "Commercial landscape of noninvasive prenatal testing in the United States.." Prenatal Diagnosis 33.6 (June, 2013): 521-531. [23686656], [doi] [abs]
- Cook-Deegan, R. "Genomics and Patents: A Practical Guide for Genome Scientists and Clinical Researchers." Genomic and Personalized Medicine 1 (2013): 464-473. [doi]
- Cook-Deegan, R. "Are human genes patentable?." Annals of internal medicine 159.4 (2013): 298-299. [doi]
- Gold, ER; Cook-Deegan, R; Bubela, T. "AMP v. Myriad: A surgical strike on blockbuster business models." Science Translational Medicine 5.192 (2013). [doi]
- Rai, AK; Cook-Deegan, R. "Moving beyond "isolated" gene patents." Science 341.6142 (2013): 137-138. [doi] [abs]
- Mathews, DJH; Cook-Deegan, R; Bubela, T. "Patents and misplaced angst: Lessons for translational stem cell research from genomics." Cell Stem Cell 12.5 (2013): 508-512. [doi] [abs]
- Cook-Deegan, R; Conley, JM; Evans, JP; Vorhaus, D. "The next controversy in genetic testing: clinical data as trade secrets?." European Journal of Human Genetics 21.6 (2013): 585-588. [doi] [abs]
- Wiechers, IR; Perin, NC; Cook-Deegan, R. "The emergence of commercial genomics: Analysis of the rise of a biotechnology subsector during the Human Genome Project, 1990 to 2004." Genome Medicine: medicine in the post-genomic era 5.9 (2013). [doi] [abs]
- Caulfield, T; Chandrasekharan, S; Joly, Y; Cook-Deegan, R. "Harm, hype and evidence: ELSI research and policy guidance.." Genome Medicine: medicine in the post-genomic era 5.3 (2013): 21. [23534337], [doi] [abs]
- Baldwin, AL; Cook-Deegan, R. "Constructing narratives of heroism and villainy: Case study of Myriad's BRACAnalysis® compared to Genentech's Herceptin®." Genome Medicine: medicine in the post-genomic era 5.1 (2013). [doi] [abs]
- Padmanabhan, S; Amin, T; Sampat, B; Cook-Deegan, R; Chandrasekharan, S. "Erratum: Intellectual property, technology transfer and manufacture of low-cost HPV vaccines in India (Nature Biotechnology (2010) 28 (671-678))." Nature Biotechnology 30.2 (2012): 193-. [doi]
- Cook-Deegan, R. "Law and science collide over human gene patents." Science 338.6108 (2012): 745-747. [doi] [abs]
- Cook-Deegan, R; Conley, JM; Evans, JP; Vorhaus, D. "The next controversy in genetic testing: clinical data as trade secrets?." European Journal of Human Genetics (2012). [doi] [abs]
- Cook-Deegan, R. "Genome-sequencing anniversary. Gene patents: the shadow of uncertainty.." Science 331.6019 (2011): 873-874. [doi]
- Cook-Deegan, R. "Boosting health services research." Science 333.6048 (2011): 1384-1385. [doi] [abs]
- Carbone, J; Gold, ER; Sampat, B; Chandrasekharan, S; Knowles, L; Angrist, M; Cook-Deegan, R. "DNA patents and diagnostics: not a pretty picture.." Nature Biotechnology 28.8 (August, 2010): 784-791. [20697400], [doi]
- Padmanabhan, S; Amin, T; Sampat, B; Cook-Deegan, R; Chandrasekharan, S. "Intellectual property, technology transfer and manufacture of low-cost HPV vaccines in India.." Nature Biotechnology 28.7 (July, 2010): 671-678. [20622834], [doi]
- Kepler, TB; Crossman, C; Cook-Deegan, R. "Metastasizing patent claims on BRCA1.." Genomics 95.5 (May, 2010): 312-314. [20226239], [doi] [abs]
- Powell, A; Chandrasekharan, S; Cook-Deegan, R. "Spinocerebellar ataxia: patient and health professional perspectives on whether and how patents affect access to clinical genetic testing.." Genetics in Medicine 12.4 Suppl (April, 2010): S83-S110. [20393313], [doi] [abs]
- Angrist, M; Chandrasekharan, S; Heaney, C; Cook-Deegan, R. "Impact of gene patents and licensing practices on access to genetic testing for long QT syndrome.." Genetics in Medicine 12.4 Suppl (April, 2010): S111-S154. [20393304], [doi] [abs]
- Chandrasekharan, S; Pitlick, E; Heaney, C; Cook-Deegan, R. "Impact of gene patents and licensing practices on access to genetic testing for hereditary hemochromatosis.." Genetics in Medicine 12.4 Suppl (April, 2010): S155-S170. [20393306], [doi] [abs]
- Chandrasekharan, S; Heaney, C; James, T; Conover, C; Cook-Deegan, R. "Impact of gene patents and licensing practices on access to genetic testing for cystic fibrosis.." Genetics in Medicine 12.4 Suppl (April, 2010): S194-S211. [20393308], [doi] [abs]
- Cook-Deegan, R; DeRienzo, C; Carbone, J; Chandrasekharan, S; Heaney, C; Conover, C. "Impact of gene patents and licensing practices on access to genetic testing for inherited susceptibility to cancer: comparing breast and ovarian cancers with colon cancers.." Genetics in Medicine 12.4 Suppl (April, 2010): S15-S38. [20393305], [doi] [abs]
- Colaianni, A; Chandrasekharan, S; Cook-Deegan, R. "Impact of gene patents and licensing practices on access to genetic testing and carrier screening for Tay-Sachs and Canavan disease.." Genetics in Medicine 12.4 Suppl (April, 2010): S5-S14. [20393311], [doi] [abs]
- Lyerly, AD; Steinhauser, K; Voils, C; Namey, 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; Wallach, E. "Fertility patients' views about frozen embryo disposition: results of a multi-institutional U.S. survey.." Fertility and Sterility 93.2 (February, 2010): 499-509. [19061998], [doi] [abs]
- Taylor, DH; Cook-Deegan, RM; Hiraki, S; Roberts, JS; Blazer, DG; Green, RC. "Genetic testing for Alzheimer's and long-term care insurance.." Health Affairs 29.1 (January, 2010): 102-108. [20048367], [doi] [abs]
- Cook-Deegan, R; Chandrasekharan, S; Sampat, B; Gold, ER; Carbone, J; Knowles, L. "Letter to editor." Nature Biotechnology 28.12 (2010): 1243-. [doi]
- Cook-Deegan, R; Heaney, C. "Gene patents and licensing: Case studies prepared for the secretary's advisory committee on genetics, health, and society." Genetics in Medicine 12.4 SUPPL. (2010): S1-S2. [doi] [abs]
- Skeehan, K; Heaney, C; Cook-Deegan, R. "Impact of gene patents and licensing practices on access to genetic testing for Alzheimer disease." Genetics in Medicine 12.4 SUPPL. (2010): S71-S82. [doi] [abs]
- Cook-Deegan, R; Heaney, C. "Patents in genomics and human genetics." Annual Review of Genomics and Human Genetics 11 (2010): 383-425. [doi] [abs]
- Cook-Deegan, R; Chandrasekharan, S; Angrist, M. "The dangers of diagnostic monopolies.." Nature 458.7237 (March, 2009): 405-406. [19325608], [doi]
- Cook-Deegan, R; Rai, AK. "DNA sequence patents are not in the grave yet.." Nature Biotechnology 27.2 (February, 2009): 122. [19204685], [doi]
- Magnus, D; Cho, MK; Cook-Deegan, R. "Direct-to-consumer genetic tests: Beyond medical regulation?." Genome Medicine: medicine in the post-genomic era 1.2 (2009). [doi] [abs]
- Green, RC; Roberts, JS; Cupples, LA; Relkin, NR; Whitehouse, PJ; Brown, T; Eckert, SL; Butson, M; Sadovnick, AD; Quaid, KA; Chen, C; Cook-Deegan, R; Farrer, LA. "Disclosure of APOE genotype for risk of Alzheimer's disease." The New England journal of medicine 361.3 (2009): 245-254. [doi] [abs]
- Chandrasekharan, S; Cook-Deegan, R. "Gene patents and personalized medicine - what lies ahead?." Genome Medicine: medicine in the post-genomic era 1.9 (2009): 92. [19804612], [doi] [abs]
- Colaianni, A; Cook-Deegan, R. "Columbia university's axel patents: Technology transfer and implications for the Bayh-Dole Act." The Milbank Quarterly 87.3 (2009): 683-715. [doi] [abs]
- So, AD; Sampat, BN; Rai, AK; Cook-Deegan, R; Reichman, JH; Weissman, R; Kapczynski, A. "Is Bayh-Dole good for developing countries? Lessons from the US experience.." PLoS biology 6.10 (October 28, 2008): e262. [18959484], [doi]
- 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; Sugarman, J. "Ethical and Practical Issues Associated with Aggregating Databases." PLoS Medicine 5.9 (September 23, 2008): e190. [journal.pmed.0050190], [doi]
- Fitzpatrick, SM; Cook-Deegan, R. "Science and democracy." Issues in science and technology 25.1 (2008): 19-20. [abs]
- Christensen, KD; Roberts, JS; Royal, CDM; Fasaye, GA; Obisesan, T; Cupples, LA; Whitehouse, PJ; Butson, MB; Linnenbringer, E; Relkin, NR; Farrer, L; Cook-Deegan, R; Green, RC. "Incorporating ethnicity into genetic risk assessment for Alzheimer disease: The REVEAL study experience." Genetics in Medicine 10.3 (March, 2008): 207-214. [doi] [abs]
- Karp, DR; Carlin, S; Cook-Deegan, R; Ford, DE; Geller, G; Glass, DN; Greely, H; Guthridge, J; Kahn, J; Kaslow, R; Kraft, C; MacQueen, K; Malin, B; Scheuerman, RH; Sugarman, J. "Ethical and practical issues associated with aggregating databases." PLoS medicine 5.9 (2008): 1333-1337. [doi]
- So, AD; Sampat, BN; Rai, AK; Cook-Deegan, R; Reichman, JH; Weissman, R; Kapczynski, A. "Is Bbayh-Dole good for developing countries? Lessons from the us experience." PLoS biology 6.10 (2008): 2078-2084. [doi]
- Pohlhaus, JR; Cook-Deegan, RM. "Genomics research: world survey of public funding.." BMC Genomics 9.10 (October, 2008): 472. [18847466], [doi] [abs]
- Cook Deegan, RM. "The Science Commons in Health Research: Structure, Function, and Value." Journal of Technology Transfer 32 (June, 2007): 133-156.
- Cook-Deegan, R. "Erratum: The science commons in health research: Structure, function, and value (Journal of Technology Transfer (2007) vol. 32 10.1007/ s10961-006-9016-9)." The Journal of Technology Transfer 32.3 (2007): 131-. [doi]
- Davidson, EM; Frothingham, R; Cook-Deegan, R. "Practical experiences in dual-use review." Science 316.5830 (June 8, 2007): 1432-1433. [17556571], [doi] [abs]
- Ginsburg, GS; Angrist, M; Cook-Deegan, R. "Public health. Genomics and medicine at a crossroads in Chernobyl.." Science 314.5796 (October, 2006): 62-63. [17023637], [doi]
- Caulfield, T; Cook-Deegan, RM; Kieff, FS; Walsh, JP. "Evidence and anecdotes: an analysis of human gene patenting controversies.." Nature Biotechnology 24.9 (2006): 1091-1094. [16964215], [doi]
- Tofano, D; Wiechers, IR; Cook Deegan, RM. "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 (Summer, 2006): 50-61.
- Lyerly, AD; Steinhauser, K; Namey, E; Tulsky, JA; Cook-Deegan, R; Sugarman, J; Walmer, D; Faden, R; Wallach, E. "Factors that affect infertility patients' decisions about disposition of frozen embryos.." Fertility and Sterility 85.6 (June, 2006): 1623-1630. [16678178], [doi] [abs]
- Pressman, L; Burgess, R; Cook-Deegan, RM; McCormack, SJ; Nami-Wolk, I; Soucy, M; Walters, L. "The licensing of DNA patents by US academic institutions: an empirical survey.." Nature Biotechnology 24.1 (January, 2006): 31-39. [16404390], [doi]
- Lyerly, AD; Steinhauser, K; Namey, E; Tulsky, JA; Cook Deegan, RM; Sugarman, J; Walmer, D; Faden, RR; Wallach, E. "Factors that Affect Infertility Patients’ Decisions about Frozen Embryos." Fertility and Sterility 85.6 (2006): 1620-1630.
- Ginsburg, GS; Angrist, M; Cook Deegan, RM. "Genomics and Medicine at a Crossroads in Chernobyl." Science 314 (2006): 62-63.
- Angrist, M; Cook-Deegan, RM. "Who owns the genome?." New Atlantis (Washington, D.C.) 11.11 (Winter, 2006): 87-96. [16789312]
- Cook-Deegan, R; Dedeurwaerdere, T. "The science commons in life science research: Structure, function, and value of access to genetic diversity." International Social Science Journal 58.188 (June, 2006): 299-317. [doi] [abs]
- Shanawani, H; Dame, L; Schwartz, DA; 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 32.12 (2006): 724-728. (doi: 10.1136/jme.2005.014456) [doi] [abs]
- Jr, JF; Wiechers, IR; 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 1.1 (2006): 7. [doi] [abs]
- Zick, CD; Mathews, CJ; Roberts, JS; Cook-Deegan, R; Pokorski, RJ; Green, RC. "Genetic testing for Alzheimer's disease and its impact on insurance purchasing behavior." Health Affairs 24.2 (March/April 2005): 483-490. [doi] [abs]
- Farah, MJ; Illes, J; Cook-Deegan, R; Gardner, H; Kandel, E; King, P; Parens, E; Sahakian, B; Wolpe, PR. "Neurocognitive enhancement: What can we do and what should we do?." Nature Reviews Neuroscience 5.5 (2004): 421-425. [abs]
- Cook Deegan, R. "Hype and Hope Introductory essay to "Scientists" Bookshelf Special Edition: Books of Life." American Scientist 89 (Jan-Feb, 2001): 62-64.
- Palmer, JG; Cook-Deegan, R. "National policies to oversee inheritable genetic modifications research." Designing Our Descendants: The Promises and Perils of Genetic Modifications (2003): 275-295. [abs]
- Bar-Shalom, A; Cook-Deegan, R. "Patents and Innovation in Cancer Therapeutics: Lessons from CellPro." Milbank Quarterly 80.4 (2002): 637-676. [doi] [abs]
- Cook-Deegan, RM; McCormack, SJ. "Patents, secrecy, and DNA." Science 293.5528 (July, 2001): 217. [doi]
- Cook-Deegan, RM; McCormack, SJ. "Intellectual property. Patents, secrecy, and DNA.." Science 293.5528 (July 13, 2001): 217. (http://www.sciencemag.org/cgi/content/full/2
93/5528/217 with webnote supplement
http://www.sciencemag.org/cgi/content/full/2
93/5528/217/DCI) [11452101], [doi]
- R.M. Cook-Deegan, A. Johnson, and C. Chan. "Global Genomics & Health Disparities: Emerging Issues for Nations and Populations." Journal of BioLaw and Business, Special Supplement (2001): 22-36.
- Cook-Deegan, RM; McCormack, SJ. "Intellectual property. Patents, secrecy, and DNA.." Science 293.5528 (2001): 217-.
- Cook-Deegan, RM. "Privacy, families, and human subject protections: some lessons from pedigree research.." The Journal of Continuing Education in the Health Professions 21.4 (Fall, 2001): 224-237. (http://www.jcehp.com/pdf/jcehp_21_4.pdf) [11803767], [doi] [abs]
- Cook-Deegan, RM. "Protecting the vulnerable in brain research.." Cerebrum : the Dana forum on brain science 2.2 (Spring, 2000): 73-91. [15986545] [abs]
- Cook-Deegan, RM. "Inner sanctum (vol 284, pg 589, 1999)." Science 284.5421 (June, 1999): 1776-1776. [Gateway.cgi]
- Cook-Deegan, RM. "Erratum: Inner sanctum (Science (April 23, 1999) (589))." Science 284.5421 (1999): 1776-.
- Cook-Deegan, RM. "Erratum: Inner sanctum (Science (April 1999) (589))." Science 284.5412 (1999): 1776-.
- Cook-Deegan, RM. "Commentary on "Distinguishing genetic from nongenetic medical tests: some implications for antidiscrimination legislation" (J.S. Alper and J. Beckwith)." Science and Engineering Ethics 4.2 (1998): 151-154. [11657771]
- Burris, J; Cook Deegan, R; Alberts, B. "The Genome Project after a Decade: Policy Issues." Nature Genetics 20.4 (1998): 333-335. [doi] [abs]
- Thomas, AM; Cohen, G; Cook-Deegan, RM; O'Sullivan, J; Post, SG; Roses, AD; Schaffner, KF; Green, RM. "Alzheimer testing at Silver Years.." Cambridge Quarterly of Healthcare Ethics 7.3 (1998): 294-307. [9663350]
- Burris, J; Cook-Deegan, R; Alberts, B. "The human genome project after a decade: Policy issues." Nature Genetics 20.4 (1998): 333-335. [doi] [abs]
- Cook Deegan, RM. "Does NIH Need a DARPA?." Issues in Science and Technology 13 (Winter, 1997): 25-28. (http://www.nap.edu/issues/13.2/cookde.htm)
- Allen, A; Anderson, B; Andrews, L; Beckwith, J; Bowman, J; Cook-Deegan, R; Cox, D; Duster, T; Eisenberg, R; Fine, B; Holtzman, N; King, P; Kitcher, P; McInerney, J; McKusick, V; Mulvihill, J; Murray, J; Murray, R; Murray, T. "The Bell Curve: Statement by the NIH-DOE joint working group on the ethical, legal, and social implications of human genome research [8]." The American Journal of Human Genetics 59.2 (1996): 487-488.
- Charo, RA; Cook-Deegan, RM; Eisenberg, RS; Geller, G; Finneran, K. "Roundtable: the politics of genetic testing.." Issues in science and technology 13.1 (1996): 48-54. [11654760]
- Relkin, N; Cook Deegan, R. "National Institute on Aging, Alzheimer's Association Working Group. Apolipoprotein E genotyping in Alzheimer's Disease." The Lancet 347 (1996): 1091-1095. (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, RM. "Tough Times, Tough Choices." The Bridge (Journal of the National Academy of Engineering) 25 (Fall, 1995): 2-4.
- 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; Cook-Deegan, RM. "Report card on the National Plan for Research on Child and Adolescent Mental Disorders: The midway point." Archives of General Psychiatry 52.9 (1995): 715-723. [abs]
- Cook Deegan, RM. "Genetics and the Social Ethics of Reseach (Editorial)." Amyloid 1 (December, 1994): 283-295.
- Cook Deegan, R; Fredrickson, DS; Joseph, SC; Rall, DP. "Medicine, Public Health and Environment." Issues in Science and Technology (Fall, 1994): 68-74.
- Cook-Deegan, RM. "Germ-line gene therapy: keep the window open a crack.." Politics and the Life Sciences 13.2 (1994): 217-220. [11654632]
- Cook Deegan, RM. "Private Parts." The Sciences (April, 1994): 18-23. (This is an adapatation 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, RM. "Origins of the Human Genome Project." Risk: Health, Science and Environment 5 (Spring, 1994): 97-118.
- Hanna, KE; Cook-Deegan, RM; Nishimi, RY. "Bioethics and public policy: still seeking a forum.." Politics and the Life Sciences 13.1 (February, 1994): 102-105. [11654818]
- Cook-Deegan, RM. "Gene quests and the social ethics of research." Amyloid 1.4 (January, 1994): 283-285. [doi]
- Bradt, DA; Geiger, HJ; Cook-Deegan, RM. "Physicians for human rights and the Kurdish refugee crisis [3]." Journal of the American Medical Association 271.10 (1994): 745-746.
- Cook-Deegan, R; Fredrickson, DS; Joseph, SC; Rall, DP. "10th Anniversary Colloquium. Medicine, public health, and environment.." Issues in science and technology 11.1 (1994): 68-74.
- Cook Deegan, RM; Eisenberg, R. "Patents, Technology Transfer, and Genome Research. Summary of a Franklin Pierce Law Center Conference." Human Genome News (1994): 6-7.
- Geiger, HJ; Cook-Deegan, RM. "The role of physicians in conflicts and humanitarian crises. Case studies from the field missions of Physicians for Human Rights, 1988 to 1993.." JAMA : the journal of the American Medical Association 270.5 (4 August 1993): 616-620. [8331762] [abs]
- Hanna, KE; Cook-Deegan, RM; Nishimi, RY. "Finding a forum for bioethics in U.S. public policy.." Politics and the Life Sciences 12.2 (1993): 205-219. [11654723]
- Cook-Deegan, RM. "Mapping the human genome.." Southern California law review 65.1 (November, 1991): 579-596. [11645845]
- Cavalli-Sforza, LL; Wilson, AC; Cantor, CR; Cook-Deegan, RM; King, MC. "Call for a worldwide survey of human genetic diversity: a vanishing opportunity for the Human Genome Project.." Genomics 11.2 (October, 1991): 490-491. [1769670]
- Sandler, RH; Epstein, PR; Cook-Deegan, RM; Shukri, A. "Initial medical assessment of Kurdish refugees in the Turkey-Iraq border region.." JAMA : the journal of the American Medical Association 266.5 (August, 1991): 638-640. [2072471]
- Watson, JD; Cook-Deegan, RM. "Origins of the Human Genome Project.." The FASEB journal : official publication of the Federation of American Societies for Experimental Biology 5.1 (1991): 8-11. [1991595] [abs]
- Kirkland, LR; Reid, KE; Cook-Deegan, RM. "Finnegans wake [1]." Southern Medical Journal 84.2 (1991): 283-.
- Cook-Deegan, RM. "The genesis of the Human Genome Project.." Molecular genetic medicine 1 (1991): 1-75. [1842569]
- Sandler, RH; Epstein, PR; Cook Deegan, R; Shukri, A. "Leeter from Cukurca: Initial Medical Assessment of Kurdish Refugees in the Turkey-Iraq Border Region." Journal of the American Medical Association 266 (7 August 1991): 638-640.
- Cavalli Sforza, LL; Wilson, AC; Cantor, CR; Cook Deegan, R; King, MC. "Call of a Worldwide Survey of Human Genetic Diversity: A Vanishing Opportunity for the Human Genome Project." Genomics 11.2 (1991): 490-491. [1769670]
- Cook Deegan, RM. "Mapping the Human Genome." Southern California Law Review 65.1 (1991): 1501-1518. [11645845]
- Cavalli-Sforza, LL; Wilson, AC; Cantor, CR; Cook-Deegan, RM; King, MC. "Call for a worldwide survey of human genetic diversity: A vanishing opportunity for the Human Genome Project." Genomics 11.2 (1991): 490-491.
- Watson, JD; Cook Deegan, R. "The Human Genome Project and Children of Tomorrow." California Pediatrician 6 (Fall, 1990): 7-8.
- Cook-Deegan, RM; Rossiter, BJ; Engel, L; Nelson, DL; Caskey, CT. "Report of the X chromosome workshop.." Genomics 7.4 (1990): 647-654. [2387592]
- Cook-Deegan, RM. "Social and ethical implications of advances in human genetics.." Southern Medical Journal 83.8 (1990): 879-882. [2382150]
- Cook-Deegan, RM; Guyer, M; Rossiter, BJ; Nelson, DL; Caskey, CT. "The large DNA insert cloning workshop.." Genomics 7.4 (August, 1990): 654-660. [2387593]
- Watson, JD; Cook-Deegan, RM. "The human genome project and international health.." JAMA : the journal of the American Medical Association 263.24 (1990): 3322-3324. [2348545]
- Cook Deegan, RM. "NIH-DOE Joint Working Group on Ethnical, Legal, and Social Issues Established." Human Genome News 2.5 (May, 1990).
- Watson, JD; Cook-Deegan, RM. "Perspective on the Human Genome project." Biofutur 94.94 (October, 1990): 65-68.
- Zweig, FM; Neuman, LK; Finesilver, S; Cook Deegan, R; Bezold, C. "The Plenary on Courts, Science, Technology and the Future." Courts, Health Science, and the Law 1 (1990): 194-204.
- Cook Deegan, RM; Guyer, M; Rossiter, BJF; Nelson, DL; Caskey, CT. "Report of the Large DNA Insert Cloning Workshop." Genomics 7.4 (1990): 654-660. [2387593]
- Cook-Deegan, RM. "Human gene therapy and congress.." Human Gene Therapy 1.2 (1990): 163-170. [2078577], [doi] [abs]
- Cook-Deegan, RM. "The Alta summit, December 1984.." Genomics 5.3 (1989): 661-663. (Reprinted in Human Genome: 1989-1990 Program
Report, US Department of Energy, Office of
Energy Research, Office of Health and
Environmental Research, DOE/ER-0446P, March
1990) [2613249]
- Hu, H; Cook Deegan, R; Shukri, A. "The Use of Chemical Weapons." Journal of the American Medical Association 262.5 (1989): 640-643. [abs]
- Hu, H; Cook-Deegan, R; Shukri, A; Fine, J. "The use of chemical weapons: Conducting an investigation using survey epidemiology." JAMA : the journal of the American Medical Association 262.5 (1989): 640-643. [abs]
- R.M. Cook-Deegan, editor and author. "Candle and Caduceus." Newsletter of the Amnesty International USA Professionals' Network 4.1 (June, 1988).
- Cook Deegan, RM; Whitehouse, PJ. "Alzheimer's Disease and Other Dementias: The Looming Crisis." Issues in Science and Technology 3 (Summer, 1987): 52-63.
- R.M. Cook-Deegan, co-editor. "Candle and Caduceus." Newsletter of the Amnesty International USA Health Professional Network 3.1 (May, 1987).
- Cook Deegan, RM. "On Mapping the Human Genome." Clinical Chemistry 33 (1987): 349-351. (Excerpts of the proposal for an OTA
assessment of mapping the human genome)
- Cook-Deegan, RM. "Dealing with the impact of dementia.." Business and health 3.9 (September, 1986): 26-28. [10317762]
- R.M. Cook-Deegan, editor and author. "Candle and Caduceus." Newsletter of the AIUSA Health Professional Networks 2.1 (March, 1986).
- Cook Deegan, RM. "Dementia and Federal Policy." American Journal of Alzheimer's Care 1.2 (Spring, 1986): 5-6.
- R.M. Cook-Deegan, editor and author. "Candle and Caduceus." Newsletter of the AIUSA Health Professional Networks 1.2 (Fall, 1985).
- R.M. Cook-Deegan, editor and author. "Candle and Caduceus." Newsletter of the AIUSA Health Professional Networks 1.1 (Spring, 1985).
- 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 4.9 (1984): 1935-1938. [6436690] [abs]
- Cook-Deegan, RM; Austin, JH. "Implications of normal lymphocyte DNA content in familial Alzheimer disease.." American Journal of Medical Genetics Part A 15.3 (1983): 511-513. [6881218], [doi]
- Cook Deegan, RM. "Letter: Medicine and Political Death." The PHAROS of Alpha Omega Alpha Honor Medical Society 45 (1982): 39.
- Cook Deegan, RM. "Letter: The researcher as a Congressional director." Trends in Biochemical Sciences 7 (1982): 434.
- Cook, RH; Schneck, SA; Clark, DB. "Twins with Alzheimer's disease." Archives of Neurology 38.5 (1981): 300-301. [abs]
- 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 1.1 (1981): 43-50. [abs]
- Cook Deegan, RM. "The Narrow Gauge (reply)." New England Journal of Medicine 302 (1980): 63-64.
- Cook Deegan, RM. "The Narrow Gauge (Sounding Board)." New England Journal of Medicine 301 (1979): 500-501.
- Cook, RH. "Memory loss in Alzheimer disease." Annals of Neurology 5.1 (1979): 105-106.
- Ward, BE; Cook, RH; Robinson, A; Austin, JH. "Increased aneuploidy in Alzheimer disease." American Journal of Medical Genetics 3.2 (1979): 137-144. [abs]
- Cook, RH; Ward, BE; Austin, JH. "Studies in aging of the brain: IV. Familial Alzheimer disease: relation to transmissible dementia, aneuploidy, and microtubular defects." Neurology 29.10 (1979): 1402-1412. [abs]
- Cook, RH; Austin, JH. "Precautions in familial transmissible dementia. Including familial Alzheimer's disease." Archives of Neurology 35.11 (1978): 697-698. [abs]
Chapters in Books
- Chandrasekharan, S; Perin, NC; Wiechers, IR; Cook-Deegan, R. "Public-Private Interactions in Genomic Medicine: Research and Development." Genomic and Personalized Medicine.
Ed. Huntington F. Willard and Geoffrey S. Ginsburg Elsevier, October, 2008: 434-444. [doi]
- R. Cook-Deegan, K.N. Lohr, and J.H. Palmer. "How Bioethics Can Inform Policy Decisions About Genetic Enhancement." Altering Nature: Religion, Biotechnology and Public Policy. 2008: 161-198.
- R. Cook-Deegan. "Gene Patents." From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns. Hastings Center, 2008: 69-72.
- Cook-Deegan, R; McGeary, M. "The Jewel in the federal crown?: History, politics, and the National Institutes of Health." History and Health Policy in the United States: Putting the Past Back In.
Ed. Rosemary A. Stevens, Charles E. Rosenberg, Lawton R. Burns New Brunswick: Rutgers University Press, 2006: 176-201. [abs]
- R.M. Cook-Deegan. "The Colossus of Codes." Inspiring Science: Jim Watson and the Age of DNA.
Ed. John Inglis, Joseph Sambrook, and Jan Witkowski Cold Spring Harbor Press, 2003: 387-393.
- Palmer, JG; Cook-Deegan, R. "National policies to oversee inheritable genetic modifications research." Designing Our Descendants: The Promises and Perils of Genetic Modifications.
Ed. Audrey R. Chapman and Mark S. Frankel Baltimore, MD: Johns Hopkins University Press, 2003: 275-295. [abs]
- R.M. Cook-Deegan. "Gene Patents: Why Secrecy is Destructive to Innovation." Chapter in Comercial Implications for Genomics. Cambridge, MA: Healthtech Institute, 2002
- R. Cook-Deegan. "Medical Biotechnology, United States Policy Influencing Its Development." Encyclopedia of Ethnical, Legal and Policy Issues in Biotechnology.
Ed. Thomas H. Murray and Maxwell J. Mehlman New York: John Wiley & Sons, 2000: 798-809.
- R. Cook-Deegan. "Government Policy and the Commercial Value of Academic Information." AAAS Science and Technology Policy Yearbook 2000.
Ed. Teich AH, Nelson SD, McEnaney C., and Lita SJ 2000: 273-289.
- R. Cook-Deegan. "The Genetics of Alzheimer's Disease: Some Future Implications." Concepts of Alzheimer Disease: Biological, Clinical and Cultural Perspectives.
Ed. Peter J. Whitehouse, Konrad Maurer, and Jesse F. Ballenger Baltimore, MD: Johns Hopkins University Press, 2000: 269-290.
- R. Cook-Deegan. "National Policies Influencing Innovation Based on Human Genetics." The Commercialization of Genetic Research: Ethical, Legal, and Policy Issues.
Ed. Tim Caulfield and Bryn Williams-Jones New York: Plenum, 1999: 13-27. Based in part on a talk in Edmonton,
Alberta, September 1998
- R.M. Cook-Deegan. "Some Questions Arising in the Commercial Development of Genetic Tests for Alzheimer's Disease." Chapter 6 of Genetic Testing for Alzheimer's Disease: Ethnic and Clinical Issues.
Ed. S Post and P Whitehouse Baltimore, MD: Johns Hopkins University Press, 1998: 84-100.
- R.M. Cook-Deegan. "Confidentiality, Collective Resources, and Commercial Genomics." Chapter 9 in Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era.
Ed. MA Rothstein New Haven, CT: Yale University Press, 1997: 161-183.
- R.M. Cook-Deegan. "Bioethics and the Federal Government: Some Implications for Psychiatric Genetics." Chapter for Genetics and Mental Illness.
Ed. LL Hall New York, Plenum Press, 1996: 189-218.
- R.M. Cook-Deegan. "Genome Mapping and Sequencing." Encyclopedia of Bioethics.
Ed. ET Reich, Editor-in-Chief; JC Fletcher, Genetics Section Editor; M Solberg, Project Editor New York: Macmillan, 1995: 1011-1019.
- R.M. Cook-Deegan. "Ethical Issues Arising in the Search for Neurological Disease Genes." 1994 Proceedings of a conference held November
19-21, 1993, Fukui, Japan, N. Fujiki and D.
Macer, Eds. Christchurch, NZ: Eubios Ethics
Institute, 1994. 81-92. Japanese
translation available. Tsukuba Science
City, Japan: Eubios Ethics Institute, 1994
- P.J. Whitehouse and R. Cook-Deegan. "Epilogue." Dementia.
Ed. Peter J. Whitehouse, Ed., Fred Plum, Editor-In-Chief Contemporary Neurology Series (Philadelphia: F.A. Davis)1993: 435-441.
- R.M. Cook-Deegan. "Trends in Science, Technology, and Drug Discovery." Office of Technology Assessment, US Congress, Report 0TA-H-522 (Washington, DC: Government Printing Office), 1993: 105-134.
- R.M. Cook-Deegan. "Roots of Controversy: Origins of the Human Genome Project." May 24-26, 1993 Keynote address for international
conference "El Derecho Ante el Proyector
Genoma Humano (The Human Genome Project:
Legal Aspects)" at the University of Deusto
and the Diputacion Foral de Bizkaia in
Bilbao, Spain, May 24-26, 1993. Reprinted
in The Human Genome Project: Legal Aspects,
Volume 1, including a chronology of the
human genome project. Bilbao, Spain:
Fundacion BBC, 1995. 67-89
- R.M. Cook-Deegan and J.D. Watson. "The Human Genome Project." 1992 Yearbook of Science and Technology.
Ed. Sybil P. Parker, Editor-in-Chief New York: McGraw-Hill, 1992: 204-205 and 207.
- R.M. Cook-Deegan. "Genesis of the Human Genome Project." Molecular Genetic Medicine.
Ed. T Friedmann San Diego, CA: Academic Press, 1991: 1-75.
- R.M. Cook-Deegan. "The Human Genome Project: Formation of Federal Policies in the United States, 1986-1990." Biomedical Politics.
Ed. K Hanna Washington, DC: National Academy Press, 1991 Commissioned by the Committee to Study
Decision-making, Institute of Medicine,
National Academy of Sciences
- R.M. Cook-Deegan, H. Hu, and A. Shukri. "Winds of Death: Iraqi's Use of Poison Gas Against Its Kurdish Population." Chapter in Death Clouds: Saddam Hussein's Chemical War against the Kurds.
Ed. D Ala'aldeen Kurdish Scientific and Medical Association, London, 1991
- R.M. Cook-Deegan. "The Human Genome Project, 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, FL, 4
November 1990
- R.M. Cook-Deegan. "Public Policy Implications of the Human Genome Project." July 22-27, 1990 Proceedings of the XXIVth CIOMS Conference,
Tokyo and Inuyama City, Japan. Council for
International Organizations of Medical
Sciences (CIOMS). 56-71, 1991. (Served also
as a rapporteur for Group C: Human Gene
Therapy, in this volume, and assisted Alex
Capron, Ronald Worton and Nancy Wexler in
editing reports from Work Groups A and B
- R.M. Cook-Deegan. "Some Implications of Mapping the Human Genome." September, 1989 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-
Universitat Bochum, Zentrum fur
Medizinische Ethik. Translated into German
and reprinted as "Herausforderungen bei DNS-
Kartierung und-Sequenzierung" in
Genomanalyse und Gentherapie, Hans-Martin
Sass, Ed. (Heidelberg, Springer-Verlag,
1991, 171-196
- R.M. Cook-Deegan, Hu H, and Shukri A. "Winds of Death: Iraq's Use of Poison Gas against Its Kurdish Population." February, 1989 Report of a Medical Mission to Turkish
Kurdistan. Somerville, MA: Physicians for
Human Rights. 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
- R.M. Cook-Deegan. "Changing Public Policy for Dementia Care." Dementia Care: Patient, Family, and Community.
Ed. NL Mace Baltimore, MD: The Johns Hopkins University Press, 1989: 374-392.
- R.M. Cook-Deegan and L.A. Winters-Miner. "Appendix: Research bibliography on familial Alzheimer's disease." Familial Alzheimer's Disease: Molecular Genetics and Clinical Perspectives.
Ed. GD Miner, RW Richter, JP Blass, JL Valentine, and LA Winters-Miner New York: Marcel Dekker, 1989: 397-408.
- R.M. Cook-Deegan. "Proposed Definitions." Caring of Alzheimer's Patients: A Guide for Family and Healthcare Providers.
Ed. GD Miner, RW Richter, JP Blass, JL Valentine, and LA Winters-Miner New York: Plenum, 1989
- R.M. Cook-Deegan. "Alzheimer's Disease and Public Policy." Cating for Alzheimer's Patients: A Guide for Family and Healthcare Providers.
Ed. GD Miner, RW Richter, JP Blass, JL Valentine, and LA Winters-Miner New York: Plenum, 1989
- R.M. Cook-Deegan. "The Physician and Technological Change." The Physician as Captain of the Ship.
Ed. NMP King, LR Churchill, and AW Cross Boston: D Reidel, 1988: 125-158. 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
- R.M. Cook-Deegan. "Bioethik und Politik." Bioethik in de USA.
Ed. HM Sass Berlin: Springer-Verlag, 1988: 141-168. Translated by HM Sass and others at Zentrum
fur Medizinische Ethik Bochum, Ruhr-
Universitat, Bochum, Germany
- R.M. Cook-Deegan. "Ethical Analysis and Public Policy." March, 1987 Paper for the Ministry of Science and
Technology, Federal Republic of Germany;
translated into German as "Bioethische
Bewertung Im Auftrage Der US-
Bundesregierung," Heft 13, Zentrum fur
Medizinische Ethik Bochum, Ruhr-Universitat
Bochum, Postfach 102 148 D-4630 Bochum 1,
Germany, January 1988
- R.M. Cook-Deegan. "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.
Ed. HAMJ ten Have and HM Sass Kluwer Press, 1987: 107-140.
- R.M. Cook-Deegan. "Public Policy and Dementia: Implications for New Product Development." Neurological Disorders: Recent Advances in Diagnostics and Drug Development. Yorktown Heights, NY: Communitech, November, 1986
Book Reviews
- R.M. Cook-Deegan. Hype and Hope. Introductory essay to "Scientists' Bookshelf Special Edition: Books of Life. American Scientist 89
(Jan-Feb 2001): 62-64.
- R.M. Cook-Deegan. Review of Brain Policy: How the New Neurosceince Will Change Out Lives and Our Politics by Robert H. Blank. Cerebrum 1
(Spring, 1999): 104-109.
- R.M. Cook-Deegan. Review of the The Baltimore Case: A Trial of Politics, Science, and Character by Daniel Kevles. Recent Science Newsletter 1
(Spring, 1999): 8-10.
- R.M. Cook-Deegan. Review of Clone: The Road to Dolly and the Path Ahead by Gina Kolata. Issues in Science and Technology 14
(Spring, 1998): 90-95.
- R.M. Cook-Deegan. Review of The Moral Challenge of Alzheimer's Disease by Stephen Post. New England Journal fo Medicine 334
(May 2, 1996): 1204.
- R.M. Cook-Deegan. Review of Alzheimer's Disease Research: Ethical and Legal Issues. New England Journal of Medicine 327
(1992): 60-61.
- R.M. Cook-Deegan. A Landmark in Medical Genetics. Review of Ethnics and Human Genetics: A Cross Cultural Perspective. ed. Werta and Fletcher. Bioethics Books. 1.4 1990
- R.M. Cook-Deegan. Scientists and the Dawn of Industrial Pharmacology. Review of Academic Scientist and the Pharmaceutical Industry by John Swann. Medical Humanities Review 3
(January, 1989): 84-86.
- R.M. Cook-Deegan. Review of Biotechnology and the Human Genome. ed. Woodhead and Barnhart. Bioscience 39
(1989): 402-403.
- R.M. Cook-Deegan. Review of Invisible Frontiers by Stephen Hall and Natural Obsessions by Natalie Angier. Journal of the American Medical Association 261
(February 3, 1989): 773-773.
Op-eds
- D. Magnus, M. Cho, and R. Cook-Deegan. Genetic-Test Firms Must Follow Law. San Jose Mercury-News
(July 11, 2008).
Submitted
- C. Heaney, J. Carbone, E.R. Gold, T. Bubela, C.M. Holman, A. Colaianni, T. Lewis, and R. Cook-Deegan. "The Perils of Taking Property Too Far." Stanford Journal of Law, Science & Policy (November, 2008).
- R.M. Cook-Deegan and A.K. Rai. "DNA Sequence Patents Are Not In the Grave Yet (Letter)." Nature Biotechnology (October, 2008).
- D. Magnus, M.K. Cho, and R. Cook-Deegan. "US Regulation of Direct-to-Consumer Genetic Tests." Genome Medicine (August, 2008).
- R.M. Cook-Deegan and N. Prabhakar. "The Context for Secrecy and Conflicts between Commercial and Scientific Roles in Academic Health Research." Ethical Issues in the Management of Financial Conflicts of Interest in Biomedical Research (2005). Chapter submitted to The Hastings Center for a report and book on conflicts of interest in health research
Other
- M. Angrist, S. Chandrasekharan, C. Heaney, and R. Cook-Deegan. "Intellectual Property and Its Impact on Genetic Testing for Long QT Syndrome." (December, 2008). Peer-reviewed case study submitted for discussion at the Secretary’s Advisory Committee on Genetics, Health, and Society
- S. Chandrasekharan, C. Heaney, T. James, C. Conover, and R.M. Cook-Deegan. "Impact of Gene Patents and Licensing Practices on Access to Genetic Testing for Cystic Fibrosis." (December, 2008). Peer-reviewed case study submitted for discussion at the Secretary’s Advisory Committee on Genetics, Health, and Society
- S. Chandrasekharan, E. Pitlick, C. Heaney, and R. Cook-Deegan. "Impact of Patents and Licensing on Access to Genetic Testing for Hereditary Hemochromatosis." (December, 2008). Peer-reviewed case study submitted for discussion at the Secretary’s Advisory Committee on Genetics, Health, and Society
- R. Cook-Deegan,C. DeRienzo, J. Carbone, S. Chandrasekharan, C. Heaney, and C. Conover. "Impact of Gene Patents on Access to Genetic Testing for Inherited Susceptibility to Cancer: Comparing Breast and Ovarian Cancers to Colon Cancers." (December, 2008). Peer-reviewed case study submitted for discussion at the Secretary’s Advisory Committee on Genetics, Health, and Society
- A. Colaianni, S. Chandrasekharan, and R. Cook-Deegan. "Impact of Patents and Licensing Practices on Access to Genetic Testing and Carrier Screening for Tay-Sachs and Canavan Disease." (December, 2008). Peer-reviewed case study submitted for discussion at the Secretary’s Advisory Committee on Genetics, Health, and Society
- A. Powell, S. Chandrasekharan, and R. Cook-Deegan. "Spinocerebellar Ataxia: Patient and Health Professional Perspectives on Whether and How Patents Affect Access to Clinical Genetic Testing." (December, 2008). Peer-reviewed case study submitted for discussion at the Secretary’s Advisory Committee on Genetics, Health, and Society
- K. Skeehan, C. Heaney, and R. Cook-Deegan. "Impact of Patents and Licensing Practices on Access to Genetic Testing for Alzheimer’s Disease." (December, 2008). Peer-reviewed case study submitted for discussion at the Secretary’s Advisory Committee on Genetics, Health, and Society
- J. Staples, R. Cook-Deegan, and G.S. Ginsburg. "The Role of the Academic Medical Center in Advancing Personalized Health Care." Personalized Health Care: Pioneers, Partnerships, Progress (November, 2008): 75-99. Commissioned paper in report prepared by the Initiative on Personalized Health Care, Department of Health and Human Services
- R.M. Cook-Deegan. "Blogger." Issues in Science and Technology (online version of the journal only) (Spring-Winter, 2006). Administered by the Green Center at University of Texas, Dallas, and the National Academies
- R.M. Cook-Deegan, J.C. Venter, W. Gilbert, J. Mulligan, and B.K. Mansfield. "DNA Sequencing Conference, II. Meeting summary." (2006).
- R.M. Cook-Deegan, J.C. Venter, M.L. Pearson, and B.K. Mansfield. "The Genome Project and the Pharmaceutical Industry. Meeting summary." (2006).
- Cook-Deegan, RM; Berkelman, R; Davidson, EM; Finder, S; Heitman, E; Kelley, MC; King, NM; Moseley, R; Thomas, JC; Tilden, SJ; Vangsnes, NM. "Issues in biosecurity and biosafety.." Science 308.5730 (June 24, 2005): 1867-1868. [15976287], [doi]
- A. So, A.R. Rai, and R.M. Cook-Deegan. "Intellectual Property Rights and Technology Transfer: Enabling Access for Developing Countries." Submitted to the World Health Organization. (Spring, 2005). Commissioned Report for the World Health Organization Commission on Intellectual Property Rights, Innovation, and Public Health
- R.M. Cook-Deegan. "How Health Research Got So Big in the United States." Research Policy Alert (formerly "The Blue Sheet" and Washington Fax) (June 22, 2005). Experts Forum (on line resource), (posted
for several weeks as a special feature
- R. Hubbard, R.M. Cook-Deegan, J.C. Venter, and J.Q. Wilson. "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." PRIM&R (2005): 257-260.
- R.M. Cook-Deegan (Committee member, principal writer of a few short sections; main writers were Kathi Hanna and Michael McGeary). "Strategies To Leverage Research Funding: Guiding DOD's Peer-Reviewed Medical Research Programs." National Academy of Science Report Washington, DC: The National Academies Press. (2004). This study was supported by the National
Academy of Sciences and the U.S. Department
of Defense
- R. Cook-Deegan and B. Hogan. "The Future of Human Cloning: Can We Reap the Benefits of Therapeutic Cloning without Crossing Ethical Lines?." DukeMed Magazine (Spring/Summer 2003): 46-47.
- R. Cook-Deegan. "The Urge to Commercialize: Interactions between Public and Private Research and Development." Washington, D.C.: National Academy Press. (2003). Section in Proceedings of the Symposium on
the Role of Scientific and Technical Data
and Information in the Public Domain,
National Academy of Sciences.
- R. Cook-Deegan. "Alzheimer's Disease: Tracing the Genetic Link." Saturday Evening Post (May-June 1999): 22-27, 89-92. excerpt chapter one of The Gene Wars
with an interview and update with Patrick
Perry
- R.M. Cook-Deegan. "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. (2003): 87-94.
- R.M. Cook-Deegan. "The HHMI Presence in Policy." (March, 2002). A background paper prepared for the Howard
Hughes Medical Institute
- R.M. Cook-Deegan, 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." (September 5-8, 2002). Paper prepared for the DNA Sampling
Conference in Montreal, Canada
- R.M. Cook-Deegan. "CellPro: a case study in intellectual property related to cancer therapeutics." background memo (June, 2001). National Cancer Policy Board Reports
- R.M. Cook-Deegan. "Preserving Public Trust: Accrediting Human Research Participant Protection Programs." Institute of Medicine Reports Washington, DC: National Academy Press. (2001). http://books.nap.edu/catalog/10085.html.
(Primary staff writer for fast-track
project; Chair, D Federman; study director,
L Rodriguez; Division of Health Sciences
Policy, Institute of Medicine
- R.M. Cook-Deegan. "Final Report to the World Health Organization and Global Forum for Health Research." (September, 2000). Also posted at
http://wwww.stanford.edu/class/siw198q/genomics
- R.M. Cook-Deegan. "Background paper for World Health Organization, Geneva Switzerland: Opportunities for WHO in Genomics." (July 12, 2000).
- A. Alwan and Cook-Deegan R. "Memo on Genomics to World Health Organization Director General Gro Brundtland and her Cabinet." (July 3, 2000).
- R.M. Cook-Deegan, A. Johnson, and C. Chan. "World Survey of Genomics Research Funding, Interim Report." Submitted to the World Health Organization and Global Forum for Health Research (July, 2000). with presentation of summary findings to the
Office for Economic Cooperation and
Development, Paris
- R.M. Cook-Deegan. "State Programs Can Reduce Tobacco Use." National Cancer Policy Board Reports (February, 2000). http://books.nap.edu/catalog/9762.html
- R.M. Cook-Deegan. "Genomics and drug development: Some examples from cancer research." (October 26, 2000). Presented to the Foundacíon de Ciencias
de Salud, Madrid; reprinted in Foundational
annual report and conference summary.
http://www.fcs.es/fcs/esp/interiores/conferen
cias/ciencia/ciencia14/index 14.htm
- "Expanding Medicare Reimbursements for Clinical Trials." National Cancer Policy Board Reports Washington, DC: National Academy Press. (December, 1999). http://books.nap.edu/catalog/9742.html.
(Supervision only, no authorship. This
study was administratively housed with the
Board, but the report was formally from IOM
as a whole
- R.M. Cook-Deegan. "Moderator of online forum on gene therapy." American Scientist (May, 1999). http://www.amsci.org/amsci/editors/bcdcomment
s.html
- "Ensuring Quality Cancer Care." National Cancer Policy Board Reports Washington, DC: National Academy Press. (April, 1999). http://books.nap.edu/catalog/6467.html.
(Supervision and editing, no authorship
- R.M. Cook-Deegan. "Government Policy and the Commercial Value of Academic Information." (March, 1999). Based on a talk to the AAAS-MIT
symposium "Secrecy in Science: Exploring
University, Industry, and Government
Relationships," at Kresge Auditorium, MIT
campus,
http://www.aaas.org/spp/secrecy/Presents/cook
dee.htm
- Cook-Deegan, RM; Schiff, H. "Inner sanctum [4] (multiple letters)." Science 284.5414 (April 23, 1999): 589+591. http://www.sciencemag.org/cgi/content/summary/284/
5414/589a
[10328738]
- R.M. Cook-Deegan (principal staff writer/editor). "Taking Action to Reduce Tobacco Use." National Academy Press. (1998). http://nap.edu/readingroom/books/tobacco
- R.M. Cook-Deegan. "Commentary on "Can Patents Deter Innovation? The Anticommons in Biomedical Research" by Michael A. Heller and Rebecca S. Eisenberg." Science 280 (1998): 698-701. http://www.sciencemag.org/feature/data/98046
5/cook_deegan.shl
- Cook-Deegan, RM. "Insulin gene patent litigation.." Science 278.5338 (1997): 560-561. [9381158]
- R.M. Cook-Deegan (staff author). "Background paper on Tobacco Control." National Cancer Policy Board Reports (July, 1997).
- R.M. Cook-Deegan. "Do Research Moratoria Work? Lessons from Fetal Research, Gene Therapy, and Recombinant DNA Research." (April, 1997). Background paper for the National Bioethnics
Advisory Commission pertinent to its
deliberations on human cloning.
http://www.georgetown.edu/research/nrcbl/nbac
/pubs/cloning2/cc8.pdf
- R.M. Cook-Deegan (staff author). "Letter on tobacco control to Donna Shalala, Bruce Reed, and Members of Congress from the National Cancer Policy Board." (July 19, 1997).
- F. Press, N. Metzger, and R. Cook-Deegan. "Letter re Robinson's commentary "Budget Battles." Issues in Science and Technology 12 (Fall, 1996): 5-6.
- Cook-Deegan, RM; Walters, L; Goldstein, D; McCormack, S. "Ownership of human genes.." Nature 382.6586 (July 4, 1996): 17-18. [8657294], [doi]
- R.M. Cook-Deegan. "Letter re "Research Funding"." Issues in Science and Technology 12 (Summer, 1996): 18.
- R.M. Cook-Deegan. "Merit Review of Federally Funded Science and Technology." White Paper for the Council of the National Academy of Sciences (February, 1996).
- R.M. Cook-Deegan. "Background Paper on Competitive Merit Review prepared for the National Academy of Sciences' Council." (February, 1996).
- Charo, RA, Cook-Deegan R, Eisenberg RS, Geller G and Finneran K. "The Politics of Genetic Testing." Issues in Science and Technology XIII (1996): 48-54. based on a March 1996 roundtable discussion
sponsored by North Lake College, Dallas,
Texas
- R.M. Cook-Deegan. "Survey of Reports on Federal Laboratories." (May, 1995). 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
- R.M. Cook-Deegan. "Previous Analyses of the U.S. R&D Allocation Process." (January, 1995). Background paper for the Committee on
Criteria for Federal Support of Research
and Development, National Academy of
Sciences, January 1995. Available through
the Commission on Physical Sciences,
Mathematics, and Applications, National
Research Council, Washington, DC
- R.M. Cook-Deegan. "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
- "The Development of Medications for the Treatment of Opiate and Cocaine Addictions." Washington, DC: National Academy Press. (1995). Supervision only, no authorship
- "Federal Regulation of Methadone Treatment." Washington, DC: National Academy Press. (1995). Supervision only, no authorship
- R.M. Cook-Deegan. "Introduction. In Lois Bristow, Will I Be Next? Bea Gorman's Life Story." Acampo, CA: Hope Warren Press. (1995): 13-14.
- R.M. Cook-Deegan. "Some Issues in Federal Technology Transfer and Ways to Study Them." (November, 1994). White paper prepared for the Office of
Science and Technology Policy, 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
- R.M. Cook-Deegan. "Survey of Genome Research Corporations." (March, 1994). Contract report on financial and technical
background of genome research startup firms
prepared for the Office of Technology
Assessment, US Congress, for its report on
DNA patenting
- R.M. Cook-Deegan. "Introduction: Genes and Families." (1994). 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, 3-7
- R.M. Cook-Deegan (Coauthor of first and last chapters). "Growing Up Tobacco Free: Preventing Nicotine Addiction in Children and Youths." Washington, DC: National Academy Press. (1994). Overall supervision. Main writers were
study director Barbara Lynch and committee
member Richard Bonnie
- R.M. Cook-Deegan (wrote one section of one chapter biology). "AIDS and Behavior: An Integrated Approach." Washington, DC: National Academy Press. (1994). Main writers were study director Judith
Auerbach and her research associate
Christina Wypiejewska
- by R Pool for the Institute of Medicine. "The Dynamic Brain." Washington, DC: National Academy Press. (1994). Supervision and editing only
- "Development of Anti-Addiction Medications: Issues for the Government and Private Sector." Washington, DC: Divsion of Biobehavioral Sciences and Mental Disorders, Institute of Medicine. (1994). Supervision only
- R.M. Cook-Deegan (Wrote one chapter section on specific disorders and sections of two policy chapters and aided in editing). "Reducing Risks of Mental Disorders: Frontiers of Preventive Intervention Research." Washington, DC: National Academy Press. (1994). main staff author/editor was study director
Patricia Mrazek
- by S Ackerman for the Institute of Medicine. "Discovering the Brain." Washington, DC: National Academy Press. (1992). Ghost author of James D. Watson preface
- R.M. Cook-Deegan. "Assessing Future Research Needs: Mental and Addictive Disorders in Women." 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
- R.M. Cook-Deegan. "Poison Gas Attacks Against Iraqi Kurds." Testimony before the Human Rights Caucus, US Congress (October 24, 1989).
- Schaller JM and Cook-Deegan R. "Panama 1987: Health Consequences of Police and Military Actions." Physicians for Human Rights, Somerville, MA (April, 1988).
- R.M. Cook-Deegan (project director). "Mapping Our Genes - Genome Projects: How Big? How Fast?." (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.
Report available at:
http://www.wws.princeton.edu/~ota/
- R.M. Cook-Deegan. "Coordination of Genome Projects." (1988): 77-89. 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, 1988
- R.M. Cook-Deegan. "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, U.S. Congress. Washington,
DC: Government Printing Office, 1988. 17-26,
29-36
- R.M. Cook-Deegan (project director). "Losing a Million Minds: Confronting the Tragedy of Alzheimer's Disease and Other Dementias." (April, 1987). Reprinted by JP Lippincott, Philadelphia,
Pennsylvania, as Confronting Alzheimer's
Disease and Other Dementias, 1988, and by
Human Sciences Press, 1988 under its
original title. Listing 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 executive director
and chapter 3. Other chapter authors: Katie
Maslow, L. Val Giddings, Dana Gelb, Teresa
Schwab Myers, David Chavkin, Mary Ann
Baily, Catherine Hawes, and Nancy Mace.
Report available at
http://www.wws.princeton.edu/~ota/
- R.M. Cook-Deegan. "Epidemiology, in session of Alzheimer's disease." (January, 1987). 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 UCLA Clinical Research
Center for the Study of Psychopathology in
the Elderly, UCLA Neuropsychiatric
Institute, UCLA Department of Psychiatry,
and American Association for Geriatric
Psychiatry, Los Angeles, CA: UCLA
- R.M. Cook-Deegan. "Recent Progress on Services for Alzheimer's Disease and Other Dementias." Government Printing Office. (August 19, 1987): 28-36. Statement before the Subcommittee on Aging,
Senate Committee on Labor and Human
Resources, US Congress, S. Hrg. 10-321
- R.M. Cook-Deegan. "Economic Implications of Gene Therapy and Gene Mapping." (December, 1986). Paper for the Office of Economic Cooperation
and Development, Paris
- R.M. Cook-Deegan. "Federal Support for Research on Dementia." Government Printing Office. (July 22, 1986): 95-125. Statement and replies to questions in a
hearing before the Subcommittee on Aging,
Senate Committee on Labor and Human
Resources, US Congress. S Hrg 99-913
- R.M. Cook-Deegan. "Care of the Patient with Dementia." (January 16-17, 1986). Paper presented to the California Task Force
on Alzheimer's Disease, University of
California at San Francisco
- R.M. Cook-Deegan, Juengst E, Wexler N, Baskin Y, Herskowitz L, Perlman D, Risser J. "Gene Therapy: Ethics and Policy." Human Gene Therapy, transcript of the Media Outreach Program Roundtable, Stanford University New York: Scientists' Institute for Public Information. (February 13, 1986).
- Cook-Deegan, R. "The medical profession and the prevention of torture." New England Journal of Medicine 314.9 (1986): 587-.
- R.M. Cook-Deegan and T Schwab Myers. "Office of Technology Assessment: Dying with Dignity: Difficult Times, Difficult Choices." Government Printing Office. (October, 1985): 14-17. Report of the Select Committee on Aging, US
House of Representatives. Committee
Publication Number 99-518
- R.M. Cook-Deegan (Senior Analyst). "Office of Technology Assessment, US Congress: Long-Term Social Consequences of Artificial Intelligence." Workshop transcript (July, 1985).
- R.M. Cook-Deegan (Senior analyst, with primary responsibility for sections on biomedical research, chronic disorders, and medications). "Technology and Aging in America." (June, 1985). Report available at
http://www.wws.princeton.edu/~ota/
- R.M. Cook-Deegan. "Alzheimer disease and other disorders causing dementia." Government Printing Office. (1985): 71-98. 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
- R.M. Cook-Deegan (Study director and principal author). "Human Gene Therapy." (December, 1984). Report available at
http://www.wws.princeton.edu/~ota/
- Sisk JE, Cook-Deegan R, Dougherty D, Gelband H, Miike LH, Halpern S. "The use of immunosuppressive drugs in kidney transplantation." (March, 1984). Staff memorandum, Office of Technology
Assessment, US Congress
- R.M. Cook-Deegan (Study director and principal author). "Impacts of Neuroscience." (March, 1984). Reports available at
http://www.wws.princeton.edu/~ota/
- R.M. Cook-Deegan (Special Contributor. Author and coauthor of a few short chapter sections and background papers). "Commercial Biotechnology: An International Analysis." (January, 1984). Reprinted by the North Carolina
Biotechnology Center, Durham, NC, and
Pergamon Press, Elmwood, NY. Main staff
writers: Nanette Newell, Susan Clymer,
Geoffrey Karny, Thomas Bugbee, James A.
Thomas, Louise Williams, and Raymond
Zlinskas. Report available at
http:www.wws.princeton.edu/~ota/