Key Publications
Angrist M. Personal genomics: access denied? Technology Review (non-peer reviewed). Sept./Oct., 2008. Available (with free registration) here.
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. Peer-reviewed case study commissioned by the Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS). Released for public comment March 3, 2009. Available here (Project 1)
Angrist M., Cook-Deegan R. Who owns the genome? The New Atlantis. 11: 87-96. Winter 2006. Available here (Project 1)
Benjamin S. M., Rai, A. Who’s afraid of the APA: what the patent system can learn from administrative law. Georgetown Law Journal. 95: 296 – 336. 2007. Available here (Project 2)
Benjamin S., Rai A. Fixing innovation policy: a structural perspective. George Washington Law Review 77(1):1-88. November 2008 (accepted March 2008). Available here (Project 2)
Beskow L.M., Dame L., Costello E.J. Certificates of confidentiality and compelled disclosure of data. Science. 322(5904):1054–1055. Nov. 14, 2008. NIH MS ID 109393. Available (with subscription) here (Core 2)
Boyle J. The Public Domain: Enclosing the Commons of the Mind. New Haven, CT: Yale University Press, 2008. Available here (Project 2)
Boyle J. Mertonianism unbound? Imagining free, decentralized access to most cultural and scientific material. In Understanding Knowledge as a Commons: From Theory to Practice, eds. Elinor Ostrom, Charlotte Hess. Cambridge, MA: MIT Press, 2007. 123 – 144. (Project 2)
Caulfield T., Cook-Deegan R.M., Kieff F.S., Walsh, J. Evidence and anecdotes: analysis of human gene patenting controversies. Nature Biotechnology 24: 1091-4. Sept., 2006. PMID: 16964215. Available (with subscription) here (Project 1)
Chandrasekharan S., Fiffer M. Impact of gene patents and licensing practices on access to genetic testing for hearing loss. Peer-reviewed case study commissioned by the Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS). Released for public comment March 3, 2009. Available here (Project 1)
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. Peer-reviewed case study commissioned by the Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS). Released for public comment March 3, 2009. Available here (Project 1)
Chandrasekharan S., Kumar S., Valley C.M. , Rai A. Proprietary science, open science and the role of patent disclosure: the case of zinc-finger proteins. Nature Biotechnology. 27(2): 140 – 144. Feb. 2009. NIH MS ID 102808. Available (with subscription) here (Project 2)
Chandrasekharan S., Perin N.C., Wiechers I.R., and Cook-Deegan R. Public-private interactions in genomic medicine: research and development. In Genomic and Personalized Medicine, eds. Huntington F. Willard, Geoffrey S. Ginsburg. NY: Elsevier, Oct. 2008. 434-444. Book description available here (Project 1)
Chandrasekharan S., Pitlick E., Heaney C., 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). Released for public comment March 3, 2009. Available here (Project 1)
Cohen W. M., Walsh J.P. Real impediments to academic biomedical research. Innovation Policy and the Economy. 8(1):1 - 30. April, 2008 (accepted before April 7, 2008).
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. Peer-reviewed case study commissioned by the Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS). Released for public comment March 3, 2009. Available here (Project 1)
Cook-Deegan R. Gene patents. In From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book, ed. Mary Crowley. Garrison, NY: The Hastings Center, 2008. 69 – 72. Available here (Project 1)
Cook-Deegan R. The science commons in health research: structure function and value. Journal of Technology Transfer. 32:133-156. 2007. Available (with subscription) here and here (Project 1)
Cook-Deegan R., Chandrasekharan S., Angrist M. The dangers of diagnostic monopolies. Nature. 458(7237):405-406. March 26, 2009. NIH MS ID 105466. Available here (Project 1)
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 (UNESCO) 58(188): 299-318. June, 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. 188:317 – 338. 2006. Manuscript available here
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 to colon cancers. Peer-reviewed case study commissioned by the Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS). Released for public comment March 3, 2009. Available here (Project 1)
Cook-Deegan R., Rai A.K. DNA sequence patents are not in the grave yet. Letter to the editor. Nature Biotechnology. 27(2): 122. Feb., 2009. Available (with subscription) here
Eisenberg R., Rai A. Harnessing and sharing the benefits of state-sponsored research: intellectual property rights and data sharing in California's stem cell initiative. Berkeley Technology Law Journal. 21(3): 1187 – 1213. 2006. Available here and here (Project 2)
Feldman M., Colaianni A., Liu K. Lessons from the commercialization of the Cohen-Boyer patents: the Stanford University licensing program. In Intellectual Property Management in Health and Agricultural Innovation: A Handbook of Best Practices, eds. A. Krattiger, R.T. Mahoney, L. Nelsen, et al. PIPRA: Davis, U.S.A., 2007. 1797-1808. Available here (Project 1)
Fore J., Wiechers I.R., Cook-Deegan R. The effects of business practices, licensing, and intellectual property on development and dissemination of the polymerase chain reaction: case study. J Biomed Discov Collab. 1:7. 2006. PMCID: PMC1523369. Available here (Project 1)
Ginsburg G.S., Haga S.B. Translating genomic biomarkers into clinically useful diagnostics. Expert Review of Molecular Diagnostics. 6:179-91. 2006. PMID: 16512778 (Core 2)
Haga S.B. Teaching resources for genetics. Nat Rev Genet. 7:223-9. 2006. PMID: 16462854. Available (with subscription) here (Core 2)
Haga S., Beskow L.M. Ethical, legal, and social implications of biobanks for genetics research. In Genetic Dissection of Complex Traits, Second Edition, ed. DC Rao. San Diego, CA: Academic Press, 2008. 505 – 544. (Core 2)
Haga S.B., Beskow L. Ethical, legal, and social implications of biobanks for genetics research. Advances in Genetics. 60: 505-44. Published online March 18, 2008. PMID: 18358331. (Core 2)
Haga S.B., Burke W. Pharmacogenetic testing: not as simple as it seems. Genetics in Medicine. 10(6):391 – 395. June 2008 (accepted Feb. 4, 2008). PMID: 18496219. (Core 2)
Haga S.B., Ginsburg G.S. Prescribing BiDil: is it black and white? J Am Coll Cardiol. 48(1):12-4. 2006. PMID: 16814642 Available (with subscription) here (Core 2)
Haga S.B., Willard H.F. Defining the spectrum of genome policy. Nat Rev Genet. 7(12): 966-72. 2006. PMID: 17139328 Available (with subscription) here (Core 2)
Kepler T., Marti-Renom M., Maurer S., Rai A., Taylor G., Todd M. Open source research: the power of us. Australian Journal of Chemistry. 59: 291-294. 2006. Available here (Project 2)
Kumar S., Rai A. Synthetic biology: the intellectual property puzzle. Texas Law Review. 85:1745 – 1768. 2007. Available here (Project 2)
Lenoir T., Giannella E. The emergence and diffusion of DNA microarray technology. J Biomed Discov Collab. 1:11. 2006. PMCID: PMC1590052. Available here (Project 1)
Mitchell R. Sacrifice, individuation, and the economies of genomics. Literature and Medicine. 26(1): 126-158. Spring 2007. Available (with subscription) here (Project 1)
Mitchell R., Burgess H., Thurtle P. Biofutures: Owning Body Parts and Information (DVD-ROM). University of Pennsylvania Press, April 2008. Description available here (Project 1)
Pohlhaus J.R., Cook-Deegan R.M. Genomics research: world survey of public funding. BMC Genomics. 9:472. Oct. 10, 2008. PMCID: PMC2576262 Available here (Project 1)
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. Peer-reviewed case study commissioned by the Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS). Released for public comment March 3, 2009. Available here (Project 1)
Pressman L., Burgess R., Cook-Deegan R., McCormack S.J., Nami-Wolk I., Soucy M., Walters L. The licensing of DNA patents by US academic institutions: an empirical survey. Nature Biotechnology. 24(1): 31 – 39. January 2006. PMID: 16404390. Available (with subscription) here (Core 3)
Rai A. Open and collaborative research: a new model for biomedicine. In Intellectual Property Rights in Frontier Industries: Software and Biotechnology, ed. Robert Hahn. Washington, DC: AEI-Brookings Press, 2005. 131 – 158. Available here (Project 2)
Rai A. 'Open and collaborative' biomedical research: theory and evidence. In Advancing Knowledge and the Knowledge Economy, eds. Brian Kahin, Dominique Foray. Cambridge, MA: MIT Press, 2006. 391 – 414. Book description available here (Project 2)
Rai A. Building a better innovation system: combining facially neutral patent standards with regulations of end product therapeutics. Houston Law Review. 45:1037 – 1057. 2008. Available here (Project 2)
Rai A., Allison J., Sampat B., Crossman C. University software ownership: technology transfer or business as usual? Duke Law School Legal Studies Paper No. 160. July 2007. Available here (Project 2)
Rai A., Boyle J. Synthetic biology: caught between property rights, the public domain, and the commons. PLoS Biology 5(3): e58. 2007. PMCID: PMC1821064. Available here (Project 2)
Reichman J. H., Uhlir P.F., Ritch H. J. Access to scientific and technological knowledge: UNESCO’s past, present and future roles. In Standard Setting in UNESCO, vol. 1, Normative Action in Education, Science and Culture, ed. A.A. Yusuf. Paris: UNESCO, 2007. Leiden, Netherlands: Martinus Nijhoff, 2007. (English & French.) 323-350. Catalog information available here (Project 3)
Skeehan K., Heaney C., 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 (SACGHS). Released for public comment March 3, 2009. Available here (Project 1)
Staples J., Cook-Deegan R., Ginsburg G.S. The role of the academic medical center in advancing personalized health care. In Personalized Health Care: Pioneers, Partnerships, Progress. Report prepared by the Initiative on Personalized Health Care, Department of Health and Human Services. Nov. 2008. Available here (Project 1)
So A., Rai A., 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 April 4, 2005 to the World Health Organization. Abstract available here (Project 2)
So A., Sampat B., Rai A., Cook-Deegan R., Reichman J., Weissman R., Kapczynski A. Is Bayh-Dole good for developing countries? Lessons from the US experience. PLoS Biology 6(10):e262. Oct. 28, 2008. PMCID: PMC2573936 Available here (Project 2)
Tofano D., Wiechers I.R., 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. 2(2): 50-61. 2006. Available here (Project 1)
Wald P. Genomics: the spaces and races of citizenship in the genome age. In America -- From Near and Far: Varieties of American Experience, eds. Marc Lee Raphael, Cornelia Wilhelm. Williamsburg, VA: Department of Religious Studies, College of William and Mary. 2007. (Project 1)
Wald P. Blood and stories: how genomics is rewriting race, medicine and human history. Patterns of Prejudice: Race and Contemporary Medicine (special issue, ed. Sander Gilman). 40(4/5): 303 – 333. November 2006. Available (with subscription) here Republished as Blood and stories: how genomics is rewriting race, medicine and human history. In Race in Contemporary Medicine, ed. Sander L. Gilman. NY: Routledge, 2008. 1 – 31. (Project 1)
Wald P. Editor’s preface to genomics in literature, the visual arts, and culture. Literature and Medicine (special issue, eds. Priscilla Wald, Jay Clayton, Karla F. C. Holloway). 26(1): vi–xvi. Spring 2007. Available (with subscription) here (Project 1)
Wald P. What's in a cell?: John Moore's spleen and the language of bioslavery. New Literary History: Essays Probing the Boundaries of the Human in Science and Science Fiction (special issue). 36(2):205-25. Spring 2005. Available (with subscription) here (Project 1)
Waldby C., Mitchell R. Tissue Economies: Blood, Organs and Cell Lines in Late Capitalism. Durham: Duke University Press, 2006. Book description available here. (Project 1)
Walsh J.P., Cho C., Cohen W.M. View from the bench: patents, research and material transfers. Science. 309:2002-2003. 2005. PMID: 16179461 Available (with subscription) here (Project 1)
Walsh J.P., Cohen W. M., Cho C. Where excludability matters: material versus intellectual property in academic biomedical research. Research Policy. 36: 1184-1203. October 2007. Abstract available here (Project 1)
Additional Publications
Abbott F.M., Reichman J.H. The Doha Round’s public health legacy: strategies for the production and diffusion of patented medicines under the amended TRIPS provisions. Journal of International Economic Law. 10(4):921 – 987. 2007. Available (with subscription) here (Project 3)
Angrist M. High anxiety. Book Review of Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene, by Masha Gessen. Nature Genetics. 40(9):1038. Sept., 2008. NIH MS ID 102524. Available (with subscription) here (Project 1)
Beskow L.M. Considering the nature of individual research results. Invited commentary. American Journal of Bioethics. 6(6): 38-40. 2006. Available (with subscription) here (Core 2)
Beskow L.M., Burke W. Ethical issues in genetic epidemiology and population genetics. In Ethics and Epidemiology, Second Edition, eds. SS Coughlin, TL Beauchamp, DL Weed. NY: Oxford University Press, 2009. (Core 2)
Buchanan A. Human nature and enhancement. Bioethics. 23(3):141 – 150. March, 2009. NIH MS ID 107341. Available (with subscription) here (Core 1)
Cars O., Hogberg D., Murray M., Nordberg O., Sivaraman S., Lundborg C.S., So A.D., Tomson G. Meeting the challenge of antibiotic resistance. BMJ. 337:a1438. Sept. 18, 2008. PubMed Central Journal – In Process. Available here (Project 2)
Christensen K.D., Roberts J.S., Royal C.D., Fasaye G.A., Obisesan T., Cupples L.A., Whitehouse P.J., Butson M.B., Linnenbringer E.P., Relkin N.R., Farrer L.A., Cook-Deegan R.M., Green R.C. Incorporating ethnicity into genetic risk assessment for Alzheimer’s disease: the REVEAL study experience. Genetics in Medicine. 10: 207-214. March, 2008. PMCID: PMC2483343. (Project 1)
Cook-Deegan R. Dr. Varmus Goes to Washington. Book review of The Art and Politics of Science by Harold Varmus. American Scientist 97 (2; Mar-Apr): 152-153, 2009. Available here
Cook-Deegan R., Lohr K.N., Palmer J.H. How bioethics can inform policy decisions about genetic enhancement. In Altering Nature, v. 2 (Religion, Biotechnology and Public Policy), eds. B. Andrew Lustig, Baruch A. Brody, Gerald P. McKenny. Springer, 2008. 161-198. Book description available here (Project 1)
Cook-Deegan R., McGeary M. The jewel in the federal crown? History, politics, and the National Institutes of Health. In History and Health Policy in the United States: Putting the Past Back In, eds. Rosemary A. Stevens, Charles E. Rosenberg, Lawton R. Burns. New Brunswick, NJ: Rutgers University Press, 2006. 176 – 201. Book description available here (Project 1)
Crossman C.R. Arming our enemies: how parallel imports could increase anti-microbial resistance. North Carolina Journal of International Law & Commercial Regulation. 31(4): 823-845. 2006. Available here (Project 2)
Ginsburg G.S., Angrist M., Cook-Deegan R. Genomics and medicine at a crossroads in Chernobyl. Science. 314(5796): 62-3. 2006. PMID: 17023637 Available (with subscription) here (Project 1)
Ginsburg G.S., Burke T., Febbo P. Centralized biorepositories for academic medical centers and health systems. JAMA 299(11):1359-1361. March 19, 2008. Available (with subscription) here (Core 2)
Ginsburg GS. ‘Grand challenges’ in the translation of genomics to human health. European Journal of Human Genetics 16(8):873-874. Aug., 2008. NIHMS ID 104978. Available here (Core 2)
Haga S.B., Thummel K.E., Burke W. Adding pharmacogenetics information to drug labels: lessons learned. Pharmacogenetics and Genomics. 16(12):847-54. Dec. 2006. PMID: 17108808 (Core 2)
Haga S.B., Warner L.R., O'Daniel J. The potential of a placebo/nocebo effect in pharmacogenetics. Public Health Genomics. 12(3):158-62. 2009. NIH MS ID: 108883. (Core 2)
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):e190. Sept. 23, 2008. PMCID: PMC2553818. Available here (Project 1)
Lewis T., Reichman J.H., So A. The case for government oversight and government funding of clinical trials. Economists’ Voice (Berkeley E- Press). 4(1). January 2007. Available here (Project 3)
Magnus D., Cho M., and Cook-Deegan R. Genetic-test firms must follow law. Op-ed. San Jose Mercury-News. 11 July 2008. (Project 1)
Magnus D., Cho M.K., Cook-Deegan R. Direct-to-consumer genetic tests: beyond medical regulation? Genome Medicine. 1:17. Feb. 2, 2009. PMCID: PMC2664950. Available (with subscription) here (Project 1)
Maurer S., Rai A., Sali A. Finding cures for tropical diseases: is open source an answer? PLoS Medicine 1(3): e56. 2004. PMCID: PMC539047. Available here (Project 2)
Rai A., Reichman J., Uhlir P., Crossman C. Pathways across the valley of death: novel intellectual property strategies for accelerated drug discovery. Yale Journal of Health Law, Policy, and Ethics 8(1):53-89. Winter 2008. Available here (Projects 2 and 3)
Reichman J.H. Rethinking the role of clinical trial data in international intellectual property law: the case for a public goods approach. Marquette Intellectual Property Law Review. 13(1):1-68. Winter 2009.
Reichman J. H. Nurturing a transnational system of innovation. Richard Lillich Memorial Lecture. In J. Transnational L. & Pol. 16:143-166. 2007. Also published in: Intellectual Property, Public Policy and International Trade, eds. I. Govaere, Hanns Ullrich. College of Europe Studies, No. 6. NY: Peter Lang, 2007. 17-43. Available here (Project 3)
Reichman J.H. Preface to Ghidni G. Intellectual Property and Competition Law: The Innovation Nexus. Cheltenham, UK: Edward Elgar, 2006. vii-xi. (Project 3)
Reichman J.H. The international legal status of undisclosed clinical trial data: from private to public goods? In Negotiating Health: Intellectual Property and Access to Medicines, eds. Pedrp Roffe, et al. London Sterling, VA: Earthscan, 2006. 133-50. Available here (Project 3)
Reichman J.H., Dinwoodie G. B., Samuelson P. A reverse notice and takedown regime to enable public interest uses of technically protected copyrighted works. Berkeley Technology Law Journal. 22(3): 981 – 1060. Summer 2007. Available here (Project 3)
Reichman J. H., Dreyfuss R. C. Harmonization without consensus: critical reflections on drafting a substantive patent law treaty. Duke Law Journal 57:85-130. 2007. Reprinted in: Intellectual Property, Trade and Development: Strategies to Optimize Economic Development in a TRIPS-Plus Era, ed. D. Gervais. Oxford: Oxford University Press, 2007. 443-74. Available here (Project 3)
Reichman J.H., Lewis T. Using liability rules to stimulate local innovation in developing countries: application to traditional knowledge. In International Public Goods and Transfer of Technology Under a Globalized Intellectual Property Regime, eds. K.E. Maskus, J. H. Reichman. Cambridge, UK: Cambridge University Press, 2005. 337-336. Book description available here (Project 3)
Reichman J., Rai A.K., Newell R.G., Wiener J.B. Intellectual property and alternatives: strategies for green innovation. Draft of programme paper prepared for the Chatham House. Dec. 2008. Available here (Project 2).
Shanawani H., Dame L., Schwartz D.A., Cook-Deegan R. Non-reporting and inconsistent reporting of race and ethnicity in articles that claim associations among genotype, outcome, and race or ethnicity. J Med Ethics 32(12):724-8. 2006. PMID: 17145914 Available here (Core 2)
Shianna K.V., Willard H.F. Human genomics: in search of normality. News & Views. Nature 444(7118): 428-429. 2006. PMID: 17122840 Available (with subscription) here (Core 2)
So A., Manz C. Meeting the challenge of antimicrobial resistance: public good and collective action. In Global Health Watch 2. London: Zed Books Limited, 2008. 92-99. Available here (Project 1)
Stallings S., Witt W., Finkelstein S., Hiller A., Sinskey A., Ginsburg G.S. A framework to evaluate the economic impact of pharmacogenomics. Pharmacogenomics 7(6):853-862. 2006. PMID: 16981846. (Core 2)
Wald P. “Atomic Faulkner.” In Faulkner's Inheritance: Faulkner and Yoknapatawpha, eds. Joseph R. Urgo, Ann J. Abadie. Jackson: University Press of Mississippi, 2007. 35 – 52. Book description available here (Project 1)
Wald P. Cognitive estrangement, science fiction and medical ethics. The Lancet. 371(9628):1908 – 1909. June 7, 2008 (accepted April 1, 2008). PMID: 18543413 Available (with subscription) here (Project 1)
Wald P. Contagious: Cultures, Carriers, and the Outbreak Narrative. Durham, NC: Duke University Press, 2007. Book description available here (Project 1)
Willard H.F. Organization, variation and expression of the human genome as a foundation of genomic and personalized medicine. . In Genomic and Personalized Medicine, eds. Huntington F. Willard, Geoffrey S. Ginsburg. NY: Elsevier, October 2008. 4-21. Book description available here (Core 2)
Willard H.F., Ginsburg G., eds. Genomic and Personalized Medicine (2 vols). New York: Elsevier, 2008. Book description available here (Core 2)
Willard HF. Honest Jim talks manners. Book review of Avoid Boring People, by James D. Watson. Nature 449: 787. 2007. Available (with subscription) here (Core 2)
Zick C.D., Mathews C., Roberts J.S., Cook-Deegan R.M., Pokorski R.J. Genetic testing for Alzheimer’s disease and its impact on insurance purchasing behavior. Health Affairs 24: 483-490. 2005. PMCID: PMC1761120. Available (with subscription) here (Project 1)