ELSI Publications and Products Database
Since its creation in 1990, the Ethical, Legal and Social Implications (ELSI) Research Program has funded hundreds of research projects, conferences, and other activities-through grants and contracts. This has resulted in many peer reviewed journal articles, books, newsletters, websites, television and radio programs and educational materials. Many of these products are included in this database (updates are still in progress). However, there are likely to be a number of publications missing, particularly those affiliated with older grants.
Cook-Deegan R, Chandrasekharan S . Patents and genome-wide DNA sequence analysis: is it safe to go into the human genome?. J Law Med Ethics, 42 (S1):42-50. 2014. [SAGE] | Journal Article |
Pressman, L., Burgess, R., Cook-Deegan, R., McCormack, S.J., Nami-Wolk, I., Soucy, M. and Walters, L. "The Licensing of DNA Patents by US Academic Institutions: An Empirical Survey." Nature Biotechnology 24(1):31-9. [Full Text] |
Journal Article |
Rai, A. & Boyle, J. Synthetic biology: caught between property rights, the public domain, and the commons. PLoS Biol. 5, e58 (2007). [PubMed Central] |
Journal Article |
Kepler, T. B., Crossman, C. & Cook-Deegan, R. Metastasizing patent claims on BRCA1. Genomics 95, 312–4 (2010). [PubMed Central] |
Journal Article |
Maurer S.M., Rai A., Sali A. "Finding cures for tropical diseases: Is open source an answer?" PloS Med 2004; 1(3): e56. [PubMed] |
Journal Article |
Pohlhaus, J. R. & Cook-Deegan, R. M. Genomics research: world survey of public funding. BMC Genomics 9, 472 (2008). [PubMed Central] |
Journal Article |
Kepler, T. B. et al. Open Source Research — the Power of Us. Aust. J. Chem. 59, 291–294 (2006). [CSIRO Publishing] |
Journal Article |
So A.D., Rai A.K., Cook-Deegan, R.M. "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. (Under review) [Full Text] |
Journal Article |
Taylor, D. H., Cook-Deegan, R. M., Hiraki, S., Roberts, J. S., Blazer, D. G., & Green, R. C. (2010). Genetic testing for Alzheimer’s and long-term care insurance. Health Affairs (Project Hope), 29(1), 102–8. doi:10.1377/hlthaff.2009.0525 [PubMed] |
Journal Article |
Ginsburg, G. S. (2008). "Genomic Medicine: 'grand challenges' in the translation of genomics to human health." European journal of human genetics : EJHG 16(8): 873-874. [PubMed] [PubMed Central] |
Journal Article |
Benjamin, S. & Rai, A. K. Who’s Afraid of the APA? What the Patent System Can Learn From Administrative Law. Georgetown Law J. 95, 270 – 336 (2006). [Duke Law] |
Journal Article |
Evans JP . Putting patients before patents. Genet Med, 12 (4):204-5. 2010. [PubMed] | Journal Article |
Agrist M. (2010) Only connect: personal genomics and the future of American medicine. Mol Diagn Ther, 14(2):67-72. [PubMed Central] |
Journal Article |
Padmanabhan, S., Amin, T., Sampat, B., Cook-Deegan, R. & Chandrasekharan, S. Intellectual property, technology transfer and manufacture of low-cost HPV vaccines in India. Nat. Biotechnol. 28, 671–8 (2010). [PubMed Central] |
Journal Article |
Angrist M. (2011) You never call, you never write: why return of 'omic' results to research participants is both a good idea and a moral imperative. Per Med, 8(6):651-7 [PubMed Central] |
Journal Article |
Rai AK . Open and Collaborative Research: A New Model for Biomedicine. In Hahn RW Intellectual Property Rights in Frontier Industries. Washington DC: AEI Press. 131-158. 2005. | Book Chapter |
Angrist M. (2009) Eyes wide open: the personal genome project, citizen science and veracity in informed consent. Per Med, 6(6): 691-9. [PubMed Central] |
Journal Article |
Rai A . “Open and Collaborative” Biomedical Research: Theory and Evidence. In Kahin B, Foray D Advancing Knowledge and The Knowledge Economy. Cambridge, MA: MIT Press. 503. 2006. | Book Chapter |
Angrist M, Chandrasekharan S, Heaney C, et. al. (2010) Impact of gene patents and licensing practices on access to genetic testing for long QT syndrome. Genetics in Medicine, 12(4 Suppl): S111-54 [PubMed Central] |
Journal Article |
Rai, A. K. Building a better innovation system: combining facially neutral patent standards with therapeutics regulation. Houst. Law Rev. 45, 1037–1057 (2008). [PubMed Central] |
Journal Article |
Beskow LM, Dame L, Costello EJ . Research ethics. Certificates of confidentiality and compelled disclosure of data. Science, 322 (5904):1054-5. 2008. [PubMed Central] | Journal Article |
Reichman, J. H. Comment: compulsory licensing of patented pharmaceutical inventions: evaluating the options. J. Law, Med. Ethics 37, 247–63 (2009). [PubMed Central] |
Journal Article |
Boyle J . The public domain: Enclosing the commons of the mind. New Haven, CT: Yale University Press 333p. 2008. | Book |
Reichman, J. H. Richard Lillich Memorial Lecture: Nurturing a Transnational System of Innovation j. J. Transnatl. Law Policy 16, 143–166 (2007). [Duke Law Scholarship] |
Journal Article |
Chandrasekharan S, Cook-Deegan R . Gene patents and personalized medicine - what lies ahead?. Genome Med, 1 (92):x.2-4. 2009. [PubMed Central] | Journal Article |
So, A. D. et al. Is Bayh-Dole good for developing countries? Lessons from the US experience. PLoS Biol. 6, e262 (2008). [PubMed] |
Journal Article |
Chandrasekharan S, Fiffer M . Impact of gene patents and licensing practices on access to genetic testing for hearing loss. Genet Med, 12 (4 Suppl):S171-93. 2010. [PubMed] | Journal Article |
Skeehan, K., Heaney, C. & Cook-Deegan, R. Impact of gene patents and licensing practices on access to genetic testing for Alzheimer disease. Genet. Med. 12, S71–82 (2010). [PubMed] |
Journal Article |
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. Genet Med, 12 (4 Suppl):S194-211. 2010. [PubMed] | Journal Article |
Cook-Deegan, R. and McGeary, M.: In Stevens, R.A., Rosenberg, C.E., and Burns, L.R. (eds.) The Jewel in the Federal Crown? History, Politics, and the National Institutes of Health. Forthcoming in History and Health Policy in the United States: Putting the Past Back In. Rutgers University Press. 2006. |
Book Chapter |
Chandrasekharan S, Kumar S, Valley CM, Rai A . Proprietary science, open science and the role of patent disclosure: the case of zinc-finger proteins. Nat Biotechnol, 27 (2):140-4. 2009. [PubMed] | Journal Article |
Feldman MP, A Colaianni and C Liu. 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, RT Mahoney, L Nelsen, et al.). MIHR: Oxford, U.K., and PIPRA: Davis, U.S.A. 2007. |
Book Chapter |
Charney E, English W . Candidate genes and political behavior. Am Polit Sci Rev, 106 (1):1-34. 2012. | Journal Article |
Reichman JH. The International Legal Status of Undisclosed Clinical Trial Data: From Private to Public Goods? In Negotiating Health: Intellectual Property and Access to Medicines. Pedro Roffe, Geof Tansey and David Vivas-Eugui, Eds. Earthscan, pp. 133-150. 2006. |
Book Chapter |
Cook-Deegan R . The science commons in health research: structure, function, and value. J Technol Transf, 32 (3):133-56. 2006. | Journal Article |
Angrist M., Cook-Deegan R.M. "Who Owns the Genome?" The New Atlantis. Winter 2006: 87-96. [PubMed] |
Journal Article |
Cook-Deegan R . Public health. Boosting health services research. Science, 333 (6048):1384-5. 2011. [PubMed] | Journal Article |
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. 2006. |
Journal Article |
Cook-Deegan R, Chandrasekharan S, Angrist M . The dangers of diagnostic monopolies. Nature, 458 (7237):405-6. 2009. [PubMed] | Journal Article |
Crossman CR. Arming our Enemies: how parallel imports could increase Anti-microbial resistance. North Carolina Journal of International Law & Commercial Regulation, 31(4):823-845. 2006. |
Journal Article |
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.. Genet Med, 12 (4 Suppl):S15-38. 2010. [PubMed] | Journal Article |
Kumar S, Rai A. Synthetic Biology: The Intellectual Property Puzzle. Texas Law Review, 85:1745-1768. 2007. |
Journal Article |
Cook-Deegan R, Heaney C . Gene patents and licensing: case studies prepared for the Secretary's Advisory Committee on Genetics, Health, and Society. Genet Med, 12 (4 Suppl):S1-2. 2010. [PubMed] | Journal Article |
Rai A. Open and Collaborative? Biomedical Research: Theory and Evidence. In Brian Kahin and Dominique Foray, eds, Advancing Knowledge and the Knowledge Economy. MIT Press. 2006. |
Book Chapter |
Cook-Deegan R, Heaney C . Patents in genomics and human genetics. Annu Rev Genomics Hum Genet, 11 383-425. 2010. [PubMed] | Journal Article |
Rai, Reichman, Uhlir, and Crossman. Pathways Across the Valley of Death: Novel Intellectual Property Strategies for Accelerated Drug Discovery. Yale Journal of Health Law, Policy, and Ethics, Vol. 8, No. 1. 2008. [PubMed] |
Journal Article |
Caulfield T, Cook-Deegan RM, Kieff FS, Walsh J. Evidence and anecdotes: an analysis of human gene patenting controversies. Nature Biotechnology. 24(9):1091-4. 2006. [PubMed] |
Journal Article |
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. Genet Med, 12 (4 Suppl):S5-S14. 2010. [PubMed] | Journal Article |
Reichman JH and T Lewis. 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. Edited by KE Maskus & JH Reichman. Cambridge University Press. Pp. 337-366. 2005. |
Book Chapter |
Wald P. Blood and Stories: How Genomics is Changing Race, Medicine, and Human History. |
Journal Article |
Colaianni A, Cook-Deegan R . Columbia University's Axel patents: technology transfer and implications for the Bayh-Dole Act. Milbank Q, 87 (3):683-715. 2009. [PubMed] | Journal Article |
Reichman JH, Dinwoodie GB, Samuelson P. A Reverse Notice and Takedown Regime to Enable Public Interest Uses of Technically Protected Copyrighted Works. Berkeley Journal of Technology, 22(1): 1-66. 2007. [Full Text] |
Journal Article |
Abbott FM, and Reichman JH. 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. |
Journal Article |
Carbone J, Gold ER, Sampat B, Chandrasekharan S, Knowles L, Angrist M, Cook-Deegan R . DNA patents and diagnostics: not a pretty picture. Nat Biotechnol, 28 (8):784-91. 2010. [PubMed Central] | Journal Article |
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; REVEAL Study Group . Disclosure of APOE genotype for risk of Alzheimer's disease. N Engl J Med, 361 (3):245-54. 2009. [PubMed] | Journal Article |
Chandrasekharan, S., McGuire, A. L. & Van den Veyver, I. B. Do recent US Supreme Court rulings on patenting of genes and genetic diagnostics affect the practice of genetic screening and diagnosis in prenatal and reproductive care? Prenat. Diagn. 34, 921–6 (2014). [PubMed] |
Journal Article |
Charney E, English W . APSA 2012 Annual Meeting Paper. 34p. 2012. | Book |
Heaney, C. et al. The Perils of Taking Property Too Far. Stanford J. Law, Sci. Policy 1, 46–64 (2009). [PubMed Central] |
Journal Article |
Reichman JH and Uhlir P. Trends Affecting Access to Scientific Data from Government Funded Research. In The Global Flow of Information. Jack Balkin and Eddan Katz, eds., NYU Press, 2007. |
Book Chapter |
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 Aff (Millwood), 24 (2):483-90. 2005. [PubMed Central] | Journal Article |
Mathews, D. J. H., Cook-Deegan, R. & Bubela, T. Patents and misplaced angst: lessons for translational stem cell research from genomics. Cell Stem Cell 12, 508–12 (2013). [PubMed Central] |
Journal Article |
Lewis T, Reichman JH, and So A. The Case for Government Oversight and Government Funding of Clinical Trials. Economist's Voice Berkeley E-Press, Vol. 4, No. 1. 2007. [FSU Law School] |
Journal Article |
Rusert, B. M. & Royal, C. D. M. Grassroots marketing in a global era: more lessons from BiDil. J. Law, Med. Ethics 39, 79–90 (2011). [PubMed Central] |
Journal Article |
Cook-Deegan R, McGuire AL. . Moving beyond Bermuda: sharing data to build a medical information commons.. Genome Res, 27 (6):897-901. 2017. [PubMed] | Journal Article |
Lewis T, Reichman JH, and So A. The Case for Government Oversight and Government Funding of Clinical Trials. Economist's Voice. Berkeley E-Press, Vol. 4, No. 1. 2007. |
Journal Article |
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. Genet. Med. 12, S83–S110 (2010). |
Book Chapter |
Magnus, D., Cho, M. K. & Cook-Deegan, R. Direct-to-consumer genetic tests: beyond medical regulation? Genome Med. 1, 3 (2009). [PubMed Central] |
Journal Article |
Reichman JH and Dreyfuss RC. Harmonization without Consensus: Critical Reflections on Drafting a Substantive Patent Law Treaty. 57 Duke Law Journal 85. 2007. [Full Text] |
Journal Article |
Reichman, J. H. Rethinking the Role of Clinical Trial Data in International Intellectual Property Law: The Case for a Public Goods Approach. Marquette Intellect. Prop. Law Rev. 13, 1–68 (2009). [PubMed Central] |
Journal Article |
Kumar, S. The Other Patent Agency: Congressional Regulation of the ITC. Fla. Law Rev. 61, 529–580 (2009). [PubMed Central] |
Journal Article |
Bussey-Jones J, Garrett J, Henderson G, Moloney M, Blumenthal C, Corbie-Smith G . The role of race and trust in tissue/blood donation for genetic research. Genet Med, 12 (2):116-21. 2010. [PubMed] | Journal Article |
Bussey-Jones, J., et al. (2009). "Asking the right questions: views on genetic variation research among black and white research participants." J Gen Intern Med 24(3): 299-304. [PubMed] [PubMed] |
Journal Article |
Corbie-Smith G, Blumenthal C, Henderson GE, Garrett J, Bussey-Jones J, Moloney ME, Sandler RS, Williams Lloyd S, Dorrance J, Darter J . Studying genetic research participants: lessons from the "Learning About Research in North Carolina" study. Cancer Epidemiol Biomarkers Prev, 17 (8):2019-24. 2008. [PubMed] | Journal Article |
Sterling, R., Henderson, G. E. & Corbie-Smith, G. Public willingness to participate in and public opinions about genetic variation research: a review of the literature. Am. J. Public Health 96, 1971–8 (2006). [PubMed] |
Journal Article |
Cowan, R. "Genetic Technology and Reproductive Choice: An Ethics for Autonomy." In: The Code of Codes: Scientific and Social Issues in the Human Genome Project, eds. D.J. Kevles and L. Hood. Cambridge, MA; Harvard University Press, 1992. 244-264. |
Book Chapter |
Cowan, R. "Aspects of the History of Prenatal Diagnosis." In: "Reproductive Genetic Testing: Impact upon Women." Fetal Diagnosis and Therapy, eds. Evans, Rothenberg and Thomson. 1993; 8(supplement): 10-17. [PubMed] |
Journal Article |
Rivera SM, Goldenberg A, Rosenthal B, Aungst H, Maschke KJ, Rothwell E, Anderson RA, Botkin J, Joffe S. . Investigator Experiences and Attitudes About Research With Biospecimens.. J Empir Res Hum Res Ethics, 10 (5):449-56. 2015. [SAGE] | Journal Article |
Bryan Cwik . Moving Beyond 'Therapy' and 'Enhancement' in the Ethics of Gene Editing. Camb Q Healthc Ethics<br /> , 28 (4):695-707. 2019. [PubMed] | Journal Article |
Cwik, Bryan . Intergenerational monitoring in clinical trials of germline gene editing. Journal of Medical Ethics, 2019. [PubMed] | Journal Article |
Fang CY, Miller SM, Mills M, Mangan CE, Belch R, Campbell DE, Douglas SD . The effects of avoidance on cytotoxic/suppressor T cells in women with cervical lesions.. Psychooncology, 12 (6):590-8. 2003. [PubMed] | Journal Article |
Shoda, Y. et al. Psychological Interventions and Genetic Testing: Facilitating Informed Decisions About BRCA1/2 Cancer Susceptibility. J. Clin. Psychol. Med. Settings 5, 3–17 (1998). [ResearchGate] |
Journal Article |
Fang CY, Miller SM, Daly MB, Hurley K . The Influence of Attentional Style and Risk Perceptions on Intentions to Undergo Prophylactic Oophorectomy Among First-Degree Relatives. Psychol Health, 17 (3):365-76. 2002. [Full Text] | Journal Article |
Daly, M., J. Farmer, C. Harrop-Stein et al. "Exploring Family Relationships in Cancer Risk Counseling Using the Genogram." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 393-398. [Pubmed] [Pubmed] |
Journal Article |
Miller, S. M., Fang, C. Y., Manne, S. L., Engstrom, P. F. & Daly, M. B. Decision making about prophylactic oophorectomy among at-risk women: psychological influences and implications. Gynecol. Oncol. 75, 406–12 (1999). [Science Direct] |
Journal Article |
John J. Davis "Ethical Concerns of American Evangelicals Relative to Genetic Interventions." Ethics and Medicine (Accepted for publication). [PubMed] |
Journal Article |
Tomlinson, T. et al. Moral concerns and the willingness to donate to a research biobank. JAMA 313, 417–9 (2015). [PubMed] |
Journal Article |
De Vries RG, Tomlinson T, Kim HM, Krenz CD, Ryan KA, Lehpamer N, Kim SY . The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate.. Life Sci Soc Policy, 12 3. 2016. [Springer] | Journal Article |
Eng CM, Desnick RJ . Experiences in molecular-based prenatal screening for Ashkenazi Jewish genetic diseases. Adv Genet, 44 275-96. 2001. [PubMed] | Journal Article |
Eng, C.M., C. Schechter, Robinowitz et al. "Prenatal Genetic Carrier Testing Using Triple Disease Screening." JAMA. October 1997; 278(15): 1268-1272. |
Journal Article |
Dresser R. "Designing Babies: Human Research Issues," IRB: Ethics & Human Research. 2004; 26:1-8. [PubMed] |
Journal Article |
Dresser R. "Genetic Modification of Preimplantation Embryos: Toward Adequate Human Research Policies." Milbank Quarterly. 2004; 82:195-214. [PubMed] |
Journal Article |
Duster, T., "Depistage Genetique et Resurgence de L'Eugenisme," Rev Quad, Spring 1994, 167-82. [Full Text] |
Journal Article |
Duster, T. "The Hidden History of Scientific Racism," Crossroads February 1995; 48: 14-19. |
Journal Article |
Yamashita, R.C. "Bringing Disease Back In: Provisional Models and Implications for Future Research," Sociol Health Care 1997; 14. |
Book Chapter |
Duster, T. "Persistence and Continuity in Human Genetics and Social Stratification," pp. 218-38 in Genetics: Issues of Social Justice, Ted Peters, Ed. Cleveland; Pilgrim Press, 1998. |
Book Chapter |
Ragins, A. I. Why self-care fails: Implementing policy at a low-income sickle cell clinic. Qual. Sociol. 18, 331–356 (1995). [SpringerLink] |
Journal Article |
Beeson, D. and T. Doksum, "Family Values and Resistance to Genetic Testing," Chapter 9 in Bioethics in Context, Barry Hoffmaster, Ed. Cambridge University Press, 1999. |
Book Chapter |
Duster, T. "Human Genetics, Evolutionary Theory, and Social Stratification." In: The Genetic Frontier: Ethics, Law and Policy, eds. M.S. Frankel and A. Teich. Washington, DC: AAAS; 1993, 209-247. |
Book Chapter |
Duster, T. "The Prism of Heritability and the Sociology of Knowledge," pp. 119-30 in Naked Science: Anthropological Inquiry into Boundaries, Power, and Knowledge, Laura Nader, Ed. New York; Routledge Press, 1996. |
Book Chapter |
Duster, T. "Molecular Halos and Behavioral Glows," pp. 215-22 in Plain Talk About the Human Genome Project, Edward Smith and Walter Sapp, Eds. Tuskegee, Alabama; Tuskegee University, 1997. |
Book Chapter |
Last updated: January 24, 2019