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.
Burke, W., M.J.E. Kahn, J.E. Garber, and F.S. Collins. "'First Do No Harm' also applied to cancer susceptibility testing." Cancer J Sci Amer. 1996; 2:150-152. [PubMed] |
Journal Article |
Burke W . Genetic testing. New Engl J Med, 347 (23):1867-75. 2002. [PubMed] | Journal Article |
Pinsky, L.E. "How to Interpret Sensitivity and Specificity," (p.24) in L. Burkholder, M. Migeon and D. Paauw, eds. Internal Medicine Clerkship Guide. St. Louis: Mosby Yearbook, 1999. |
Book Chapter |
Burke W., Olsen A.H., Pinsky L.E., Reynolds S.E., Press N.A. "Misleading Presentation of Breast Cancer in Popular Magazines." Effective Clinical Practice. March/April 2001; 4(2): 58-64. [PubMed] |
Journal Article |
Fullerton SM, Anderson G et al. Meeting the governance challenges of next-generation biorepository research. Sci Transl Med, 2 (15):15cm3. 2010. [PubMed Central] | Journal Article |
James, R. D., Yu, J.-H., Henrikson, N. B., Bowen, D. J. & Fullerton, S. M. Strategies and stakeholders: minority recruitment in cancer genetics research. Community Genet. 11, 241–9 (2008). [PubMed] |
Journal Article |
Fullerton S, Lee S . Secondary uses and the governance of de-identified data: Lessons from the human genome diversity panel. BMC Med Ethics, 12 16. 2011. [PubMed Central] | Journal Article |
Jaja, C., Burke, W., Thummel, K., Edwards, K. & Veenstra, D. L. Cytochrome p450 enzyme polymorphism frequency in indigenous and native american populations: a systematic review. Community Genet. 11, 141–9 (2008). [PubMed] |
Journal Article |
Fullerton S, Yu J et al. Population description and its role in the interpretation of genetic association. Hum Genet, 127 (5):563-72. 2010. [PubMed Central] | Journal Article |
Walker L, Starks H, West KM, Fullerton SM . dbGaP data access requests: a call for greater transparency. Sci Transl Med, 3 (113):113cm34. 2011. [PubMed] | Journal Article |
Wilfond BS, Diekema DS . Engaging children in genomics research: decoding the meaning of assent in research. Genet Med, 14 (4):437-43. 2012. [PubMed] | Journal Article |
Veenstra, D. L., et al. (2010). "A formal risk-benefit framework for genomic tests: facilitating the appropriate translation of genomics into clinical practice." Genet Med 12(11): 686-693. [PubMed] [PubMed] |
Journal Article |
Wang, C., Gordon, E. S., Norkunas, T., Wawak, L., Liu, C. T., Winter, M., . . . Bowen, D. J. (2016). A randomized trial Examining The Impact Of Communicating Genetic And Lifestyle Risks For Obesity. Obesity (Silver Spring), 24(12), 2481-2490. doi:10.1002/oby.21661 [PubMed] |
Journal Article |
Burke, W. et al. The translational potential of research on the ethical, legal, and social implications of genomics. Genet. Med. 17, 12–20 (2015). [PubMed] |
Journal Article |
James, R. et al. Exploring pathways to trust: a tribal perspective on data sharing. Genet. Med. 16, 820–6 (2014). [PubMed] |
Journal Article |
Segrest, V., James, R., Madrid, T. & Fernandes, R. Launching native health leaders: students as community-campus ambassadors. Prog. Community Heal. Partnerships 4, 81–6 (2010). [PubMed Central] |
Journal Article |
Burke W., Pinsky L.E., Press N.A. "Categorizing Genetic Tests to Identify Their Ethical, Legal, and Social Implications." American Journal of Medical Genetics. Fall 2001; 106: 233-240. [PubMed] |
Journal Article |
Burke W, Culver J, Pinsky L, Hall S, Reynolds SE, Yasui Y, Press N . Genetic assessment of breast cancer risk in primary care practice. Am J Med Genet A, 149A (3):349-56. 2009. [PubMed] | Journal Article |
Davidson M., David K., Hsu N., Pollin T., Weiss J., Wilker N., Wilson M. "Consumer Perspectives on Genetic Testing: Lessons Learned." Genetics and Public Health in the 21st Century. Khoury M.J., Burke W., Thomson E.J., eds. Oxford University Press, New York, 579-602. |
Book |
Wilker, N.L., M.E. Davidson, C. Holmes et al. Report to NYLCare Health Plans Medical Affairs Department: Opportunities to Enhance NYLCare's Genetics Service Delivery System. June 1998. 26pp. |
Book |
Charlene Caburnay, Patricia Babb, Kimberly Kaphingst, Jessica Roberts, Suchitra Rath . Characteristics of genetics-related news content in Black weekly newspapers. Public Health Genomics, 17 (1):S7-15. 2014. [PubMed] | Journal Article |
Boyle P . Shaping priorities in genetic medicine. Hastings Cent Rep, 25 (3):52-8. 1995. [PubMed] | Journal Article |
Clayton EW . The dispersion of genetic technologies and the law. Hastings Cent Rep, 25 (3):S13-5. 1995. [PubMed] | Journal Article |
Tauer, C. A. (1995). Human growth hormone. A case study in treatment priorities. The Hastings Center Report, 25(3), S18–20. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/7649735 [PubMed] |
Journal Article |
Press, N. & Browner, C. H. Risk, autonomy, and responsibility. Informed consent for prenatal testing. Hastings Cent. Rep. 25, S9–12 (1995). [PubMed] |
Journal Article |
Nolan, K. Commentary: how do we think about the ethics of human germ-line genetic therapy? J. Med. Philos. 16, 613–9 (1991). [PubMed] |
Journal Article |
Boyle, P.J. et al. "Public Priorities for Genetic Services." Hastings Center Report. May-June 1995; 25(3, Special Supplement). [PubMed] |
Journal Article |
Wilfond, B.S. and K. Nolan. "National Policy Development for the Clinical Application of Genetic Diagnostic Technologies: Lessons from Cystic Fibrosis." JAMA. December 1993; 270(24): 2948-2954. [PubMed] |
Journal Article |
Wilfond BS . Screening policy for cystic fibrosis. The role of evidence. Hastings Cent Rep, 25 (3):S21-3. 1995. [PubMed] | Journal Article |
Silverman, P. H. Commerce and genetic diagnostics. Hastings Cent. Rep. 25, S15–8 (1995). [PubMed] |
Journal Article |
Boyle, P.J. et al. "Genetic Grammar: Health, Illness, and the Human Genome Project." Hastings Center Report. 1992; Special Supplement 22(4): S1. [PubMed] |
Journal Article |
DesRoches, C. M., et al. (2010). "Activities, productivity, and compensation of men and women in the life sciences." Acad Med 85(4): 631-639. [PubMed] [PubMed] |
Journal Article |
Zinner DE, Campbell EG . Life-science research within US academic medical centers. JAMA, 302 (9):969-76. 2009. [PubMed] | Journal Article |
Zinner DE, Bolcic-Jankovic D, Clarridge B, Blumenthal D, Campbell EG . Participation of academic scientists in relationships with industry. Health Aff (Millwood), 28 (6):1814-25. 2009. [PubMed] | Journal Article |
Arias JJ, Pham-Kanter G, Gonzalez R, Campbell EG. Trust, vulnerable populations, and genetic data sharing. J Law Biosci. 2015;2(3):747-753. Published 2015 Oct 29. doi:10.1093/jlb/lsv044 [PubMed Central] |
Journal Article |
Zinner DE, Pham-Kanter G, Campbell EG. The Changing Nature of Scientific Sharing and Withholding in Academic Life Sciences Research: Trends From National Surveys in 2000 and 2013. Acad Med. 2016;91(3):433-40. [PubMed Central] |
Journal Article |
Arias JJ, Pham-Kanter G, Campbell EG. The growth and gaps of genetic data sharing policies in the United States. J Law Biosci. 2014;2(1):56-68. Published 2014 Dec 20. doi:10.1093/jlb/lsu032 [PubMed Central] |
Journal Article |
Pham-Kanter G, Zinner DE, Campbell EG. Codifying collegiality: recent developments in data sharing policy in the life sciences. PLoS One. 2014;9(9):e108451. Published 2014 Sep 26. doi:10.1371/journal.pone.0108451 [PLoS One] |
Journal Article |
Caplan, A.L. "Neutrality is Not Morality: The Ethics of Genetic Counseling." In: Prescribing Our Future, eds. Bartels et al. Hawthorne, NY: Aldine de Gruyter, 1993. |
Book Chapter |
Bartels, D.M.; B.S. LeRoy; and A.L. Caplan, eds. Prescribing Our Future: Ethical Challenges in Genetic Counseling. Hawthorne, NY: Aldine de Gruyter, 1993. 186p. |
Book |
LeRoy BS . When Theory Meets Practice: Challenges to the Field Genetic Counseling. In Bartels DB, LeRoy BS, Caplan AS Prescribing Our Future: Ethical Challenges in Genetic Counseling. Hawthorne, NY: Aldine de Gruyter. 186. 1993. | Book Chapter |
Kim SC, Cappella JN, Price V. Online discussion effects on intention to participate in genetic research: A longitudinal experimental study. Psychol Health. 2016;31(9):1025-46. [PubMed Central] |
Journal Article |
Capron, A.M. "Human Genome Research in an Interdependent World." Kennedy Institute of Ethics Journal. September 1991; 1(3): 247-251. [PubMed] |
Journal Article |
Capron AM . Genetics and Insurance: Accessing and Using Private Information. Soc Philos Policy, 17 (2):235-75. 2000. | Journal Article |
Capron AM . At Law: Hedging Their Bets. Hastings Cent Rep, 23 (3):30-1. 1993. [Full Text] | Journal Article |
Capron, A.M. "Fashioning a Reasonable Interim Policy: Conclusions of the Insurance Project." p. 55-62, in Genetic Testing: Implications for Insurance. Chicago: Actuarial Foundation, 1998. |
Book Chapter |
Capron, A.M. "Hedging Their Bets." Hastings Center Report. May-June 1993; 23(3): 30-32. |
Journal Article |
The New York State Task Force on Life and the Law . Genetic Testing and Screening in the Age of Genomic Medicine. New York, NY: The New York State Task Force on Life and the Law 411. 2000. | Book |
Carroll A.M., Coleman C.H. "Closing the gaps in genetics legislation and policy: A report by the New York State Task Force on Life and the Law." Genetic Testing. December 2001; 5(4): 275-280. [PubMed] |
Journal Article |
Genetics, Religion and Ethics Project, The Institute of Religion and Baylor College of Medicine, the Texas Medical Center, Houston, Texas, June 1, 1992, "Summary Reflection Statement" Human Gene Therapy. October 1992; 3(5): 525-527. |
Journal Article |
J. Nelson . On the New Frontiers of Genetics and Religion. Grand Rapids, MI: Eerdmans Publishing Company 224. 1994. | Book |
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 |
Mozersky J, Ravitsky V, Rapp R, Michie M, Chandrasekharan S, Allyse M . Toward an Ethically Sensitive Implementation of Noninvasive Prenatal Screening in the Global Context.. Hastings Center Report, 47 (2):41-49. 2017. [PubMed] | Journal Article |
WGBH, "The Secret of Life" (Video series -- 8 one hour programs for PBS broadcast.) |
Video |
Suzuki D, Levine J . The Secret of Life: Redesigning the Living World. New York, NY: W. H. Freeman & Company 280. 1998. | Book |
Merz J.F., Leonard D.G.B., Kriss A.G., Cho M.K. "Industry opposes genomic legislation." Nature Biotechnology. 2002; 20(7): 657-657 (letter to the editor). [PubMed] |
Journal Article |
Caulfield, T., Gold, E.R. and Cho, M.K. "Patenting human genetic material: Refocusing the debate." Nature Reviews Genetics. 2000; 1: 227-231. [PubMed] |
Journal Article |
Henry, M. R., Cho, M. K., Weaver, M. A. & Merz, J. F. Genetics. DNA patenting and licensing. Science (80-. ). 297, 1279 (2002). [PubMed Central] |
Journal Article |
Henry, M. R., Cho, M. K., Weaver, M. A. & Merz, J. F. A pilot survey on the licensing of DNA inventions. J. Law, Med. Ethics 31, 442–9 (2003). [PubMed Central] |
Journal Article |
Merz, J. F., Kriss, A. G., Leonard, D. G. B. & Cho, M. K. Diagnostic testing fails the test. Nature 415, 577–9 (2002). [PubMed Central] |
Journal Article |
Merz, J. F., Magnus, D., Cho, M. K. & Caplan, A. L. Protecting subjects’ interests in genetics research. Am. J. Hum. Genet. 70, 965–71 (2002). [PubMed Central] |
Journal Article |
Merz, J. F. & Cho, M. K. What are gene patents and why are people worried about them? Community Genet. 8, 203–8 (2005). [PubMed Central] |
Journal Article |
Illes J, Blakemore C, Hansson M, Hensch T, Leshner A, Maestre G, Magistretti P, Quirion R, Strata P. International perspectives on engaging the public in neuroethics. Nature Reviews Neuroscience, 6(12):977-982. 2006 [PubMed Central] |
Journal Article |
McCormick, J. B., Owen-Smith, J. & Scott, C. T. Distribution of human embryonic stem cell lines: who, when, and where. Cell Stem Cell 4, 107–10 (2009). [PubMed] |
Journal Article |
McCormick, J. B., Boyce, A. M. & Cho, M. K. Biomedical scientists’ perceptions of ethical and social implications: is there a role for research ethics consultation? PLoS One 4, e4659 (2009). [PubMed Central] |
Journal Article |
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 |
Magnus, D. & Cho, M. K. A commentary on oocyte donation for stem cell research in South Korea. Am. J. Bioeth. AJOB 6, W23–4 (2006). [PubMed] |
Journal Article |
Lee, S. S.-J. et al. Genetics. The illusive gold standard in genetic ancestry testing. Science (80-. ). 325, 38–9 (2009). [PubMed] |
Journal Article |
Lee, S. S. Social networking in the age of personal genomics. Saint Louis Univ. J. Heal. Law Policy 3, 41–60 (2009). |
Journal Article |
Lee SS-J, Mountain J, Koenig, BA. The Meanings of Race in the New Genomics. GE Henderson, SE Estroff, LR Churchill, NMP King, J Oberlander, and RP Strauss (Eds), The Social Contributions to Health, Difference and Inequality: The Social Medicine Reader. 2nd Edition, Volume II. Duke University Press. 2005. |
Book Chapter |
Lee, S. S.-J. & Crawley, L. Response to open peer commentaries on “Research 2.0: social networking and direct-to-consumer personal genomics”. Am. J. Bioeth. AJOB 9, W1–3 (2009). [PubMed] |
Journal Article |
Greely HT. Neuroethics and ELSI: Similarities and Differences. 7 MINN. J. L. SCI. & TECH, 599-637. 2006 [Full Text] |
Journal Article |
Lee, S. S.-J. & Crawley, L. Research 2.0: social networking and direct-to-consumer (DTC) genomics. Am. J. Bioeth. AJOB 9, 35–44 (2009). [PubMed] |
Journal Article |
Greely HT. Stanford Symposium on Preimplantation Genetic Diagnosis: An Introduction - and Some Conclusions. 85 FERTILITY & STERILITY 1631-32. 2006. [Full Text] |
Journal Article |
Lee, S. S.-J. Racializing drug design: implications of pharmacogenomics for health disparities. Am. J. Public Health 95, 2133–8 (2005). [PubMed Central] |
Journal Article |
Magnus D. The Ethics of Preimplantation Genetic Diagnosis. Fertility Today, v.1, no.1, 2005. |
Journal Article |
McGuire, A. L., Cho, M. K., McGuire, S. E. & Caulfield, T. Medicine. The future of personal genomics. Science (80-. ). 317, 1687 (2007). [PubMed] |
Journal Article |
Cho MK, Tobin SL, Greely HT, McCormick J, Boyce A, Magnus D. Strangers at the Benchside: Research Ethics Consultation. American Journal of Bioethics, 2008. [PubMed] [PubMed] |
Journal Article |
McGuire, A. L., Caulfield, T. & Cho, M. K. Research ethics and the challenge of whole-genome sequencing. Nat. Rev. Genet. 9, 152–6 (2008). [PubMed Central] |
Journal Article |
Caulfield T, Scott C, Hyun I, Lovell-Badge R, Kato K, Zarzeczny A . Stem cell research policy and iPS cells. Nat Methods, 7 (1):28-33. 2010. [PubMed] | Journal Article |
Meslin, E. M. & Cho, M. K. Research ethics in the era of personalized medicine: updating science’s contract with society. Public Health Genomics 13, 378–84 (2010). [PubMed Central] |
Journal Article |
Fanos JH, Gronka S, Wuu J, Stanislaw C, Andersen PM, Benatar M . Impact of presymptomatic genetic testing for familial amyotrophic lateral sclerosis. Genet Med, 13 (4):342-8. 2011. [PubMed] | Journal Article |
Gurwitz D, Bregman-Eschet Y . Personal genomics services: whose genomes?. Eur J Hum Genet, 17 (7):883-9. 2009. [PubMed] | Journal Article |
Feldman M . The biology of ancestry: DNA, genomic variation, and race. In H. Markus, P. Moya Doing Race: 21 Essays for the 21st Century. New York, NY: W. W. Norton & Company. 136-59. 2010. | Book Chapter |
Greely HT . Law and the revolution in neuroscience: an early look at the field. Akron Law Review, 42 687-716. 2009. | Journal Article |
Vernarelli JA, Roberts JS, Hiraki S, Chen CA, Cupples LA, Green RC . Effect of Alzheimer disease genetic risk disclosure on dietary supplement use. Am J Clin Nutr, 91 (5):1402-7. 2010. [PubMed] | Journal Article |
Muelen R. ter, Savulescu J, Kahane G Eds. Enhancing Human Capacities. Hoboken, NJ: Wiley-Blackwell 2011. | Book |
Twomey J . Ethical, legal, psychosocial, and cultural implications of genomics for oncology nurses. Semin Oncol Nurs, 27 (1):54-63. 2011. [PubMed] | Journal Article |
Greely HT . Collecting biomeasures in the Panel Study of Income Dynamics: ethical and legal concerns. Biodemography and Social Biology, 55 (2):270-88. 2009. [PubMed] | Journal Article |
Vitti JJ, Cho MK, Tishkoff SA, Sabeti PC . Human evolutionary genomics: ethical and interpretive issues. Trends Genet, 28 (3):137-45. 2012. [PubMed] | Journal Article |
Greely HT . Get ready for the flood of fetal gene screening. Nature, 469 (7330):289-91. 2011. [PubMed] | Journal Article |
Dewey FE, Chen R, Corder SP, Ormond KE, Caleshu C, Karczewski KJ et al. Phased whole-genome genetic risk in a family quartet using a major allele reference sequence. PLoS Genet, 7 (9):e1002280. 2011. [PubMed Central] | Journal Article |
Havard, M., Cho, M. K. & Magnus, D. Triggers for research ethics consultation. Sci. Transl. Med. 4, 118cm1 (2012). [PubMed] |
Journal Article |
Dudley J, Butte AJ . Enabling integrative genomic analysis of high-impact human diseases through text mining. Pac Symp Biocomput, 580-91. 2008. [PubMed] | Journal Article |
Rissman, J., Greely, H. T. & Wagner, A. D. Detecting individual memories through the neural decoding of memory states and past experience. Proc. Natl. Acad. Sci. U. S. A. 107, 9849–54 (2010). [PubMed Central] |
Journal Article |
Richardson, H. S. & Cho, M. K. Secondary researchers’ duties to return incidental findings and individual research results: a partial-entrustment account. Genet. Med. 14, 467–72 (2012). [PubMed] |
Journal Article |
Fanos JH . New "first families": the psychosocial impact of new genetic technologies. Genet Med, 14 (2):189-90. 2012. [PubMed] | Journal Article |
Ormond, K. E. et al. Challenges in the clinical application of whole-genome sequencing. Lancet 375, 1749–51 (2010). [The Lancet] |
Journal Article |
Human Microbiome Project Consortium. Structure, function and diversity of the healthy human microbiome. Nature 486, 207–14 (2012). [PubMed Central] |
Journal Article |
Human Microbiome Project Consortium & The Human Microbiome Project Consortium. A framework for human microbiome research. Nature 486, 215–21 (2012). [PubMed] |
Journal Article |
Last updated: January 24, 2019