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.
Press, N.A., W. Burke, and S.J. Durfy. "How are Jewish Women Different From all Other Women? An Anthropological Perspective on Genetic Susceptibility Testing for Breast Cancer Among Ashkenazi Jewish Women." Health Matrix: Journal of Law-Medicine. 1997: 7(1): 135-162. [PubMed] |
Journal Article |
Bars J., J. Hull and W. Burke. "Breast Cancer." Genline, Roberta Pagon, Ed. 1998. |
Book Chapter |
Burke, W., N. Press and L. Pinsky. [Invited editorial] "BRCA1 and BRCA2: a small part of the puzzle." J Natl Cancer Inst. June 1999; 91(11): 904-905. [PubMed] |
Journal Article |
Press N.A., Burke W. "If You Care About Women's Health, Perhaps You Should Care About the Psychosocial Risks of Direct Marketing of Tamoxifen to Consumers." Effective Clinical Practice. 2000; 3(2): 98-103. |
Journal Article |
Press N.A., Yasui Y., Reynolds S., Durfy S.J., Burke W. "Women's Interest in Genetic Testing for Breast Cancer Susceptibility May be Based on Unrealistic Expectations." American Journal of Medical Genetics. 2001; 99: 99-110. |
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. 2001; 106: 233-240 |
Journal Article |
Burke W, Press N . Ethical obligations and counseling challenges in cancer genetics. J Natl Compr Canc Netw, 4 (2):185-91. 2006. [PubMed] | Journal Article |
Burke W, Tarini B, Press NA, Evans JP . Genetic screening. Epidemiol Rev, 33 (1):148-64. 2011. [PubMed Central] | Journal Article |
Carlsten C, Burke W . Potential for genetics to promote public health: genetics research on smoking suggests caution about expectations. JAMA, 28 (20):2480-2. 2006. [PubMed] | Journal Article |
Carlson RJ . Preemptive public policy for genomics. J Health Polit Policy Law, 33 (1):39-51. 2008. [PubMed] | Journal Article |
Carlsten C, Halperin A, Crouch J, Burke W . Personalized medicine and tobacco-related health disparities: is there a role for genetics?. Ann Fam Med, 9 (4):366-71. 2011. [PubMed] | Journal Article |
Beskow LM, Burke W, Fullerton SM, Sharp RR . Offering aggregate results to participants in genomic research: opportunities and challenges. Genet Med, 14 (4):490-6. 2012. [PubMed] | Journal Article |
Tabor, H. K., Berkman, B. E., Hull, S. C. & Bamshad, M. J. Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research. Am. J. Med. Genet. Part A 155A, 2916–24 (2011). [PubMed] |
Journal Article |
Burke, W . Commentary to "My Identical Twin Sequenced Our Genome": Cautionary Genomics.. J Genet Couns., 2017. [PubMed] (J Genet Couns. 2017 Apr;26(2):279-280. doi: 10.1007/s10897-016-0054-7. Epub 2016 Dec 20.) | Journal Article |
Fullerton SM. On the absence of biology in philosophical considerations of race. In Race and |
Book Chapter |
West KM, Blacksher E, Burke W. Genomics, Health Disparities, and Missed |
Journal Article |
Guzauskas, G. F., et al. (2012). "A risk-benefit assessment of prasugrel, clopidogrel, and genotype-guided therapy in patients undergoing percutaneous coronary intervention." Clin Pharmacol Ther 91(5): 829-837. [PubMed] [PubMed] |
Journal Article |
McGuire, A. L. & Burke, W. Health system implications of direct-to-consumer personal genome testing. Public Health Genomics 14, 53–8 (2011). [PubMed Central] |
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.J. et al. "Genetic Grammar: Health, Illness, and the Human Genome Project." Hastings Center Report. 1992; Special Supplement 22(4): S1. [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 . 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 |
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 |
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 |
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 |
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 |
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 |
Cho MK. Racial and ethnic categories in biomedical research: there is no baby in the bathwater. J Law Med Ethics, 34(3):497-9. 2006. [PubMed] |
Journal Article |
Illes, J. et al. Ethics. Incidental findings in brain imaging research. Science (80-. ). 311, 783–4 (2006). [PubMed Central] |
Journal Article |
Illes J. Pandora's box' of incidental findings in brain imaging research. Nature Clinical Practice Neurology 2:60-61. 2006 [PubMed] |
Journal Article |
Illes, J., De Vries, R., Cho, M. K. & Schraedley-Desmond, P. ELSI priorities for brain imaging. Am. J. Bioeth. AJOB 6, W24–31 (2006). [PubMed Central] |
Journal Article |
Caulfield T, McGuire AL, Cho MK, et al. Research ethics recommendations for whole genome research: Consensus statement. PLoS Biology, 6(3):0430-35. 2008. [PubMed] |
Journal Article |
Illes, J. et al. Practical approaches to incidental findings in brain imaging research. Neurology 70, 384–90 (2008). [PubMed Central] |
Journal Article |
Cho, M. K., et al. (2008). "Research ethics consultation: the Stanford experience." Irb 30(6): 1-6. [PubMed] [PubMed] |
Journal Article |
Greely HT. The Uneasy Ethical and Legal Underpinnings of Large-Scale Genomic Biobanks. ANN. REV. HUM GENETICS & GENOMICS, 8:343-364. 2007. [PubMed] |
Journal Article |
Tischler, R., Hudgins, L., Blumenfeld, Y. J., Greely, H. T., & Ormond, K. E. (2011). Noninvasive prenatal diagnosis: pregnant women’s interest and expected uptake. Prenatal Diagnosis, 31(13), 1292–9. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/22028097 [PubMed] |
Journal Article |
Tobin SL, Lee SS-J, Greely HT, Cho MK . Not a loophole: commercial exploitation of an IRB error. PLoS Genet, 2010. [Full Text] | Journal Article |
Sankar, P., Cho, M. K., Wolpe, P. R. & Schairer, C. What is in a cause? Exploring the relationship between genetic cause and felt stigma. Genet. Med. 8, 33–42 (2006). [Nature] |
Journal Article |
Shirts, B. H. & Parker, L. S. Changing interpretations, stable genes: responsibilities of patients, professionals, and policy makers in the clinical interpretation of complex genetic information. Genet. Med. 10, 778–83 (2008). [PubMed] |
Journal Article |
Tabor, H. K. & Cho, M. K. Ethical implications of array comparative genomic hybridization in complex phenotypes: points to consider in research. Genet. Med. 9, 626–631 (2007). [PubMed] |
Journal Article |
Ormond, K. E., Cirino, A. L., Helenowski, I. B., Chisholm, R. L. & Wolf, W. A. Assessing the understanding of biobank participants. Am. J. Med. Genet. Part A 149A, 188–98 (2009). [PubMed] |
Journal Article |
Ormond, K. E. et al. Information preferences of high literacy pregnant women regarding informed consent models for genetic carrier screening. Patient Educ. Couns. 75, 244–50 (2009). [PubMed] |
Journal Article |
Ohata, T., Tsuchiya, A., Watanabe, M., Sumida, T. & Takada, F. Physicians’ opinion for “new” genetic testing in Japan. J. Hum. Genet. 54, 203–8 (2009). [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 |
Ormond, K. E., Smith, M. E. & Wolf, W. A. The Views of Participants in DNA Biobanks. Stanford J. Law, Sci. Policy 1, 80–87 (2010). [Stanford Law School] |
Journal Article |
Lappe M, Tabor H . The Autism Genetic Resource Exchange: Changing Pace, Priorities, and Roles in Discovery Science. In Burke W, Edwards KA, Goering S, Holland S, Trinidad SB Achieving Justice in Genomic Translation: Re-Thinking the Pathway to Benefit. New York, NY: Oxford University Press. 56-71. 2011. | Book Chapter |
Ormond, K. E. et al. Medical and graduate students’ attitudes toward personal genomics. Genet. Med. 13, 400–8 (2011). [PubMed] |
Journal Article |
Floyd, E., Allyse, M. A., & Michie, M. (2016). Spanish- and English-Speaking Pregnant Women's Views on cfDNA and Other Prenatal Screening: Practical and Ethical Reflections. J Genet Couns, 25(5), 965-977. doi:10.1007/s10897-015-9928-3 [PubMed] |
Journal Article |
Murdoch, C. E. & Scott, C. T. Stem cell tourism and the power of hope. Am. J. Bioeth. AJOB 10, 16–23 (2010). [PubMed] |
Journal Article |
Harvey, H., Havard, M., Magnus, D., Cho, M. K. & Riedel-Kruse, I. H. Innocent fun or ‘microslavery’? An ethical analysis of biotic games. Hastings Cent. Rep. 44, 38–46 [PubMed] |
Journal Article |
Murdoch, C. E. & Scott, C. T. Response to open peer commentaries on “Stem cell tourism and the power of hope”. Am. J. Bioeth. AJOB 10, W1–3 (2010). [PubMed] |
Journal Article |
Steinbach, R. J., et al. (2016). ""This lifetime commitment": Public conceptions of disability and noninvasive prenatal genetic screening." Am J Med Genet A 170a(2): 363-374. [PubMed] [Wiley Online Library] |
Journal Article |
Frueh FW, Greely HT, Green RC, Hogarth S, Siegel S . The future of direct-to-consumer clinical genetic tests. Nat Rev Genet, 12 (7):511-5. 2011. [PubMed] | Journal Article |
Allyse M, Milner LC, Cho MK . Ethics watch: the G.I. genome: ethical implications of genome sequencing in the military. Nat Rev Genet, 12 (9):589. 2011. [PubMed] | Journal Article |
Wade CH, Wilfond BS . Ethical and clinical practice considerations for genetic counselors related to direct-to-consumer marketing of genetic tests. Am J Med Genet C Semin Med Genet, 142C (4):284-92, discussion 293. 2006. [PubMed] | Journal Article |
Ashley EA, Butte AJ, Wheeler MT et al. Clinical assessment incorporating a personal genome. Lancet, 375 (9725):1525-35. 2010. [PubMed] | Journal Article |
Wheeler, M., et al. (2009). "A new era in clinical genetic testing for hypertrophic cardiomyopathy." J Cardiovasc Transl Res 2(4): 381-391. [PubMed] [PubMed] |
Journal Article |
Austin MA, Hair MS, Fullerton SM . Research guidelines in the era of large-scale collaborations: an analysis of Genome-wide Association Study Consortia.. Am J Epidemiol, 175 (9):962-9. 2012. [PubMed] | Journal Article |
Scott, C. T., DeRouen, M. C. & Crawley, L. M. The Language of Hope: Therapeutic Intent in Stem-Cell Clinical Trials. AJOB Prim. Res. 1, 4–11 (2010). [Taylor & Francis Online] |
Journal Article |
Cho M . Patently unpatentable: implications of the Myriad court decision on genetic diagnostics. Trends Biotechnol, 28 (11):548-51. 2010. [PubMed] | Journal Article |
Greely H, King J . The coming revolution in prenatal genetic testing. Professional ethics report : newsletter of the American Association for the Advancement of ScienceProf Ethics Rep, 23 (2):1-8. 2010. | Journal Article |
Wilcken B . Ethical issues in genetics. J Paediatr Child Health, 47 (9):668-71. 2011. [PubMed] | Journal Article |
Greely HT, Cho MK, Hogle LF, Satz DM . Thinking about the human neuron mouse. Am J Bioeth, 7 (5):27-40. 2007. [PubMed] | Journal Article |
Simon, B. M. & Scott, C. T. Unsettled expectations: how recent patent decisions affect biotech. Nat. Biotechnol. 29, 229–30 (2011). [PubMed] |
Journal Article |
Greely HT . From Nuremberg to the Human Genome: The Rights of Human Research Participants. In Rubenfeld S Medicine After the Holocaust: From the Master Race to the Human Genome and Beyond. New York, NY: Palgrave Macmillan. 185-200. 2010. | Book Chapter |
Brown T, Murphy E . Through a scanner darkly: functional neuroimaging as evidence of a criminal defendant's past mental states. Stanford Law Rev, 62 (4):1119-1208. 2010. [PubMed] | Journal Article |
Allyse, M. A. et al. Best ethical practices for clinicians and laboratories in the provision of noninvasive prenatal testing. Prenat. Diagn. 33, 656–61 (2013). [PubMed] |
Journal Article |
Last updated: January 24, 2019