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.
Edwards KL, Lemke AA, Trinidad SB, Lewis SM et al. Genetics researchers' and IRB professionals' attitudes toward genetic research review: a comparative analysis. Genet Med, 14 (2):236-42. 2012. [PubMed] | Journal Article |
Burke W, Press N. Genetics as a tool to improve cancer outcomes: ethics and policy. Nat Rev Cancer, 6(6):476-82. 2006. [PubMed] |
Journal Article |
Ramsey, S. D. et al. Family history assessment to detect increased risk for colorectal cancer: conceptual considerations and a preliminary economic analysis. Cancer Epidemiol. Biomarkers Prev. 14, 2494–500 (2005). [PubMed Central] |
Journal Article |
Fryer-Edwards K, Fullerton SM. Relationships with test-tubes: where's the reciprocity? American Journal of Bioethics, 6(6):36-38. 2006 [PubMed] |
Journal Article |
Fullerton SM, Knerr S, Burke W . Finding a place for genomics in health disparities research. Public Health Genomics, 15 (3-4):156-63. 2012. [PubMed] | Journal Article |
Veenstra DL, Burke W. Pharmacogenomics and public health. Public Health Genom, 2008. [PubMed] [PubMed Central] |
Journal Article |
Woods B, Veenstra D, Hawkins N . Prioritizing pharmacogenetic research: a value of information analysis of CYP2D6 testing to guide breast cancer treatment. Value Health, 14 (8):989-1001. 2011. [PubMed] | Journal Article |
Shields, AE, Fullerton, SM, & Olden, K. Genes, environment, and cancer disparities. In Dimensions of Cancer Disparities, ed. H.. Koh, Springer: New York, NY. [Springer Link] |
Book Chapter |
Paradies YC, Montoya MJ, Fullerton SM. Racialized Genetics and the Study of Complex Diseases: the thrifty genotype revisited. Perspectives in Biology and Medicine, 50(2):203-227. 2007. [PubMed] |
Journal Article |
Beitelshees, A. L., & Veenstra, D. L. (2011). Evolving research and stakeholder perspectives on pharmacogenomics. JAMA, 306(11), 1252–1253. [PubMed] |
Journal Article |
Lemke, A. A., Trinidad, S. B., Edwards, K. L., Starks, H. & Wiesner, G. L. Attitudes toward genetic research review: results from a national survey of professionals involved in human subjects protection. J. Empir. Res. Hum. Res. Ethics 5, 83–91 (2010). [PubMed Central] |
Journal Article |
Laberge, A.-M., Psaty, B. M., Hindorff, L. A. & Burke, W. Use of Factor V Leiden genetic testing in practice and impact on management. Genet. Med. 11, 750–6 (2009). [PubMed Central] |
Journal Article |
Laberge, A.-M. & Burke, W. Clinical and public health implications of emerging genetic technologies. Semin. Nephrol. 30, 185–94 (2010). [PubMed Central] |
Journal Article |
Lemke, A. A., Smith, M. E., Wolf, W. A. & Trinidad, S. B. Broad data sharing in genetic research: views of institutional review board professionals. IRB Ethics Hum. Res. 33, 1–5 (2011). [PubMed Central] |
Journal Article |
Meacham, M. C., Starks, H., Burke, W. & Edwards, K. Researcher perspectives on disclosure of incidental findings in genetic research. J. Empir. Res. Hum. Res. Ethics 5, 31–41 (2010). [PubMed Central] |
Journal Article |
Spanier B.W.M., Bruno M.J., Burke W., et al. "Genetic testing." New Engl J Med. 348(11): 1066-1066 March 13, 2003. |
Journal Article |
Culver JO, Bowen DJ, Reynolds SE, Pinsky LE, Press N, Burke W . Breast cancer risk communication: assessment of primary care physicians by standardized patients. Genet Med, 11 (10):735-41. 2009. [PubMed] | Journal Article |
Burke W, Laya MB . Genetic risk and breast cancer survival: another link in the chain of evidence. J Natl Cancer Inst, 91 (3):201-3. 1999. [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.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 |
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 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 |
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 |
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 |
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 |
Mouchawar, J. et al. Impact of direct-to-consumer advertising for hereditary breast cancer testing on genetic services at a managed care organization: A naturally-occurring experiment. Genet. Med. 7, 191–197 (2005). [Nature] |
Journal Article |
Sankar, P., Cho, M. K. & Mountain, J. Race and ethnicity in genetic research. Am. J. Med. Genet. Part A 143A, 961–70 (2007). [PubMed Central] |
Journal Article |
Singh, J., Illes, J., Lazzeroni, L. & Hallmayer, J. Trends in US autism research funding. J. Autism Dev. Disord. 39, 788–95 (2009). [PubMed] |
Journal Article |
Singh, J., Hallmayer, J. & Illes, J. Interacting and paradoxical forces in neuroscience and society. Nat. Rev. Neurosci. 8, 153–60 (2007). [PubMed Central] |
Journal Article |
Greely, H. T. in Impact Behav. Sci. Crim. Law (Farahany, N. A.) 161–182 (Oxford University Press, 2009). |
Book Chapter |
Sankar P, Wolpe PR, Jones NL, Cho MK. How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States. Community Genet, 9(2):78-86. 2006. [PubMed] |
Journal Article |
Butte AJ. Kohane IS. Creation and implications of a phenome-genome network. Nature Biotechnology, 24(1):55-62. 2006. [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 |
Cho MK, Relman DA . Genetic technologies. Synthetic "life," ethics, national security, and public discourse. Science, 329 (5987):38-9. 2010. [PubMed] | Journal Article |
Allyse, M. & Michie, M. Not-so-incidental findings: the ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing. Trends Biotechnol. 31, 439–41 (2013). [PubMed Central] |
Journal Article |
Cho M, Wolpert M . Not yet in sequence: Clinical, technical, ethical questions linger over personal genomics. Mod Healthc, 40 (47):24. 2010. [PubMed] | Journal Article |
McCormick, J. B., Boyce, A. M., Ladd, J. M. & Cho, M. Barriers to Considering Ethical and Societal Implications of Research: Perceptions of Life Scientists. AJOB Prim. Res. 3, 40–50 (2012). [PubMed] |
Journal Article |
Valenzuela RK, Henderson MS, Walsh MH, Garrison NA, Kelch JT, Cohen-Barak O, Erickson DT, John Meaney F, Bruce Walsh J, Cheng KC, Ito S, Wakamatsu K, Frudakis T, Thomas M, Brilliant MH . Predicting phenotype from genotype: normal pigmentation. J Forensic Sci, 55 (2):315-22. 2010. [PubMed] | Journal Article |
Magnus, D. Translating stem cell research: challenges at the research frontier. J. Law, Med. Ethics 38, 267–76 (2010). [PubMed] |
Journal Article |
Brown T, Lowenberg K . Biobanks , Privacy , and the Subpoena Power. Stanf J Law Sci Policy, 1 88-101. 2009. [Full Text] | Journal Article |
Lee, S. S.-J. & Mudaliar, A. Medicine. Racing forward: the Genomics and Personalized Medicine Act. Science (80-. ). 323, 342 (2009). [PubMed Central] |
Journal Article |
Sayres, L. C. & Cho, M. K. Cell-free fetal nucleic acid testing: a review of the technology and its applications. Obstet. Gynecol. Surv. 66, 431–42 (2011). [PubMed] |
Journal Article |
Latchaw, M., Ormond, K., Smith, M., Richardson, J. & Wicklund, C. Health insurance coverage of genetic services in Illinois. Genet. Med. 12, 525–31 (2010). [PubMed] |
Journal Article |
Sayres, L. C., Allyse, M., Norton, M. E. & Cho, M. K. Cell-free fetal DNA testing: a pilot study of obstetric healthcare provider attitudes toward clinical implementation. Prenat. Diagn. 31, 1070–6 (2011). [PubMed] |
Journal Article |
Ladd, J. M., Lappé, M. D., McCormick, J. B., Boyce, A. M. & Cho, M. K. The “how” and “whys” of research: life scientists’ views of accountability. J. Med. Ethics 35, 762–7 (2009). [PubMed] |
Journal Article |
Caulfield T, Fullerton SM, Ali-Khan SE, Arbour L, Burchard EG, Cooper R, Hardy BJ, Harry S, Hyde-Lay R, Kahn J, Kittles R, Koenig B, Lee SSJ, Malinowski M, Ravitsky V, Sankar P, Scherer SW, Séguin B, Shickle D, Suarez-Kurtz G, Daar AS . Race and ancestry in biomedical research: exploring the challenges. Genome Med, 1 (1):8. 2009. [PubMed Central] | Journal Article |
Mitchell, P. B. et al. Predictive and diagnostic genetic testing in psychiatry. Clin. Lab. Med. 30, 829–46 (2010). [PubMed] |
Journal Article |
Cho, M.K., P. Sankar, P.R. Wolpe and L. Godmilow. "Commercialization of BRCA1/2 Testing: Practitioner Awareness and use of a new genetic test." Am J Med Genet. 1999; 83: 157-163. [PubMed] |
Journal Article |
Sankar, P., Wolpe, P. R., Jones, N. L. & Cho, M. How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States. Community Genet. 9, 78–86 (2006). [PubMed Central] |
Journal Article |
Cho, M.K., Illangasekare S., Weaver M.A., Leonard D.G.B., Merz J.F. "Effects of Patents and Licenses on the Provision of Clinical Genetic Testing Services." Journal of Molecular Diagnostics. 2003; 1 (5): 3-8. [PubMed] |
Journal Article |
Last updated: January 24, 2019