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.
Goering S, Holland S, Fryer-Edwards K. Transforming genetic research practices with marginalized communities: a case for responsive justice. Hast Center Report, 38(2):43-53. 2008. [PubMed] |
Journal Article |
Caulfield, T., et al. (2009). "Race and ancestry in biomedical research: exploring the challenges." Genome Medicine 1(1): 8. [BioMedCentral] [PubMed] |
Journal Article |
Henrikson, N. B., Burke, W. & Veenstra, D. L. Ancillary risk information and pharmacogenetic tests: social and policy implications. Pharmacogenomics J. 8, 85–9 (2008). [PubMed] |
Journal Article |
McGuire, A. L. & Burke, W. An unwelcome side effect of direct-to-consumer personal genome testing: raiding the medical commons. JAMA J. Am. Med. Assoc. 300, 2669–71 (2008). [PubMed Central] |
Journal Article |
Burke W, Psaty BM. Personalized medicine in the era of genomics. JAMA, 298(14):1682-4. 2007. [PubMed] |
Journal Article |
Haga, S. B. & Burke, W. Pharmacogenetic testing: not as simple as it seems. Genet. Med. 10, 391–5 (2008). [PubMed] |
Journal Article |
Veenstra DL, Harris J, Gibson RL, Rosenfeld M, Burke W, Watts C. Pharmacogenomic testing to prevent aminoglycoside-induced hearing loss in cystic fibrosis patients: Potential impact on clinical, patient, and economic outcomes. Genet Med, 9(10):695-704. 2007. [PubMed] |
Journal Article |
Haga, S. B., Thummel, K. E. & Burke, W. Adding pharmacogenetics information to drug labels: lessons learned. Pharmacogenet. Genomics 16, 847–54 (2006). [PubMed] |
Journal Article |
McGrath, B. B. & Edwards, K. L. When family means more (or less) than genetics: the intersection of culture, family and genomics. J. Transcult. Nurs. 20, 270–7 (2009). [PubMed Central] |
Journal Article |
Clayton, E. W. et al. Managing incidental genomic findings: legal obligations of clinicians. Genet. Med. 15, 624–9 (2013). [PubMed Central] |
Journal Article |
Kaye, J. et al. Research priorities. ELSI 2.0 for genomics and society. Science (80-. ). 336, 673–4 (2012). [PubMed] |
Journal Article |
Burke, W., Trinidad, S. B. & Clayton, E. W. Seeking Genomic Knowledge: The Case for Clinical Restraint. Hastings Law J. 64, 1650–1664 (2013). [PubMed Central] |
Journal Article |
Durfy, S.J, D.J. Bowen, A. McTiernan, J. Sporleder, and W. Burke. "Attitudes and Interest in Genetic Testing for Breast and Ovarian Cancer Susceptibility in Diverse Groups of Women in Western Washington." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 369-375. [Pubmed] [Pubmed] |
Journal Article |
Pinsky, L.E. and R.A. Deyo. "Clinical Guidelines: A Strategy for Translating Evidence into Clinical Practice," in J. Geyman, R. Deyo and S. Ramsey, eds. Evidence-Based Clinical Practice: Concepts and Approaches. Woburn: Butterworth-Heinemann Medical, 2000. 177p |
Book Chapter |
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 |
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, 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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
Last updated: January 24, 2019