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.
Wasserman, D. "Personal Identity and Moral Appriasal of Prenatal Genetic Therapy." in Mutating Concepts, Evolving Disciplines: Genetics, Medicine, and Society. Parker, L. and Ankeny, R. eds. (Kluwer, 2002) |
Book Chapter |
Gehring, V. (ed) "Genetic Prospects: Essays on Biotechnology, Ethics, and Public Policy." Institute for Philosophy and Public Policy Studies. Rowman & Littlefield Publishers, August 2003. |
Journal Article |
Sagoff, M. "Are Genes Inventions? An Ethical Analysis of Gene Patents." in J. Burley and J. Harris, A Companion to Genethics. Oxford: Blackwell Publishers, 2002. p. 420-37. |
Book Chapter |
Sagoff, M. "Intellectual Property and Products of Nature." American Jounral of Bioethics. 2002; 2(3): 12-13. |
Journal Article |
Sagoff, M. "Genetic Engineering and the Concept of the Natural." in Philosophy and Public Affairs Quarterly. Spring/Summer 2001; 21(2/3): 2-10. |
Journal Article |
Wasserman, D., Wachbroit, R. "Ethical Issues in Reproductive Technology." in Oxford Handbook of Practical Ethics. Lafollette, H. ed. (Oxford University Press, 2003) |
Book Chapter |
Wasserman, D. "Species and Races, Chimeras and Multiracial People." American Journal of Bioethics. 2003; 3(3). |
Journal Article |
Wasserman, D. "This Old House: The Human Genome and Human Body as Objects of Historic Preservation." Politics and the Life Sciences. March 2003; 22(1): 43-47. |
Journal Article |
Sagoff, M. "Transgenic Chimeras," American Journal of Bioethics. 2003; 3(3). |
Journal Article |
Sagoff, M. "Biotechnology and Agriculture: The Common Wisdom and Its Critics." Indiana Journal of Global Legal Studies. Fall 2001; 9(1): 13-34. |
Journal Article |
David Wasserman (2005) What Qualifies as a Live Embryo?, The American Journal of Bioethics, 5:6, 23-25, DOI: 10.1080/15265160500318795 [Taylor Francis Online] |
Journal Article |
Sagoff, M. (n.d.). On the compatibility of a conservation ethic with biological science. Conservation Biology?: the Journal of the Society for Conservation Biology., 21(2), 337–345. https://doi.org/10.1111/j.1523-1739.2006.00634.x [PubMed Central] |
Journal Article |
Mark Sagoff (2007) A Transcendental Argument for the Concept of Personhood in Neuroscience, The American Journal of Bioethics, 7:1, 72-73, DOI: 10.1080/15265160601064355 [Taylor Francis Online] |
Journal Article |
Sankar P. "MEDLINE definitions of race and ethnicity and their application to genetic research." Nat Genet. 34(2): 119-119 June 2003. |
Journal Article |
Cho MK, Sankar P. "Forensic genetics and ethical, legal and social implications beyond the clinic." Nat Genet. Suppl. S NOV 2004; 36 (11): S8-S12. [PubMed] |
Journal Article |
Sankar P., Cho M.K. "Toward a new vocabulary of human genetic variation." Science November 2002; 298(15): 1337-1338. |
Journal Article |
Rebbeck T.R., Halbert, C.H., Sankar, P. "Genetics, epidemiology, and cancer disparities: Is it black and white?" J Clin Oncol. 2006; 24(14): 2164-2169. [PubMed] |
Journal Article |
Sankar, P., Kahn, J. "BiDil: Race medicine or race marketing?" Health Affair. 2005; 24(6): W5455-W5463. [PubMed] |
Journal Article |
Rebbeck, T.R., Sankar, P. "Ethnicity, ancestry, and race in molecular epidemiologic research." Cancer Epidem Biomar 2005; 14(11): 2467-71. [PubMed] |
Journal Article |
Sankar, P, Kahn, JD. Correcting Carlson. Health Affairs. 2005. [Full Text] |
Journal Article |
Kahn, J, Sankar, P. Being specific about race-specific medicine. Health Affairs, 25(5):w375-7. 2006. [PubMed] |
Journal Article |
Sankar, P, Cho, MK, Mountain, J. Race and ethnicity in genetic research. American Journal of Medical Genetics, Part A, 9(143A):961-970. 2007. [PubMed] |
Journal Article |
Caulfield, T, Fullerton, SM, Ali-Khan, SE, Arbour, L, Burchard, EG, Cooper, RS, Hardy, B, Harry, S, Hyde-Lay, R, Kahn, J, Kittles, R, Koenig, BA, Lee, SS-J, 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 Medicine, 1(1):8. 2009. [PubMed Central] |
Journal Article |
Sankar, P. Hasty generalization and exaggerated certainties: Reporting genetic findings in health disparities research. New Genetics and Society, 25(3):249-254. 2006. |
Journal Article |
Sankar, P, Cho, MK, Condit, CM, Hunt, LM, Koenig, B, Marshall, P, Lee, SS, Spicer, P. Genetic Research and Health Disparities. Journal of the American Medical Association, 297(24):2985-9. 2004. [PubMed Central] |
Journal Article |
Sankar, P., Cho, M.K., Wolpe, P.R., et al. "What is in a cause? Exploring the relationship between genetic cause and felt stigma". Genet Med 2006; 8(1): 33-42. [PubMed] |
Journal Article |
Cho, M, Sankar, P. Reply to "Getting the science and the ethics right in forensic genetics". Nature Genetics, 37(85):450-1. 2007. |
Journal Article |
Cho, MK. Racial and ethnic categories in biomedical research: There is no baby in the bathwater. Journal of Law, Medicine & Ethics, 34:497-499. 2006;. [PubMed] |
Journal Article |
Lee, SS, Mountain, J, Koenig, B, Altman, R, Brown, M, Camarillo, A, Cavalli-Sforza, L, Cho, M, Eberhardt, J, Feldman, M, Ford, R, Greely, H, King, R, Markus, H, Satz, D, Snipp, M, Steele, C, Underhill, P. The ethics of characterizing difference: guiding principles on using racial categories in human genetics. Genome Biology, 9:404. 2008. [PubMed Central] |
Journal Article |
Human Microbiome Project Consortium. Structure, function and diversity of the healthy human microbiome. Nature 486, 207–14 (2012). [PubMed] |
Journal Article |
Sarkar, S. Genetics and Reductionism. Cambridge University Press. November 1998. |
Book |
Scanlon, C. and W. Fibison. Managing Genetic Information: Implications for Nursing Practice. Washington, DC: American Nurses Association, 1995. 60p. |
Book |
Albert E. Scherr, "Genetic Privacy and the Fourth Amendment: Unregulated Surreptitious DNA Harvesting," 47 GA. L. REV. 445 (2013). |
Journal Article |
Schneider, William H., guest Ed. special issue of History and Philosophy of the Life Sciences on "The First Genetic Marker: Blood group Research, Race and Disease, 1900-1950," 18 (1996), 273-362. |
Book Chapter |
Schneider W.H. "Blood Group Research in Great Britain, France and the United States between the World Wars." Yearbook of Physical Anthropology. 1995; 38: 77-104 |
Journal Article |
Schneider W.H. "The Grouping of Blood: How Karl Landsteiner's Discovery Changed Medicine." NEH Magazine. 1996; 17: 48-50. |
Journal Article |
Schneider W.H. "Hérédité, sang, et opposition á l'immigration dans la France des années trente," Ethnologie francaise, 24 (1994), 104-17. |
Journal Article |
Schneider W.H. "La Recherche sur les Groupes Sanguins avant la DeuxiSme Guerre mondiale." Les sciences biologiques et m 1Adicales en France 1920-1950, eds. Claude Debru, Jean Gayon et Jean-Fran?ois Picard (Paris: CNRS-Editions, 1994), 311-27 |
Book Chapter |
Schneider, W.H. "The History of Research on Blood Group Genetics: Initial Discovery and Diffusion." History and Philosophy of the Life Sciences (W.H. Schneider, guest editor) 1996: 18(3); 277-303. |
Book Chapter |
Garratty, George, "Association of Blood Groups and Disease. Do Blood Group Antigens and Antibodies Have a Biological Role?" 321-44. [PubMed] |
Journal Article |
Wailoo, Keith, "Genetic markers of Segregation: Sickle Cell Anemia, Thalasssemia, and Racial Ideology in American Medical Writing, 1920-1950," 305-320. |
Journal Article |
Marks, Jonathan, "The Legacy of Serological Studies In American Physical Anthropology," 345-62. [PubMed] |
Journal Article |
Stern AM. We Cannot Make a Silk Purse Out of a Sow's Ear: Eugenics in the Hoosier Heartland. Indiana Magazine of History, 103(1):1-38. 2007. |
Journal Article |
Senier, L., Lee, R., & Nicoll, L. (2017). The strategic defense of physician autonomy: State public health agencies as countervailing powers. Soc Sci Med, 186, 113-121. doi:10.1016/j.socscimed.2017.06.007 [PubMed] |
Journal Article |
Henderson GE, Wolf SM, Kuczynski KJ, Joffe S, Sharp RR, Parsons DW, Knoppers BM, Yu JH, Appelbaum PS . The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations.. J Law Med Ethics, 42 (3):344-55. 2014. [SAGE] | Journal Article |
Human Microbiome Project Consortium. Structure, function and diversity of the healthy human microbiome. Nature 486, 207–14 (2012). [PubMed Central] |
Journal Article |
Shields AE. Trends in private insurance, Medicaid/SCHIP, and the health-care safety net: implications for asthma disparities. Chest, 132(5 Suppl):818S-30S. 2007. [PubMed] |
Journal Article |
Shields AE, Fortun M, Hammonds E, King PA, Lerman C, Rapp R, Sullivan PF. The use of race variables in genetic studies of complex traits and the goal of reducing health disparities: A transdisciplinary perspective. American Psychologist, 6(1):77-103. 2005. [PubMed] |
Journal Article |
Schnoll, R. A., Rukstalis, M., Wileyto, E. P. & Shields, A. E. Smoking cessation treatment by primary care physicians: An update and call for training. Am. J. Prev. Med. 31, 233–9 (2006). [PubMed] |
Journal Article |
Park E, Kleimann S, Pelan J, Shields AE. Anticipating clinical integration of genetically-tailored tobacco dependence treatment: Perspectives of primary care physicians. Nicotine and Tobacco Research, 9(2):271-9. 2007. [PubMed] |
Journal Article |
Shields AE, Blumenthal D, Weiss KB, Comstock CB, Currivan D, Lerman C. Barriers to translating emerging genetic research on smoking into clinical practice: perspectives of primary care physicians. Journal of General Internal Medicine, 20(2): 131-138. 2005. [PubMed] |
Journal Article |
Quaid, KA, Swenson, MM, Sims, SL, Harrison, JM, Moskowitz, C, Stepanov, N, Suter, GW, Westphal, BJ, Huntington Study Group PHAROS Investigators and Coordinators. What were you thinking?: individuals at risk for Huntington Disease talk about having children. Journal of Genetic Counseling. 19(6):606-17. 2010. [PubMed] |
Journal Article |
Hersch S, Erwin C and the Event Monitoring Committee of the Huntington Study Group. Monitoring reportable events and unanticipated problems: the PHAROS and PREDICT studies of Huntington?s disease. IRB: Ethics & Human Research 29(3): 11-16. 2007. [PubMed] |
Journal Article |
Hogarth P, Kayson E, Kieburtz K, Marder D. Oakes D, Rosas D, Shoulson I, Wexler NS, Young AB, Zhao H. The US-Venezuela Huntington's Disease Collaborative Research Group and the Huntington Study Group. Inter-Rater Agreement in the Assessment of the Motor Manifestations of Huntington's Disease. Mov Dis 20(3):293-297. 2005. |
Journal Article |
Huntington Study Group PHAROS Investigators (Shoulson I, primary author). At risk for Huntington's disease: The PHAROS (Prospective Huntington at risk observational study) cohort enrolled. Archives of Neurology, 63:991-998. 2006. [PubMed] |
Journal Article |
Oster, E, Dorsey, ER, Bausch, J, Shinaman, A, Kayson, E, Oakes, D, Shoulson, I, Quaid, K. Fear of health insurance loss among individuals at risk for Huntington disease. American Journal of Medical Genetics, 146A:20702077. 2008. [PubMed] |
Journal Article |
DeCoux, V., Bruton, E. R. & GenSES Project. Genetic Education for Human Service Professionals. (2000). |
Book |
Simon CM, Klein DW, Schartz HA . Interactive multimedia consent for biobanking: a randomized trial. Genet Med, 18 (1):57-64. 2016. [Nature] | Journal Article |
Allen SC, Dixon MD, Switchenko JM, Pentz RD. . Cancer donor preferences for disposition of their biospecimens after biobank closure.. Cancer, 123 (23):4648-4652. 2017. [PubMed] | Journal Article |
Couper MP, Tourangeau R, Conrad FG, Singer E. Evaluating the Effectiveness of Visual Analog Scales: A Web Experiment. Social Science Computer Review, 24:227-245. 2006. |
Journal Article |
Singer E, Raghunathan TE, Van Hoewyk J, Couper MP, Antonucci TC. Trends in Attitudes toward Genetic Testing 1990-2004. Forthcoming in Public Opinion Quarterly. [PubMed] |
Journal Article |
Singer, E., "Public Attitudes Toward Genetic Testing." Population Research and Policy Review. 1991; 10(3): 235-255. |
Journal Article |
Singer, E., "Public Attitudes Toward Fetal Diagnosis and the Termination of Life." Social Indicators Research. 1993; 28: 117-136. |
Journal Article |
Singer, E. et al. Beliefs about Genes and Environment as Determinants of Behavioral Characteristics. Int. J. Public Opin. Res. 19, 331–353 (2007). [Oxford Journals] |
Journal Article |
Singer, E. et al. "Racial and Ethnic Variations in Knowledge and Attitudes about Genetic Testing." Genetic Test. 2004 Spring; 8(1): 31-43. [PubMed] |
Journal Article |
Skinner, D. Culture and Family Interpretations of Genetic Disorders Website. [fpg.unc.edu] |
Website |
Raspberry K, Skinner D. Experiencing the genetic body: Parents? encounters with pediatric clinical genetics. Medical Anthropology. 26:355-391. [PubMed] |
Journal Article |
Skinner, D., Schaffer, R. "Families and Genetic Diagnoses in the Genomic and Internet Age" Infants & Young Children. 2006. 19 (1): 16?24. |
Journal Article |
Schaffer, R., Kuczynski, K. & Skinner, D. Producing genetic knowledge and citizenship through the Internet: mothers, pediatric genetics, and cybermedicine. Sociol. Heal. Illn. 30, 145–159 (2008). [PubMed] |
Journal Article |
Smith, D.H., K.A. Quaid, R.B. Dworkin et al. Early Warning: Cases and Ethical Guidance for Presymptomatic Testing in Genetic Diseases. Bloomington, Indiana: Indiana University Press, 1998. 188 p. |
Book |
Quaid, K.A. and M.K. Wesson. "Exploration of the Effects of Predictive Testing for Huntington Disease on Intimate Relationships." American Journal of Medical Genetics. 1995; 57: 46-51. |
Journal Article |
Smith, E.J. and W.J. Sapp eds. Plain Talk about the Human Genome Project. Tuskegee, Alabama: Tuskegee University. 1997. |
Book |
Greenberg M, Smith RA. Support Seeking or Familial Obligation: An |
Journal Article |
Smith RA, Sillars A, Chesnut RP, Zhu X. . Investigating Married Adults' Communal Coping with Genetic Health Risk and Perceived Discrimination.. Commun Monogr, 85 (2):181-202. 2017. [PubMed] | Journal Article |
Garrett SB, Dohan D, Koenig BA. Linking Broad Consent to Biobank Governance: |
Journal Article |
Gollust, S. E., Gray, S. W., Carere, D. A., Koenig, B. A., Lehmann, L. S., Mc, G. A., . . . Roberts, J. S. (2017). Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience. Milbank Q, 95(2), 291-318. doi:10.1111/1468-0009.12262 [PubMed] |
Journal Article |
Ostergren, J. E., Hammer, R. R., Dingel, M. J., Koenig, B. A. & McCormick, J. B. Challenges in translational research: the views of addiction scientists. PLoS One 9, e93482 (2014). [PubMed] |
Journal Article |
Bowen, D. J., Albrecht, T., Hay, J., Eggly, S., Harris-Wei, J., Meischke, H., & Burke, W. (2017). Communication Among Melanoma Family Members. J Health Commun, 22(3), 198-204. doi:10.1080/10810730.2016.1259374 [PubMed] |
Journal Article |
Wolf, S. M., Branum, R., Koenig, B. A., Petersen, G. M., Berry, S. A., Beskow, L. M., . . . Wilfond, B. S. (2015). Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations. J Law Med Ethics, 43(3), 440-463. doi:10.1111/jlme.12288 [PubMed] |
Journal Article |
Garrett SB, Koenig BA, Brown A, Hult JR, Boyd EA, Dry S, Dohan D . EngageUC: Developing an Efficient and Ethical Approach to Biobanking Research at the University of California.. Clin Transl Sci, 8 (4):362-6. 2015. [ASCPT] | Journal Article |
Bowen DJ, Burke W, Hay JL, Meischke H, Harris JN. . Effects of web-based intervention on risk reduction behaviors in melanoma survivors.. J Cancer Surviv, 9 (2):279-86. 2015. [SpringerLink] | Journal Article |
Dry SM, Garrett SB, Koenig BA, Brown AF, Burgess MM, Hult JR, Longstaff H, Wilcox ES, Madrigal Contreras SK, Martinez A, Boyd EA, Dohan D . Community recommendations on biobank governance: Results from a deliberative community engagement in California.. PLoS One, 12 (2):e0172582. 2017. [PubMed] | Journal Article |
Radecki Breitkopf C, Wolf SM, Chaffee KG, Robinson ME, Lindor NM, Gordon DR, Koenig BA, Petersen GM. . Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death: Comparison of Cancer Probands, Blood Relatives, and Spouse/Partners.. J Empir Res Hum Res Ethics, 2018. [PubMed] | Journal Article |
Hazin, R. et al. Ethical, legal, and social implications of incorporating genomic information into electronic health records. Genet. Med. 15, 810–6 (2013). [PubMed] |
Journal Article |
Deverka PA, Majumder MA, Villanueva AG et al. Creating a data resource: what will it take to build a medical information commons?. Genome Med, 9 (1):84. 2017. [PubMed] | Journal Article |
Genet Med. 2018 Apr;20(5):545-553. doi: 10.1038/gim.2017.137. Epub 2017 Aug 31. |
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The Journal of Law, Medicine & Ethics First Published March 27, 2018 |
Journal Article |
Koenig, B. A. Have we asked too much of consent? Hastings Cent. Rep. 44, 33–4 [PubMed] |
Journal Article |
Last updated: January 24, 2019