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.
Dressler L, Juengst E. Thresholds and boundaries in the disclosure of individual genetic research results. American Journal of Bioethics, 6:18-20. 2006. [PubMed] |
Journal Article |
Marshall P. Ethical Issues in Research Design and Informed Consent to Biomedical and Social Research in Resource Poor Settings. Geneva: World Health Organization, Special Topics in Social, Economic, and Behavioral Research Series of Programme for Research and Training in Tropical Diseases (TDR), 2007. |
Book Chapter |
Davis D. A Thoughtful Look at Disability. Hastings Center Report, 54-55(2). 2007. |
Journal Article |
Dressler L. Control and Use of Banked Human Specimens in Research. Biospecimen |
Journal Article |
Juengst ET. "FACE facts: Why human genetics will always provoke bioethics." J Law Med Ethics 2004; 32(2):267-75, 191. [PubMed] |
Journal Article |
Liu, Y. I., Wise, P. H. & Butte, A. J. The “etiome”: identification and clustering of human disease etiological factors. BMC Bioinformatics 10 Suppl 2, S14 (2009). [PubMed Central] |
Journal Article |
Hoffman S. "In There a Place for 'Race' as a Legal Concept?" Arizona State Law Journal. 2004; 36(4): 1093-1159. |
Journal Article |
Davis, D.S. "Genetic Research & Communal Narratives." Hastings Center Report. 2004; 34(4):40-49. [PubMed] |
Journal Article |
Mehlman, M.J. "Genetic Enhancement: Plan Now to Act Later." Kennedy Institute of Ethics Journal. 2005; 15(1): 77-82. [PubMed] |
Journal Article |
Settersten, R. A., Flatt, M. A. & Ponsaran, R. S. From the Lab to the Front Line: How Individual Biogerontologists Navigate their Contested Field. J. Aging Stud. 22, 304–312 (2008). [PubMed] |
Journal Article |
Allyse M, Karkazis K, Lee S et al. Informational risk, institutional review, and autonomy in the proposed changes to the common rule. IRB, 34 (3):17-9. 2012. [PubMed] | Journal Article |
Dressler LG. Control and use of banked human specimens in research. Biospecimen ownership. Counterpoint. Journal of Cancer Epidemiology, Prevention and Biomarkers, 16(2):190-191. 2007. [PubMed] |
Journal Article |
Cadigan, R. J. et al. Neglected ethical issues in biobank management: Results from a U.S. study. Life Sci. Soc. policy 9, 1 (2013). [PMC] |
Journal Article |
Juengst, E.T. "What Does Enhancement Mean?" p. 29-47, in Enhancing Human Traits: Ethical and Social Implications, E. Parens, Ed. Washington, DC: Georgetown University Press, 1998. |
Book Chapter |
Wolf, S. M. & Kahn, J. P. Genetic testing and the future of disability insurance: ethics, law & policy. J. Law, Med. Ethics 35, 6–32 (2007). [PubMed] |
Journal Article |
Kahn J. Genes, Race, and Population: Avoiding a Collision of Categories. American Journal of Public Health, 96(11):1965-70. 2006 [PubMed] |
Journal Article |
Thiel, D. B. et al. Testing an online, dynamic consent portal for large population biobank research. Public Health Genomics 18, 26–39 (2015). [PubMed] |
Journal Article |
Karjala, D.S. "A Legal Research Agenda for the Human Genome Initiative." Jurimetrics. 1992: (Special Issue: The Human Genome Initiative) 32(2); 121-311. [PubMed] |
Journal Article |
Deverka, P. A., Kaufman, D. & McGuire, A. L. Overcoming the reimbursement barriers for clinical sequencing. JAMA 312, 1857–8 (2014). [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 |
Cook-Deegan R, Chandrasekharan S . Patents and genome-wide DNA sequence analysis: is it safe to go into the human genome?. J Law Med Ethics, 42 (S1):42-50. 2014. [SAGE] | Journal Article |
Deverka PA, Dreyfus JC . Clinical integration of next generation sequencing: coverage and reimbursement challenges.. J Law Med Ethics, 42 (S1):22-41. 2016. [SAGE] | Journal Article |
Javitt GH, Carner KS . Regulation of next generation sequencing. J Law Med Ethics, 42 (S1):9-21. 2014. [SAGE] | Journal Article |
Kaufman D, Curnutte M, McGuire AL . Clinical integration of next generation sequencing: a policy analysis.. J Law Med Ethics, 42 (S1):5-8. 2014. [SAGE] | Journal Article |
Guerrini CJ, McGuire AL, Majumder MA. . Myriad take two: Can genomic databases remain secret?. Science, 356 (6338):586-587. 2017. [PubMed] | Journal Article |
Curnutte MA, Frumovitz KL, Bollinger JM, Cook-Deegan RM, McGuire AL, Majumder MA. . Developing context-specific next-generation sequencing policy.. Nat Biotechnol, 34 (5):466-70. 2016. [PubMed] | Journal Article |
Curnutte, M. A., Frumovitz, K. L., Bollinger, J. M., McGuire, A. L. & Kaufman, D. J. Development of the clinical next-generation sequencing industry in a shifting policy climate. Nat. Biotechnol. 32, 980–2 (2014). [PubMed] |
Journal Article |
Kay, L.E. Who Wrote the Book of Life? A History of the Genetic Code. Stanford University Press, February 2000. |
Book |
Keleher, C.A. "Translating the Genetic Library: The Goals, Methods, and Applications of the Human Genome Project." Bulletin of the Medical Library Association. 1993: 81: 274-277. [PubMed] |
Journal Article |
Kelly, S. E. “New” genetics meets the old underclass: Findings from a study of genetic outreach services in rural Kentucky. Crit. Public Health 12, 169–186 (2002). [Full Text] |
Journal Article |
Kelly SE. "A different light - Examining, impairment through parent narratives of childhood disability." Journal of Contemporary Ethnography. APR 2005; 34 (2): 180-205 |
Journal Article |
Kelly SE. "Bioethics and rural health: theorizing place, space, and subjects." Social Science & Medicine. June 2003; 56 (11): 2277-2288. [PubMed] |
Journal Article |
Kevles, D.J. "Social and Ethical Issues in the Human Genome Project." Phi Kappa Phi Journal (National Forum). Spring 1993; 73: 18-21. |
Journal Article |
Kevles, D.J. and L. Hood, eds. The Code of Codes: Scientific and Social Issues in the Human Genome Project. Cambridge: Harvard University Press, 1992. 397p. |
Book |
Gesteland R.F. "Exploring genetic technology." video review. Judicature. May-June 2003; 86(6): 320-321. [Full Text] |
Journal Article |
Ginther, C.; L. Issel-Tarver; and M.C. King. "Identifying Individuals by Sequencing Mitochondrial DNA from Teeth." Nature Genetics. October 1992; 2: 135-138. |
Journal Article |
King, M.C. "An Application of DNA Sequencing to a Human Rights Problem." In: Molecular Genetic Medicine, Friedman, Ed. 1991: 117-131. [PubMed] |
Journal Article |
Baty BJ, Dudley WN, Musters A, Kinney AY. Uncertainty in BRCA1 cancer susceptibility testing. Am J Med Genet Part C Semin Med Genet, 142(4):241-50. 2006. [PubMed] |
Journal Article |
Kinney, A.Y., Croyle, R.A., Dudley, W.N., Neuhausen, S., Pelias, M.K., & Bailey, C. "Knowledge and attitudes toward genetic testing among a large African American kindred with a BRCA1 mutation." Preventive Medicine. 2001; 33: 543-551. |
Journal Article |
Baty, B.J., Kinney, A.Y., Simonsen, S., & Wiley, A. "Developing culturally sensitive cancer genetics communication aids for African-Americans." American Journal of Medical Genetics. 2003; 118: 146-155. |
Journal Article |
Kinney, A.Y., Emery, G., Dudley, W.N., & Croyle, R.T. "Screening behaviors among African American women at high risk for breast cancer: Do beliefs about God matter?" Oncology Nursing Forum. 2002; 29: 835-843. |
Journal Article |
BRCA Team. (2001). Family health study. Salt Lake City, UT: Color Transfer. (Culturally targeted BRCA1 testing educational pamphlet). |
Journal Article |
Baty, B.J., Kinney, A.Y., Dudley, W., Marshall, E. "Uncertainty in a family at high risk for a BRCA1 mutation." Journal of Genetic Counseling. 2002; 11: 470-471. |
Journal Article |
Cancer. 2005 Dec 1;104(11):2508-16. [PubMed] |
Journal Article |
J Genet Couns. 2006 Aug;15(4):293-305. [PubMed] |
Journal Article |
Kinney, A. Y., et al. (2006). "Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred." Am J Med Genet A 140(8): 813-826. [PubMed] [PubMed] |
Journal Article |
Krosin, M, Klitzman, R, Levin, B, Cheng, J, Ranney, ML. Problems in comprehension of informed consent in rural and peri-urban Mali, West Africa. Clinical Trials, 3(3):306-313. 2006. [PubMed] |
Journal Article |
Klitzman, R. Views of the process and content of ethical reviews of HIV vaccine trials among members of US Institutional Review Boards and South African Research Ethics Committees. Developing |
Journal Article |
Klitzman, R, Albala, I, Siragusa, J, Appelbaum, P. The reporting of compensation and risks on |
Journal Article |
Appelbaum, P, Lidz, C, and Klitzman, R. Voluntariness of Consent to Research: A Conceptual Model. |
Journal Article |
Klitzman, R. Complications of culture in obtaining informed consent. American Journal of Bioethics |
Journal Article |
Klitzman, R. Qualifying confidentiality: Historical and empirical issues and facts. American Journal of |
Journal Article |
Klitzman, R, Zolovska, B, Folberth, W, Chung, W, Sauer, M, Appelbaum, P. Pre-implantation Genetic Diagnosis: Ethics, Risks and Benefits. Fertility and Sterility, 92(4):1276-1283. 2008. |
Journal Article |
Klitzman, R, Appelbaum, P, and Chung, W. Anticipating issues related to increasing Pre-implantation genetic diagnosis use: A research agenda. Reproductive Biomedicine, 17(1):33-42. 2008. [PubMed] |
Journal Article |
Klitzman, R. Views of discrimination among individuals confronting genetic disease. J. Genet. Couns. 19, 68–83 (2010). [PMC] |
Journal Article |
Klitzman, R. L., Kleinert, K., Rifai-Bashjawish, H. & Leu, C. S. The reporting of IRB review in journal articles presenting HIV research conducted in the developing world. Dev. World Bioeth. 11, 161–9 (2011). [PMC] |
Journal Article |
Klitzman, R, Siragusa, J, Albala, I, Appelbaum, P. The reporting of monetary compensation in research articles. |
Journal Article |
Appelbaum, P, Lidz, C, Klitzman, R. Voluntariness of Consent to Research: A Preliminary Empirical |
Journal Article |
Klitzman, R. Questions, complexities, and limitations in disclosing individual genetic test results. |
Journal Article |
Klitzman, R. Additional implications of a national survey on ethics consultation in U.S. hospitals. |
Journal Article |
Klitzman, R. & Sauer, M. V. Payment of egg donors in stem cell research in the USA. Reprod. Biomed. Online 18, 603–8 (2009). [PMC] |
Journal Article |
Fisher, C. E., Chin, L. & Klitzman, R. Defining Neuromarketing: Practices and Professional Challenges. Harv. Rev. Psychiatry 18, 230–237 (2010). [PMC] |
Journal Article |
Klitzman, R. L. How IRBs view and make decisions about social risks. J. Empir. Res. Hum. Res. Ethics 8, 58–65 (2013). [PubMed Central] |
Journal Article |
Klitzman, R. How US institutional review boards decide when researchers need to translate studies. J. Med. Ethics 40, 193–7 (2014). [PMC] |
Journal Article |
Klitzman R, Kirshenbaum S, Kittel L, et al. Intricacies and Inter-relationships Between HIV Disclosure and HAART: A Qualitative Study. AIDS Care, 16(5):628-640, 2004. [PubMed] |
Journal Article |
Klitzman R, Kirshenbaum SB, Kittel L, Morin SF, Daya S, Mastrogiacomo M, Rotheram-Borus, MJ. Naming Names: Perceptions of Name-Based HIV Reporting, Partner Notification, and Criminalization of Non-disclosure Among Persons Living With HIV. Sexuality Research and Social Policy, 1(3):38-57. 2004. [Full Text] |
Journal Article |
Klitzman R, Bayer R. Mortal Secrets: Truth and Lies in the Age of AIDS. Johns Hopkins University Press. Paperback edition. 2005. |
Book |
Knoppers, B.M., C.M. Laberge and M. Hirtle, eds. Human DNA: Law and Policy. The Hague, The Netherlands: Kluwer Law International, 1997. |
Book |
Kuppermann, M. et al. Preferences of women facing a prenatal diagnostic choice: long-term outcomes matter most. Prenat. Diagn. 19, 711–6 (1999). [PubMed] |
Journal Article |
Kuppermann, M., E. Gates, A.E. Washington. "Racial/Ethnic Differences in Prenatal Diagnostic Test Use and Outcomes: Preferences, Socioeconomics or Patient Knowledge?" Obstetrics and Gynecology. 1996; 87: 675-82. |
Journal Article |
Korngiebel DM, West KM, Burke W. . Clinician-Stakeholders' Perspectives on Using Patient Portals to Return Lynch Syndrome Screening Results.. J Genet Couns, 27 (2):349-357. 2018. [PubMed] | Journal Article |
Korngiebel DM, Thummel KE, Burke W. . Implementing Precision Medicine: The Ethical Challenges.. Trends Pharmacol Sci, 381 (1):8-14. 2017. [PubMed] | Journal Article |
Kuppermann M., Feeny D., Gates E., Posner S., Blumberg B., Washington A.E. "Preferences of women facing a prenatal diagnostic choice: Long-term outcomes matter most." Prenatal Diagnosis. 1999; 19: 711-6. |
Journal Article |
Ratliff A., Angell M., Dow R.W., Kuppermann M. et al. "What is a good decision?" Effective Clinical Practice. 1999; 2: 185-97. |
Journal Article |
Kuppermann M., Nease R.F., Ackerson L.M., Black S.B., Shinefield H.R., Lieu T.A.. "Parents preferences for outcomes associated with childhood vaccinations." Pediatric Infectious Disease Journal. 2000; 12: 129-33. |
Journal Article |
Kuppermann, M., E. Gates, A.E. Washington. "Racial/Ethnic Differences in Prenatal Diagnostic Test Use and Outcomes: Preferences, Socioeconomics or Patient Knowledge?" Obstetrics and Gynecology. 1996; 87: 675-82. |
Journal Article |
Moyer A., Brown B.A., Gates E., Daniels M., Brown H.D., Kuppermann M. "Decision about prenatal testing for chromosomal disorders: Perceptions of a diverse group of pregnant women." Journal of Women's Health & Gender-Based Medicine. 1999; 8: 521-31. [PubMed] |
Journal Article |
Kupperman M., Goldberg J.D., Nease R.F., Washington A.E. "Who should be offered prenatal diagnosis? The thirty-five-year-old question." American Journal of Public Health. 1999;89:160-3. |
Journal Article |
Kuppermann M., Nease R.F., Learman L.A., Gates E., Blumberg B., Washington A.E.. "Procedure-related miscarriages and Down syndrome-affected births: Implications for prenatal testing based on women's preferences." Obstetrics and Gynecology, 2000; 96: 511-6. |
Journal Article |
Knoppers, B.M., C.M. Laberge and M. Hirtle, eds. Human DNA: Law and Policy. The Hague, The Netherlands: Kluwer Law International, 1997. |
Book |
Kuppermann, M., S. Shiboski, D. Feeny, E. Elkin, A.E. Washington. "Can Preference Scores for Discrete States be Used to Derive Preference Scores for an Entire Path of Events? An Application to Prenatal Diagnosis." Medical Decision Making. 1997; 17: 42-55. |
Journal Article |
Harris R.A., Washington AE, Feeny D, Kuppermann M. "Decision Analysis of Prenatal Testing for Chromosomal Disorders: What Do the Preferences of Pregnant Women Tell Us?" Genetic Testing. 2001; 5(1): 23-32. |
Journal Article |
Ostrove J.M., Adler N.E., Kuppermann M., Washington A.E. "Objective and subjective assessments of socioeconomic status and their relationship to self-rated health in an ethnically diverse sample of pregnant women." Health Psychology, 2000; 19:613-8. |
Journal Article |
Palincsar, L. et al. Human Genome Education Model Project Video Manual. Georgetown University Child Development Center, Washington, DC and The Alliance of Genetic Support Groups, Chevy Chase, MD. Georgetown University. 1996. |
Journal Article |
Lapham, E.V. and J.O. Weiss. "Ethical, Legal, and Social Implications of the Human Genome Project: Education of Interdisciplinary Professionals Meeting Proceedings." Human Genome Education Model Project. Georgetown University. Washington, DC. June 10, 1996. |
Journal Article |
Lapham, E.V., C. Kozma and J.O. Weiss. "Genetic Discrimination: Perspectives of Consumers." Science, 25 October 1996; 274: 621-624. |
Journal Article |
Kozma, C. and E.V. Lapham. "Nature: Understanding Genetic and Hereditary Influence on Brain Function." Lesson 3 in Nueroscience & Occupation: Links to Practice. C.B. Royeen, Ed. |
Book Chapter |
Lapham E.V., Kozma C., Weiss J.O., Benkendorf J.L., Wilson M.A. "The Gap Between Practice and Genetics Education of Health Professionals: HuGEM Survey Results." Genetics in Medicine. July/August 2000; 2(4): 1-6. |
Journal Article |
The HuGEM Project. Georgetown University Child Development Center, Washington, DC and The Alliance of Genetic Support Groups, Chevy Chase, MD. (Six videos: titles listed below) "The HuGEM Project: Overview of the Human Genome Project and Its Ethical, Legal and Social Issues." (19 minutes) |
Video |
Mol Psychiatry. 2018 Jan;23(1):15-23. doi: 10.1038/mp.2017.228. Epub 2017 Nov 21. [PubMed Access] |
Journal Article |
Brannan C, Foulkes AL, Lázaro-Muñoz G. . Preventing discrimination based on psychiatric risk biomarkers.. Am J Med Genet B Neuropsychiatr Genet, 2018. [PubMed] | Journal Article |
Lea, Dale and J. Jenkins. Genetics in Clinical Practice: New Dimensions for Nursing and Health Care. Boston: Jones & Bartlett Publishers, 1998. 352p. |
Book |
Lee, S. S.-J. Biobanks of a ‘racial kind’: mining for difference in the new genetics. Patterns of Prejudice. Patterns Prejudice 40, 443–460 (2006). [Taylor & Francis Online] |
Journal Article |
Lee, SS, Bolnick, DB, Duster,T, Ossorio, P, and Tallbear, K. The Illusive Gold Standard in Genetic Ancestry Testing. Science, 325:38-39. 2009. [PubMed] |
Journal Article |
Lee, SS. Response to: The implications of population admixture in race-based drug prescription. Clinical Pharmacology and Therapeutics, 82(6):760. 2007. |
Journal Article |
Lee, SS. Racializing Drug Design: Pharmacogenomics and Implications for Health Disparities. American Journal of Public Health, 95(12):2133-2138. 2005. [PubMed] |
Journal Article |
Lee, SS. Personalized medicine and pharmacogenomics: ethical and social challenges. Personalized Med., 2(1):29-35. 2005. |
Journal Article |
Caulfield, T, Fullerton, SM, Ali-Khan, SE, Arbour, L, Burchard, EG, Cooper, RS, Hardy, BJ, 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, and Daar, AS. Race and Ancestry in Biomedical Research: Exploring the Challenges. Genome Medicine, 1(1):8.1-8.7. 2009. [PubMed Central] |
Journal Article |
Lee, S.S. "Paradoxes of Difference." Book Review/Science in the Media. PLOS Biology. 2004; 2(9): e263. [PubMed Central] |
Journal Article |
Last updated: January 24, 2019