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.
Ostergren, J. E., Dingel, M. J., McCormick, J. B. & Koenig, B. A. Unwarranted Optimism in Media Portrayals of Genetic Research on Addiction Overshadows Critical Ethical and Social Concerns. J. Health Commun. 20, 1–11 (2015). [PubMed] |
Journal Article |
Sorenson, J.R. et al. "Proband and Parent Assistance in Identifying Relatives for Cystic Fibrosis Carrier Testing." American Journal of Medical Genetics. 1996; 63(3): 419-425. |
Journal Article |
Sorenson, J.R. et al. "Acceptance of Home and Genetic Clinic Cystic Fibrosis Carrier Education and Testing by First, Second, and Third Degree Relatives of CF Patients." American Journal of Medical Genetics May 1997; 70(2): 121-129. |
Journal Article |
Newman JE, Sorenson JR, DeVellis BM, Cheuvront B. "Gender differences in psychosocial reactions to cystic fibrosis carrier testing." American Journal of Medical Genetics. NOV 22 2002; 113 (2): 151-157. |
Journal Article |
Genetic Counseling for CF Carriers. Parts I & II. (An educational videotape to be used in conjunction with genetic counseling on cystic fibrosis testing.) Chapel Hill: University of North Carolina, 1992. |
Video |
Sorenson, J.R. and B. Cheuvront. "The Human Genome Project and Health Behavior and Health Education Research." Health Education Research. 1993; 8(4): 589-593. [PubMed] |
Journal Article |
Callanan, N.P. et al. "CF Carrier Testing: Experience of Relatives." Journal of Genetic Counseling. 1995; 4(2): 83-95. |
Journal Article |
Callanan N.P., Cheuvront B.J., Sorenson J.R. "CF Carrier testing in a high risk population: Anxiety, risk perceptions, and reproductive plans of carrier by "non-carrier" couples." Genetics in Medicine. November/December 1999; 1(7): 323-7. |
Journal Article |
Cheuvront B., Sorenson J.R., Callanan N.P. et al. "Psychosocial and educational outcomes associated with home- and clinic-based pretest education and cystic fibrosis carrier testing among a population of at-risk relatives." American Journal of Medical Genetics February 1998; 75(5): 461-468. |
Journal Article |
Sorenson JR, Jennings-Grant T, Newman J. "Communication about carrier testing within hemophilia A families." American Journal of Medical Genetics Part C-Seminars in Medical Genetics. MAY 15 2003; 119C (1): 3-1 [PubMed] |
Journal Article |
Sorenson JR, Lakon C, Spinney T, Jennings-Grant T. "Assessment of a decision aid to assist genetic testing research participants in the informed consent process." Genetic Testing. FAL 2004; 8 (3): 336-346 |
Journal Article |
Griffith, J. M., Sorenson, J. R., Jennings-Grant, T. & Fowler, B. Development of an interactive computer-assisted instruction (ICAI) program for patient prenatal genetic screening and carrier testing for use in clinical settings. Patient Educ. Couns. 59, 199–204 (2005). [PubMed] |
Journal Article |
Buchwald, D., Mendoza-Jenkins, V., Croy, C., McGough, H., Bezdek, M., Spicer, P. ?Attitudes of urban American Indians and Alaska Natives regarding participation in research.? J Gen Intern Med. 2006; 21(6): 648-51. [PubMed] |
Journal Article |
Mark Yarborough, Kelly Edwards, Paula Espinoza, Gail Geller, Alok Sarwal, Richard Sharp, Paul Spicer . Relationships Hold the Key to Trustworthy and Productive Translational Science: Recommendations for Expanding Community Engagement in Biomedical Research. Clinical and Translational Science, 6 (4):310-313. 2014. [PubMed] | Journal Article |
Yarborough M1, Edwards K, Espinoza P, Geller G, Sarwal A, Sharp R, Spicer P. . Relationships hold the key to trustworthy and productive translational science: recommendations for expanding community engagement in biomedical research. Clin Trans Sci, 6 (4):310-3. 2013. [] | Journal Article |
Human Microbiome Project Consortium. Structure, function and diversity of the healthy human microbiome. Nature 486, 207–14 (2012). [PubMed Central] |
Journal Article |
Novak NL, Lira N, O'Connor KE, Harlow SD, Kardia SLR, Stern AM. . Disproportionate Sterilization of Latinos Under California's Eugenic Sterilization Program, 1920-1945.. Am J Public Health, 108 (5):611-613. 2018. [PubMed] | Journal Article |
Novak NL, Lira N, O'Connor KE, Harlow SD, Kardia SLR, Stern AM . Disproportionate Sterilization of Latinos Under California's Eugenic Sterilization Program, 1920-1945. Am J Public Health, 108 (5):611-613. 2018. [Pubmed] | Journal Article |
Stern AM, Novak NL, Lira N, O'Connor K, Harlow S, Kardia S . California's Sterilization Survivors: An Estimate and Call for Redress. Am J Public Health, 107 (1):50-54. 2016. [Pubmed] | Journal Article |
Stowe, MJ, Turnbull, HR, Pence, R, Rack, J, Schrandt, S, Laub, L. The Importance of Attitudes Toward and Understanding of Disability and Science in the Age of Genetics. Research and Practice for Persons with Severe Disabilities, 32(3):190-206. 2007. |
Journal Article |
Stowe, M, Turnbull, R, Schrandt, M, and Rack, J. Looking to the Future: Intellectual and Developmental Disabilities in the Genetics Era. Journal on Developmental Disabilities, 13(2): 1-64. 2007. |
Journal Article |
Strong C. Minimal risk in research involving pregnant women and fetuses. J Law Med Ethics. 2011;39(3):529-38. [PMC] |
Journal Article |
Strong C. Regulatory and ethical issues for phase I in utero gene transfer studies. Hum Gene Ther. 2011;22(11):1323-30. [PMC] |
Journal Article |
Strong C. How should risks and benefits be balanced in research involving pregnant women and fetuses?. IRB. 2011;33(6):1-5. [PMC] |
Journal Article |
Strong C. Abortion decisions as inclusion and exclusion criteria in research involving pregnant women and fetuses. J Med Ethics. 2011;38(1):43-7. [PMC] |
Journal Article |
Nelson SC, Crouch JM, Bamshad MJ, Tabor HK, Yu JH. . Use of metaphors about exome and whole genome sequencing.. Am J Med Genet A, 170A (5):1127-33. 2016. [PubMed] | Journal Article |
McMillin, M. J. et al. Mutations in PIEZO2 cause Gordon syndrome, Marden-Walker syndrome, and distal arthrogryposis type 5. Am. J. Hum. Genet. 94, 734–44 (2014). [PubMed] |
Journal Article |
Chong JX, Yu JH, Lorentzen P, Park KM, Jamal SM, Tabor HK, Rauch A, Saenz MS, Boltshauser E, Patterson KE, Nickerson DA, Bamshad MJ. . Gene discovery for Mendelian conditions via social networking: de novo variants in KDM1A cause developmental delay and distinctive facial features.. Genet Med, 18 (8):788-95. 2016. [PubMed] | Journal Article |
Yu, J.-H., Jamal, S. M., Tabor, H. K. & Bamshad, M. J. Self-guided management of exome and whole-genome sequencing results: changing the results return model. Genet. Med. 15, 684–90 (2013). [PubMed] |
Journal Article |
Chong, J. X. et al. De novo mutations in NALCN cause a syndrome characterized by congenital contractures of the limbs and face, hypotonia, and developmental delay. Am. J. Hum. Genet. 96, 462–73 (2015). [PubMed] |
Journal Article |
Tabor HK, Jamal SM, Yu JH, Crouch JM, Shankar AG, Dent KM, Anderson N, Miller DA, Futral BT, Bamshad MJ . My46: a Web-based tool for self-guided management of genomic test results in research and clinical settings.. Genet Med, 2016. [Nature] | Journal Article |
Yu, J.-H., Harrell, T. M., Jamal, S. M., Tabor, H. K. & Bamshad, M. J. Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing. Am. J. Hum. Genet. 95, 77–84 (2014). [PubMed] |
Journal Article |
Henderson, G. E. et al. The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations. J. Law. Med. Ethics 42, 344–55 (2014). [PubMed] |
Journal Article |
Conference Proceedings: The Genome, Ethics, and the Law: Issues in Genetic Testing. Washington, DC: AAAS (publication Number 92-11S), 1992. 124p. |
Journal Article |
Frankel M. and A. Teich. Ethical and Legal Issues in Pedigree Research. Washington, DC: AAAS, 1993. 216p. |
Book |
Frankel, M. and A. Teich, eds. The Genetic Frontier: Ethics, Law and Policy. Washington, DC: AAAS, 1994. 240p. |
Book |
Peshkin BN, DeMarco TA, Garber JE et al. Brief Assessment of Parents? Attitudes Toward Testing Minor Children for Hereditary Breast/Ovarian Cancer Genes: Development and Validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS). Journal of Pediatric Psychology, pp. 1-12. 2008. [PubMed] |
Journal Article |
Tercyak, KP, Alford, SH, Emmons, KM, Lipkus, IM, Wilfond, BS, McBride, CM. Parents' Attitudes Toward Pediatric Genetic Testing for Common Disease Risk. Pediatrics, 127(5):288-295. 2011. [PubMed] |
Journal Article |
O'Neill, SC, Peshkin, BN, Luta, G, Abraham, A, Walker, LR, Tercyak, KP. Primary care providers' willingness to recommend BRCA1/2 testing to adolescents. Familial Cancer, 9(1):43-50. 2010. [PubMed] |
Journal Article |
Tercyak, K. P. (2009). Introduction to the special issue: psychological aspects of genomics and child health. Journal of Pediatric Psychology, 34(6), 589–95. doi:10.1093/jpepsy/jsn127 [PubMed] |
Journal Article |
Tercyak KP, Peshkin BN, Demarco TA et al. Information Needs of Mothers Regarding Communicating BRCA1/2 Cancer Genetic Test Results to Their Children. GENETIC TESTING, 11(3): 249-255. 2007. [PubMed] |
Journal Article |
DeMarco, TA, Peshkin, BN, Valdimarsdottir, HB, Patenaude, AF, Schneider, KA, Tercyak, KP. Role of Parenting Relationship Quality in Communicating about Maternal BRCA1/2 Genetic Test Results with Children. Journal of Genetic Counseling, 17:283287. 2008. [PubMed Central] |
Journal Article |
MCET. The Human Genome Project: Exploring the Human and Scientific Dimensions. (Series of 7 Videos--core of bi-weekly elective biology course). Boston: MCET. |
Video |
Blatt, R. "The Human Genome Project: Exploring the Scientific and Humanistic Dimensions." (Curriculum Materials). Boston: MCET. 2000. |
Journal Article |
Tomlinson, T., Kaplowitz, S. A. & Faulkner, M. Do people care what’s done with their biobanked samples? IRB 36, 8–15 [PubMed] |
Journal Article |
Crandall, L.A. "Health Care Reform and Payment for 'Non-Beneficial' Medical Interventions at the End of Life: Is There a Policy Solution?" pp. 123-34 in Health Care Crisis? The Search for Answers. Frederick, Maryland;University Publishing Group, 1995. |
Book Chapter |
James, D.C.S. et al., "Professional Preparation of Individuals Who Provide Genetic Counseling Services," J. Genet. Couns. 1995; 4: 49-63. |
Journal Article |
James, D.C.S. et al., "Roles of Physicians, Genetic Counselors, and Nurses in the Genetic Counseling Process," J. Fla. Med. Assoc. 1995; 82(5): 403-10. |
Journal Article |
Crandall, L.A. "Genetic Testing and Managed Care: Balancing Individual, Family, and Corporate Interests" in Resources, Rationing, and Responsibility: Ethical Issues in Managed Care (Continuing Education Conference Papers). Indianapolis; Indiana University School of Medicine, Division of Continuing Education, 1996. |
Book Chapter |
Phoenix, D.A., et al., "Sickle Cell Screening Policies as Portent: How the Human Genome Project Affects Public-Sector Genetic Services?" J. Nat Med. Assoc. November 1995; 87: 807-12. |
Journal Article |
Trottier, R.W. "Genetics In Public Health: Implications of Genetic Screening/Counseling in Rural/Culturally Diverse Populations," Chapter 13 in Technoscience and Cyberculture, S. Aronowitz, B. Martinsons, and M. Menser, Eds.. New York: Routledge Press, 1996. |
Book Chapter |
Crandall, L.A. "Biomedical Ethics: Challenges from New Technologies" in Building Bridges: Strategies for the Future, Proceedings of the 14th Annual Meeting of the Society for Healthcare Planning and Marketing. Chicago; American Hospital Association, 1992. |
Book Chapter |
Wulfsberg, E.A. et al. "Alpha-Antitrypsic Deficiency: Impact of Genetic Discovery on Medicine and Society." JAMA. 1994; 271(3): 217-222. |
Journal Article |
Wachbroit, R. "Rethinking Medical Confidentiality: The Impact of Genetics." Suffolk University Law Review. Winter 1993; 27(4): 1391-1410. |
Journal Article |
Wasserman, D. "Disability, Discrimination, and Fairness." Report from the Institute for Philosophy & Public Policy. 1993; 13: 7-12. |
Journal Article |
Hoffmann, D.E. and E.A. Wulfsberg. "Testing Children for Genetic Predispositions: Is it in Their Best Interest?" The Journal of Law, Medicine & Ethics. Winter 1995; 23(4): 331-344. |
Journal Article |
Huang, E. and J. K. Wagner (2017). "The Indefinite "Stay" on Regulatory Reforms for Research With Prisoners." Am J Bioeth 17(7): 55-57. [PubMed Central] |
Journal Article |
Turner, T. R., et al. (2018). "Ethics in biological anthropology." Am J Phys Anthropol 165(4): 939-951. [PubMed Central] |
Journal Article |
Ifekwunigwe, J. O., et al. (2017). "A Qualitative Analysis of How Anthropologists Interpret the Race Construct." Am Anthropol 119(3): 422-434. [PubMed Central] |
Journal Article |
Wagner, J. K., et al. (2017). "Anthropologists' views on race, ancestry, and genetics." Am J Phys Anthropol 162(2): 318-327. [PubMed Central] |
Journal Article |
Wagner, J. K., et al. (2017). "Precision engagement: the PMI's success will depend on more than genomes and big data." Genet Med 19(6): 620-624. [PubMed Central] |
Journal Article |
Claes, P., et al. (2014). "Modeling 3D facial shape from DNA." PLoS Genet 10(3): e1004224. [PubMed Central] |
Journal Article |
Huang, E., et al. (2017). "Barred from better medicine? Reexamining regulatory barriers to the inclusion of prisoners in research." J Law Biosci 4(1): 159-174. [PubMed Central] |
Journal Article |
Parker LS, London AJ, Aronson JD. Incidental Findings in the Use of DNA to Identify Human Remains: An Ethical Assessment. Forensic science international Genetics. 2013;7(2):221-229. doi:10.1016/j.fsigen.2012.10.002. |
Journal Article |
London, Alex; Parker, Lisa; Aronson, Jay . DNA Identification After Conflict or Disaster. Science, 341 (6151):1178-1179. 2013. [PubMed] | Journal Article |
Waisbren, S.E., Rones, M., Read, C.Y., Marsden, D., Levy, H.L. "Brief report: Predictors of parenting stress among parents of children with biochemical genetic disorders." J. Pediatr Psychol. 2004; 29(7):565-70. [PubMed] |
Journal Article |
Website: New England Consortium of Metabolic Programs |
Website |
Waisbren S.E., Albers S., Amato S. et al. "Effect of Expanded Newborn Screening for Biochemical Genetic Disorders on Child Outcomes and Parental Stress." JAMA. November 19, 2003; 290(19); 2564-2572. (Holtzman N.A. "Expanding Newborn Screening: How Good Is the Evidence?" Editorial, 2606-2608). [PubMed] |
Journal Article |
Waisbren, S.E., Levy, H.L. "Expanded screening of newborns for genetic disorders." JAMA. 2004; 18;291(7): 820-1; author reply 821. [PubMed] |
Journal Article |
Gurian, E.A., Kinnamon, D.D., Henry, J.J., Waisbren, S.E. "Expanded newborn screening for biochemical disorders: The effect of a false-positive result." Pediatrics. 2006; 117(6): 1915-21. [PubMed] |
Journal Article |
Albers S., Levy H.L. "One more thought on sudden infant death syndrome." Pediatrics 2001; 107: 809 (letter). [PubMed] |
Journal Article |
Albers S., Marsden D., Quackenbush E., Stark A.R., Levy H.L., Irons M. "Detection of neonatal CPT II deficiency by expanded newborn screening." Pediatrics 2001; 107: e103, 1-4. |
Journal Article |
Albers S., Levy H.L., Irons M. et al. "Compound heterozygosity in four asymptomatic siblings with medium-chaim acyl-CoA dehydrogenase deficiency." J Inherit Metab Dis 2001; 24: 417-8. |
Journal Article |
Walters, L. (2000). National Information Resource on Ethics & Human Genetics. |
Website |
Bioethics Information Retrieval Project. "Bioethics Thesaurus." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1994-1999, annual. |
Journal Article |
National Reference Center for Bioethics Literature The Joseph and Rose Kennedy Institute of Ethics. (2005). Bioethics Searchers Guides: Using Databases of the National Library of Medicine and National Reference Center for Bioethics Literature: Kennedy Institute of Ethics. [Georgetown Repository] |
Book |
Poland, S. C. & Bishop, L. J. Scope Note 41: Bioethics and Cloning, Part I. Kennedy Inst. Ethics J. 12, 305–324 (2002). [Project Muse] |
Journal Article |
Coutts, M.C. and P.M. McCarrick. Eugenics. Scope Note 28. Kennedy Institute of Ethics Journal. June 1995; 5(2): 163-178. [Full Text] |
Journal Article |
Durfy, S.J. and A.E. Grotevant. The Human Genome Project. Scope Note 17. Kennedy Institute of Ethics Journal. December, 1991; 1(4): 347-362. [Full Text] |
Journal Article |
McCarrick, P.M. Genetic Testing and Genetic Screening. Scope Note 22. Kennedy Institute of Ethics Journal. September 1993; 3(3): 333-354. [Full Text] |
Journal Article |
United States. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Splicing Life: a Report on the Social and Ethical Issues of Genetic Engineering with Human Beings. Washington, DC: President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1982. 126p. [Georgetown] Â |
Website |
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 21." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1995. 783p. |
Book |
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 23." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1997. 774p. |
Book |
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 25." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1999. 752p. |
Book |
Walters, L., T.J. Kahn, and D. Goldstein, eds. "Bibliography of Bioethics, Volume 29." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 2003. 737p. |
Book |
Coutts, M.C. Human Gene Therapy. Scope Note 24. Kennedy Institute of Ethics Journal. March 1994; 4(1): 68-83. [Full Text] |
Journal Article |
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 27." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 2001. 675p. |
Book |
Poland, S.C. and L.J. Bishop. "Bioethics and Cloning, Part II." Scope Note 42. Kennedy Institute of Ethics Journal. 2002 December; 12(4): 391-407. |
Journal Article |
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 26." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 2000. 740p. |
Book |
Walters, L., T.J. Kahn, and D. Goldstein, eds. "Bibliography of Bioethics, Volume 28." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 2002. 765p. |
Book |
Walters, L., T.J. Kahn, and D. Goldstein, eds. "Bibliography of Bioethics, Volume 30." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 2004. 571p. |
Book |
Bishop, L. J. & Nolen, A. L. Animals in Science and Education. Ref. Libr. 41, 57–70 (2004). [Taylor & Francis Online] |
Journal Article |
Bishop, L.J., M. Darragh, D. Goldstein, L. Huttlinger, A. Nolen. "Basic Resources in Bioethics: 1996-1999." Scope Note 37. Kennedy Institute of Ethics Journal. 2000 March; 10(1): 81-102. [Full Text] |
Journal Article |
Darragh, M. and P.M. McCarrick. "Genetics and Ethics: Selections from Updated Scope Notes." Kennedy Institute of Ethics Journal. September 1997; 7(3): 299-318. |
Journal Article |
Huttlinger, L.F., ed. "New Titles in Bioethics, 1994 to present." Quarterly and annual. From July 2003. |
Website |
Poland, S.C. "Genes, Patents, and Bioethics - Will History Repeat Itself?" Scope Note 39. Kennedy Institute of Ethics Journal. September 2000; 10(3): 265-281. [Full Text] |
Journal Article |
United States. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Screening and Counseling for Genetic Conditions: a Report on the Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Programs. Washington, DC: U.S. Government Printing Office, 1983. 122p. Full text digitized and provided at: https://bioethicsarchive.georgetown.edu/pcbe/reports/past_commissions/g… |
Website |
Walters L, Kahn TJ . Bibliography of Bioethics, Volume 22. Washington, D.C.: Kennedy Institute of Ethics, Georgetown University 761p. 1995. | Book |
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 24." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1998. 766p. |
Book |
Pressman, L., Burgess, R., Cook-Deegan, R.M., McCormack, S.J., Nami-Wolk, I., Soucy, M., Walters, L. "The licensing of DNA patents by US academic institutions: an empirical survey." Nature Biotechnology. 2006; 24(1): 31-39. [PubMed] |
Journal Article |
Last updated: January 24, 2019