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.
Wang S, Jiang X, Singh S, Marmor R, Bonomi L, Fox D, Dow M, Ohno-Machado L . Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States.. Ann N Y Acad Sci, 2016. [Wiley Online Library] | Journal Article |
Vaidya, J., et al. (2017). "A Scalable Privacy-preserving Data Generation Methodology for Exploratory Analysis." AMIA Annu Symp Proc 2017: 1695-1704. [PubMed] [PubMed] |
Journal Article |
Constable SD, Tang Y, Wang S, Jiang X, Chapin S. . Privacy-preserving GWAS analysis on federated genomic datasets.. BMC Med Inform Decis Mak, 15 (S5):s2. 2015. [BioMed Central] | Journal Article |
Zhang Y, Dai W, Jiang X, Xiong H, Wang S . FORESEE: Fully Outsourced secuRe gEnome Study basEd on homomorphic Encryption.. BMC Med Inform Decis Mak, 15 (S5): 2015. [BioMed Central] | Journal Article |
Raisaro, J. L., et al. (2017). "Addressing Beacon re-identification attacks: quantification and mitigation of privacy risks." J Am Med Inform Assoc 24(4): 799-805. [PubMed] [PubMed] |
Journal Article |
Chen F, Wang C, Dai W, Jiang X, Mohammed N, Al Aziz MM, Sadat MN, Sahinalp C, Lauter K, Wang S. . PRESAGE: PRivacy-preserving gEnetic testing via SoftwAre Guard Extension.. BMC Med Genomics, 10 (S2):48. 2017. [PubMed] | Journal Article |
Bioinformatics. 2017 Dec 1;33(23):3716-3725. doi: 10.1093/bioinformatics/btx470. |
Journal Article |
Wang S, Zhang Y, Dai W, Lauter K, Kim M, Tang Y, Xiong H, Jiang X . HEALER: homomorphic computation of ExAct Logistic rEgRession for secure rare disease variants analysis in GWAS. Bioinformatics, 32 (2):211-8. 2016. [Oxford Journals] | Journal Article |
Wang Chenghong, Yichen Jiang, Noman Mohammed, Feng Chen, Xiaoqian Jiang, Md Momin Al Aziz, Md Nazmus Sadat, and Shuang Wang . SCOTCH: Secure Counting Of encrypTed genomiC data using a Hybrid approach. AMIA Annu Symp Proc., 2017. [PubMed] (AMIA Annu Symp Proc. 2017; 2017: 1744–1753.) | Journal Article |
Wang, C., Gordon, E. S., Norkunas, T., Wawak, L., Liu, C. T., Winter, M., . . . Bowen, D. J. (2016). A randomized trial Examining The Impact Of Communicating Genetic And Lifestyle Risks For Obesity. Obesity (Silver Spring), 24(12), 2481-2490. doi:10.1002/oby.21661 [PubMed] |
Journal Article |
Rubel MA, Werner-Lin A, Barg FK, Bernhardt BA. . Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results.. Cult Med Psychiatry, 41 (3):382-406. 2017. [PubMed] | Journal Article |
Wasserman, D. "Research into Genetics and Crime: Consensus and Controversy." Politics and the Life Sciences. March 1996: 15(1); 107-109. |
Journal Article |
Wasserman, D., Bickenbach, J., Wachbroit, R., eds., Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability.. New York, New York: Cambridge University Press, 2005. 273 p. |
Book |
Wasserman, D., Strudler, A. "Can a Nonconsequentialist Count Lives." Philosophy & Public Affairs. 2003; 31(1):71-94. |
Journal Article |
Wasserman David; Roberts, Melinda . Harming Future Persons: Ethics, Genetics and the Nonidentity Problem. 2009. | Book |
Beskow, L. M., Dombeck, C. B., Thompson, C. P., Watson-Ormond, J. K. & Weinfurt, K. P. Informed consent for biobanking: consensus-based guidelines for adequate comprehension. Genet. Med. 17, 226–233 (2014). [PubMed] |
Journal Article |
Beskow LM, Lin L, Dombeck CB, Gao E, Weinfurt KP. . Improving biobank consent comprehension: a national randomized survey to assess the effect of a simplified form and review/retest intervention.. genet Med, 19 (5):505-12. 2017. [PubMed] | Journal Article |
Wertz, D.C. "Society and the Not-so-New Genetics: What Are We Afraid of? Some Future Predictions From a Social Scientist." The Journal of Contemporary Health Law and Policy. 1997; 13: 299-346. |
Journal Article |
Wertz, D.C. and J.C. Fletcher. "Ethical and Social Issues in Prenatal Sex Selection: A Survey on Geneticists in 37 Nations." Soc Sci Med 1998; 46(2): 255-273. [PubMed] |
Journal Article |
Wertz, D.C. "Genetic Counseling in Mexico." American Journal of Medical Genetics. [Editorial Comment] 1998; 75: 424-425. [PubMed] |
Journal Article |
Wertz, D.C. "Eugenics Is Alive and Well: A Survey of Genetic Professionals around the World." Science in Context. 1998; 11(3-4): 100-109. |
Journal Article |
Wertz DC . Views of Chinese medical geneticists: how they differ from 35 other nations. Hamburg, Germany: Hamburg: Institut fur Asienkunde 141-160. 2000. | Book |
Wertz D.C. "Emerging Risks of Genetic Testing." Risk Management Foundation of the Harvard Medical Institutions Forum. Summer; 2000: 8-9. |
Journal Article |
Wertz D.C. "Testing Children and Adolescents." in A Companion to Genethics. J. Burley and J. Harris. (eds.) Malden, Massachusetts: Blackwell Publishers, 2002. 92-113. |
Book Chapter |
Wertz, D.C. "Is There a Women's 'Ethic' in Genetics: A 37-Nation Survey of Providers." JAMWA Winter 1997; 52(1): 33-38. |
Journal Article |
Wertz, D.C. "International Perspectives on Privacy and Access to Genetic Information." Microbial & Comparative Genomics. 1997; 2(1): 53-61. |
Journal Article |
Cohen, P.E., D.C. Wertz, I. Nippert and G. Wolff. "Genetic Counseling Practices in Germany: A Comparison Between East German and West German Geneticists." Journal of Genetic Counseling. 1997; 6(1): 61-80. |
Journal Article |
Wertz, D.C. "International Research in Bioethics: The Challenges of Cross-Cultural Interpretation." In: Bioethics and Society, eds. R. DeVries and J. Subedi. Upper Saddle River, New Jersey: Prentice Hall, 1998. |
Book Chapter |
Mao, X. and D.C. Wertz. "China's Genetic Services Providers' Attitudes Towards Several Ethical Issues: A Cross-Cultural Survey." Clinical Genetics. 1997; 52: 100-109. |
Journal Article |
Wertz, D.C. "International Perspectives." In: The Genetic Testing of Children, A.J. Clark, Ed. Oxford: BIOS Scientific Publishers, 1998. |
Book Chapter |
Lisker, R., A. Carnevale, J.A. Villa, S. Armendares and D.C. Wertz. "Mexican geneticists' opinions on disclosure issues." Clinical Genetics. 1998; 54: 321-329. |
Journal Article |
Wertz, D.C. "Patients' and Professionals' Views on Autonomy, Disability, and "Discrimination": Results of a 36-Nation Survey." In: The Commercialization of Genetic Research, eds. B. Williams-Jones and T. Caulfield. NewYork: Plenum Press, 1999. |
Book Chapter |
Wertz D., Fletcher J., Nippert I., Wolff G., Ayme S. "Has Patient Autonomy Gone too Far? Geneticists' Views in 36 Nations." The American Journal of Bioethics. 2002; 2(4) In Focus. [PubMed] |
Journal Article |
Wertz D.C., Knoppers B.M. "Serious Genetic Disorders: Can or Should They Be Defined?" American Journal of Medical Genetics. 108: 29-35 (2002) |
Journal Article |
Wertz, D.C. and J.C. Fletcher. "Geneticists Approach Ethics: An International Survey." Clinical Genetics. 1993: 43(2); 104-110.Georgetown University Press. 2000: 261-287. [PubMed] |
Journal Article |
Wertz, D.C. and J.C. Fletcher. "Proposed: An International Code of Ethics for Medical Genetics." Clinical Genetics. 1993: 44(1); 37-43. |
Journal Article |
Wertz, D.C. "Opinions des geneticiens de 37 pays sur la preselection du sexe." Sociologie et societes. Autumn 1996; XXVIII(2): 77-92. |
Journal Article |
Wertz, D.C. "Ethical and Legal Implications of the New Genetics: Issues for Discussion." Social Science and Medicine. 1992; 35(4): 495-505. |
Journal Article |
Wertz, D.C. "Provider Biases and Choices: The Role of Gender." Clinical Obstetrics and Gynecology. September 1993; 36(3): 521-531. |
Journal Article |
Wertz, D.C. and J.C. Fletcher. "Feminist Criticism of Prenatal Diagnosis: A Response." Clinical Obstetrics and Gynecology. September 1993; 36(3): 541-567. [PubMed] |
Journal Article |
Wertz, D.C. et al. "Genetic Testing for Children and Adolescents: Who Decides?" JAMA. September 1994; 272(11): 875-881. [PubMed] |
Journal Article |
Wertz, D.C. "Professional Perspectives: A Survey of Canadian Providers." Health Law Journal. 1995; 3: 59-130. |
Journal Article |
Wertz, D.C. "The Difficulties of Recruiting Minorities to Studies of Ethics and Values in Genetics." Community Genetics. 1998; 1: 175-179. |
Journal Article |
Wertz, D.C. "Genetic Discrimination: Results of a Survey of Genetics Professionals, Primary Care Physicians, Patients, and Public." Health Law Review. 1999; 7(3): 7-8. |
Journal Article |
Wertz, D.C. "Drawing Lines: Notes for Policymakers." In: Parens, E., Asch, A., eds. Prenatal Testing and Disability. Washington, DC: Georgetown University Press. 2000: 261-287. |
Book Chapter |
Wertz, D.C. "Ethics." In: Pediatric Neuropathology, S. Duckett, Ed. Baltimore: Williams & Wilkins, 1995. |
Book Chapter |
Wertz, D.C. and J.C. Fletcher. "A Critique of Some Feminist Challenges to Prenatal Diagnosis." Journal of Women's Health. 1993; 2(2): 173-188. [Full Text] |
Journal Article |
Wertz, D.C. "Provider Gender and Moral Reasoning: The Politics of an Ethics of Care." Journal of Genetic Counseling. 1994; 3(2): 95-112. |
Journal Article |
Wertz, D.C. et al. "Testing Healthy Children and Adolescents; Recommendations for Avoiding Harm." The Genetic Resource. 1994; 8(2): 16-20. |
Journal Article |
Wertz, D.C. and P.R. Reilly. "Laboratory Policies and Practices for the Genetic Testing of Children: A Survey of the Helix Network." American Journal of Human Genetics. 1997; 61: 1163-1168. |
Journal Article |
Wertz, D.C. "Ethical Issues in Pediatric Genetics: Views of Geneticists, Parents, and Primary Care Physicians." Health Law Journal. 1998; 6: 1-42. |
Journal Article |
Wertz, D.C. "Patient and Professional Views on Autonomy: A Survey in the United States and Canada." Health Law Review. 1999; 7(3): 9-10. |
Journal Article |
Capron, A. "Human Genome Research in an Interdependent World." Kennedy Institute of Ethics Journal. September 1991. (Consensus Report including a proposal for Coordination of International ELSI issues by HUGO.) [PubMed] |
Journal Article |
Wilkes, Michael S; Day, Frank C; Fancher, Tonya L; McDermott, Haley; Bell, Robert A; Green, Michael J . Increasing confidence and changing behaviors in primary care providers engaged in genetic counselling.. BMC Medical Education, 17 (1):163. 2017. [PubMed] | Journal Article |
Biotechnology and the Diagnosis of Genetic Disease: Forum on the Technical, Regulatory and Societal Issues. Final Report. Washington, DC: Georgetown University Medical Center, August 1991. (Consensus Report on FDA's role in regulation of genetic technology.) |
Journal Article |
Siddiki, H, Fletcher, JG, McFarland, B. et al. Incidental Findings in CT Colonography: Literature Review and Survey of Current Research Practice. The Journal of Law, Medicine, and Ethics, 36(2):320-331. 2008. [PubMed] |
Journal Article |
Wilfond, BS, Capenter, KJ. Incidental Findings in Pediatric Research. The Journal of Law, Medicine, and Ethics, 36(2):332-340. 2008. [PubMed] |
Journal Article |
Milstein, AC. Research Malpractice and the Issue of Incidental Findings. The Journal of Law, Medicine, and Ethics, 36(2):356-360. 2008. [PubMed] |
Journal Article |
Nelson, CA. Incidental Findings in Magnetic Resonance Imaging (MRI) Brain Research. The Journal of Law, Medicine, and Ethics 36(2):315-319. 2008. [PubMed Central] |
Journal Article |
Wolf, SM, Lawrenz, FP, Nelson, CA, et al. Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations. The Journal of Law, Medicine, and Ethics, 36(2):219-248. 2008. [PubMed] |
Journal Article |
Parker, LS. The Future of Incidental Findings: Should They be Viewed as Benefits? The Journal of Law, Medicine, and Ethics, 36(2):341-351. 2008. [PubMed] |
Journal Article |
Fabsitz, RR, McGuire, A, Sharp Richard R, et. al. Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants: Updated Guidelines From a National Heart, Lung, and Blood Institute Working Group. Circulation-Cardiovascular Genetics, 3(6):574-580. 2010. [PubMed] |
Journal Article |
Miller, FG, Mello, MM, Joffe S. Incidental Findings in Human Subjects Research: What Do Investigators Owe Research Participants? The Journal of Law, Medicine, and Ethics 36(2):271-279. 2008. [PubMed Central] |
Journal Article |
Illes, J, Chin, VN. Bridging Philosophical and Practical Implications of Incidental Findings in Brain Research. The Journal of Law, Medicine, and Ethics 36(2):298-304. 2008. [PubMed Central] |
Journal Article |
Wolf, SM, Paradise, J, Caga-anan C. The Law of Incidental Findings in Human Subjects Research: Establishing Researchers' Duties. The Journal of Law, Medicine, and Ethics 36(2):361-383. 2008. [PubMed] |
Journal Article |
Orme, NM, Fletcher, JG, Siddiki, HA, et al. Incidental Findings in Imaging Research Evaluating Incidence, Benefit, and Burden. Archives of Internal Medicine, 170(17):1525-1532. 2010. [PubMed] |
Journal Article |
Wolf, SM, Paradise, J, Nelson, CA, Kahn, JP, Lawrenz, F. eds. Symposium: Incidental Findings in Human Subjects Research: From Imaging to Genomics. The Journal of Law, Medicine & Ethics 36(2):209-435. 2008. |
Journal Article |
Wolf, SM. Introduction: The Challenge of Incidental Findings. The Journal of Law, Medicine, and Ethics, 36(2):216-218. 2008. [PubMed] |
Journal Article |
Lawrenz, F, Sobotka, S. Empirical Analysis of Current Approaches to Incidental Findings. The Journal of Law, Medicine, and Ethics, 36(2):249-255. 2008. [PubMed Central] |
Journal Article |
Richardson, HS. Incidental Findings and Ancillary-Care Obligations. The Journal of Law, Medicine, and Ethics 36(2):256-270. 2008. [PubMed] |
Journal Article |
Cho, MK. Understanding Incidental Findings in the Context of Genetics and Genomics. The Journal of Law, Medicine, and Ethics, 36(2):280-285. 2008. [PubMed Central] |
Journal Article |
Van Ness, B. Genomic Research and Incidental Findings. The Journal of Law, Medicine, and Ethics, 36(2):292-297. 2008. [PubMed] |
Journal Article |
Marchant G, Lindor R. Prudent Precaution in Clinical Trials of Nanomedicines. J Law Med Ethics. 40(4) 831-840. https://doi.org/10.1111/j.1748-720X.2012.00711.x [SAGE Journals] |
Journal Article |
Resnik DB. Responsible conduct in nanomedicine research: environmental concerns beyond the common rule. J Law Med Ethics. 2012;40(4):848-55. [PMC] |
Journal Article |
Kimmelman, J. Beyond Human Subjects: Risk, Ethics, and Clinical Development of Nanomedicines. J Law Med Ethics. 40(4):841-847.https://doi.org/10.1111/j.1748-720X.2012.00712.x [SAGE Journals] |
Journal Article |
King, NM. Nanomedicine first-in-human research: challenges for informed consent. J Law Med Ethics. 40(4):823-830.10.1111/j.1748-720X.2012.00710.x [SAGE Journals] |
Journal Article |
Ramachandran G, Howard J, Maynard A, et al. Handling Worker and Third-Party Exposures to Nanotherapeutics during Clinical Trials. J Law Med Ethics. 40(4): 856-864. https://doi.org/10.1111/j.1748-720X.2012.00714.x [SAGE Journals] |
Journal Article |
Holm, I. A. & Taylor, P. L. The Informed Cohort Oversight Board: From Values to Architecture. Minnesota J. Law, Sci. Technol. 13, 669–690 (2012). [PubMed Central] |
Journal Article |
Krier, J. B. & Green, R. C. Management of incidental findings in clinical genomic sequencing. Curr. Protoc. Hum. Genet. Chapter 9, 77:9.23.1–9.23.13. (2013). [PubMed Central] |
Journal Article |
McGuire, A. L. et al. Point-counterpoint. Ethics and genomic incidental findings. Science (80-. ). 340, 1047–8 (2013). [PubMed] |
Journal Article |
Ginsburg G, Willard H Eds. Genomic and Personalized Medicine, Vol. 1. Waltham, MA: Academic Press 102-22. 2013. | Book |
Nelson SC, Yu JH, Ceccarelli L . How Metaphors About the Genome Constrain CRISPR Metaphors: Separating the "Text" From Its "Editor". Am J Bioeth, 15 (12):60-2. 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 |
Committee on DNA Technology in Forensic Science . DNA Technology in Forensic Science. Washington, DC: National Academy Press 185p. 1992. | Book |
"The Human Genome Project: A Choices and Challenges Forum." Blacksburg, Virginia: Virginia Polytechnic Institute, April 1992. (Transcript and Videotape of Plenary session) |
Journal Article |
Last updated: January 24, 2019