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.
Katie Stoll, Amanda MacKinnon, Megan Allyse, Marsha Michie . Conflicts of interest in genetic counseling: persistent underlying questions.. Genetics in Medicine, 20 1096-1097. 2018. [Nature Article] | Journal Article |
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 |
Allyse, M. & Michie, M. Not-so-incidental findings: the ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing. Trends Biotechnol. 31, 439–41 (2013). [PubMed Central] |
Journal Article |
Michie, M. & Allyse, M. Old Questions, New Paradigms: Ethical, Legal, and Social Complications of Noninvasive Prenatal Testing. AJOB Empir. Bioeth. 6, 1–4 (2015). [PubMed] |
Journal Article |
Micklos, D., Carlson, E. "Engineering American Society: The Lesson of Eugenics." Nature Reviews. November 2000; 1: 153-158. [PubMed] |
Journal Article |
Levitt, M. L. in Priv. Confidentiality Perspect. Arch. Arch. Rec. (Behrnd-Klodt, M. L. & Wosh, P. J.) (Society of American Archivists, 2005). |
Book Chapter |
Image Archive on the American Eugenics Movement. |
Website |
Miesfeldt S., Cohn W.F., Jones S.M., et al. "Breast cancer survivors' attitudes about communication of breast cancer risk to their children." Am J Med Genet. C 119C (1): 45-50 May 15 2003 |
Journal Article |
Meisfeldt S., Jones S. Cohn W., Ropka M. "Knowledge about Breast Cancer Risk Factors and Hereditary Breast Cancer among Women with Early-Onset Breast Cancer." Familial Cancer. 1: 135-141, 2002. [PubMed] |
Journal Article |
UVA Health System. "Are you at risk for hereditary breast cancer?" Family History Brochure and Companion Guide for Health Care Providers. 2003 The University of Virginia. |
Journal Article |
Bruner, D.W., Baffoe-Bonnie, A., Miller, S.M., et.al. "A prostate cancer risk assessment program: A model for early detection of prostate cancer." Oncology. 1999; 13: 325-334. |
Journal Article |
Daly M.B., Barsevick A., Miller S.M., et al. "Communicating genetic test results to the family: A six-step, skills-building strategy" Fam Community Health. 24(3): 13-26 October 2001 |
Journal Article |
Hurley, K.E., Miller, S.M., Costalas, J.W., & Daly, M.B. "Anxiety/uncertainty reduction as a motivation for interest in prophylactic oophorectomy in women with a family history of ovarian cancer." Journal of Women's Health and Gender-Based Medicine. 2001; 10: 189-199. |
Journal Article |
Miller, S.M., V. Green and C.B. Bales. "What you don't know can hurt you: A cognitive-social framework for understanding children's responses to risk." In M. Lewis and D. Ramsay (Eds.), Soothing and Stress. NJ: Lawrence Erlbaum. 1999. |
Book Chapter |
Miller, S.M., Fang, C.Y., Diefenbach, M.A., & Bales, C. "Tailoring psychosocial interventions to the individual's health information processing style: The influence of monitoring versus blunting in cancer risk and disease." In A. Baum & B. Andersen (Eds.), Psychosocial interventions in cancer. Washington D.C.: American Psychological Association. 2001. |
Book Chapter |
Shoda, Y., Mischel, W., Miller, S.M., Diefenbach, M.A., Daly, M., & Engstrom, P. "Psychological interventions and genetic testing: Facilitating informed decisions about BRCA1/2 cancer susceptibility." Journal of Clinical Psychology in Medical Settings. 1998; 5: 3- 17. |
Journal Article |
Fang, C.F., Miller, S.M., Daly, M., & Hurley, K. "The influence of coping style and risk perceptions on decisions to undergo prophylactic oophorectomy among FDRs." Psychology and Health. 17(3): 365-376 June 2002. |
Journal Article |
Diefenbach, M., Miller, S.M., & Daly, M. "Specific worry about breast cancer predicts mammography use in women at risk for breast and ovarian cancer." Health Psychology. 1999; 18: 532-6. |
Journal Article |
Miller, S.M. and M.A. Diefenbach. "Stress and coping in the cancer context." In M.Lewis and J. Haviland (Eds.), Handbook of Emotion: Second Edition. New York, NY: The Guilford Press. 2000. |
Book Chapter |
Miller, S.M., Diefenbach, M.A., Kruus, L., Ohls, L., Hanks, G., Bruner, D., Baffoe-Bonnie, A., & Engstrom, P.E. "Psychological and screening profiles of first degree relatives of prostate cancer patients." Journal of Behavioral Medicine. 2001; 24: 247-258. |
Journal Article |
Miller S.M., Sherman K., Rodoletz M., et "The role of monitoring and anticipated BRCA1/2 carrier status on family communication intentions and plans among women with a hereditary pattern for breast/ovarian cancer" Psychosom Med. 64(1): 90 January-February 2002 |
Journal Article |
Miller, S. M., et al. (1999). "Monitoring styles in women at risk for cervical cancer: implications for the framing of health-relevant messages." Ann Behav Med 21(1): 27-34. [PubMed] [PubMed] |
Journal Article |
Miller, S.M. and M.A. Diefenbach. "The Cognitive-Social Health Information Processing (C-SHIP) model: A theoretical framework for research in behavioral oncology." In Krantz & A. Baum (Eds.), Technology and methodology in behavioral medicine. NJ: Lawrence Erlbaum. July 1998. |
Book Chapter |
Moodley, K. and S. Singh (2016). "Â It's all about trust " : reflections of researchers on the complexity and controversy surrounding biobanking in South Africa." BMC Medical Ethics 17.[ResearchGate] [PubMed] |
Journal Article |
Moseley, R.E., L.A. Crandall, M.A. Dewar et al. "Ethical Implications of a Complete Human Gene Map." Business and Professional Ethics. Winter 1991; 10(4): 1-14. |
Journal Article |
McCrary, S.V., W.L. Allen, R.E. Moseley et al. "Ethical and Practical Implications of the Human Genome Initiative for Family Medicine." Archives of Family Medicine. 1993; 2(11): 1158-1163. |
Journal Article |
Crandall, L.A. and R.E. Moseley. "Public Policy Implications of Scientific Research: The Human Genome Initiative and the Future of Insurance." The New Biologist. December 1991; 3(12): 1135-1136. |
Journal Article |
Dewar, M. A. et al. Genetic screening by insurance carriers. JAMA J. Am. Med. Assoc. 267, 1207–8 (1992). [PubMed] |
Journal Article |
Ostrer, H., W.L. Allen, L.A. Crandall et al. "Insurance and Genetic Testing: Where Are We Now?" American Journal of Human Genetics. 1993; 52: 565-577. |
Journal Article |
McCrary S.V. and W.L. Allen "The Human Genome Initiative and Primary Care." In: Ethics: Critical Issues for Today's Health Professional, eds. J.F. Monagle and D.C. Thomama. Gaithersburg, Maryland: Aspen Publishers, 1994. 447p. |
Book Chapter |
Noble, A.A., Moulton, B.W. eds. "DNA Fingerprinting and Civil Liberties." The Journal of Law, Medicine & Ethics. 2006; 34(2): 171-475. |
Journal Article |
Simoncelli, T., Steinhardt, B. "California's Proposition 69: A Dangerous Precedent for Criminal DNA Databases. Expert Testimony: Bridging Bioethics and Evidence Law." Journal of Law, Medicine & Ethics. 2005, 33(2):279-293. [PubMed] |
Journal Article |
Maclin, T. "Is Obtaining an Arrestee's DNA a Valid Special Needs Search Under the Fourth Amendment? What Should (and Will) the Supreme Court Do? Regulation of Biobanks." Journal of Law Medicine & Ethics. 2005, 33(1):102-24. [PubMed] |
Journal Article |
Weir, R.F. and J.R. Horton. "DNA Banking and Informed Consent--Part 1." IRB: A Review of Human Subjects Research. July-August 1995; 17(4): 1-4. [PubMed] |
Journal Article |
Weir, R.F. and J.R. Horton. "DNA Banking and Informed Consent--Part 2." IRB: A Review of Human Subjects Research. September-December 1995; 17(5&6): 1-8. [PubMed] |
Journal Article |
Murray, T. H., Rothstein, M. A. & Murray Jr., R. F. The Human Genome Project and the Future of Health Care. 264 (Indiana University Press, 1996). at |
Book |
Murray, T.H. "Genetics and the Moral Mission of Health Insurance." Hastings Center Report: 1992; 22(6): 12-17. |
Journal Article |
Murray, T.H. "Ethics, Genetic Prediction, and Heart Disease." American Journal of Cardiology. September 1993; 72(10): 80D-84D. [PubMed] |
Journal Article |
Murray, T.H. "Genetic Exceptionalism and 'Future Diaries': Is Genetic Information Different from Other Medical Information," in Mark A. Rothstein, Ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. New Haven: Yale University Press, 1997. |
Book Chapter |
Botkin, J.R. "Research for Newborn Screening: Developing a National Framework." Pediatrics 2005; 116(4):862-71. [PubMed] |
Journal Article |
Botkin, J.R., Clayton, E.W., Fost, N.C., Burke, W., Murray, T.H., Baily, A.M., Wilfond, B., Berg, A., Ross, L.F. "Newborn Screening Technology: Proceed With Caution."quot; Pediatrics. 2006; 117(5): 1793-1805. [PubMed] |
Journal Article |
Nelkin, D. The Grandiose Claims of Geneticists. Chron. High. Educ. March 3, B1–B2 (1993). [The Chronicle of Higher Education] |
Journal Article |
Nelkin, D. "The Media-ted Gene: Stereotyping Gender and Race." In: Deviant Bodies, eds. J. Urla and J. Terry. Bloomington: Indiana University Press; 1995. 416p. |
Book Chapter |
Nelkin, D. and L. Tancredi "Health Screening and Testing in the Public Health Context." In: Encyclopedia of Bioethics--Revised Edition. New York: Simon & Schuster MacMillan, 1995. 1129-1132p. |
Book Chapter |
Nelkin, D. and M.S. Lindee. The DNA Mystique: The Gene as a Cultural Icon. New York: W.H. Freeman and Company, 1995. 276p. |
Book |
Nelkin, D. "After Daubert: The Relevance and Reliability of Genetic Information." Cardozo Law Review. April 1994: 15(6-7); 2119-2128. |
Journal Article |
Nelkin, D. "Promotional Metaphors and Their Popular Appeal." Public Understanding of Science. 1994; 3: 25-31. |
Journal Article |
Nelkin, D. "The Social Power of Genetic Information." In: The Code of Codes: Scientific and Social Issues in the Human Genome Project, eds. D.J. Kevles and L. Hood. Cambridge: Harvard University Press; 1992. |
Book Chapter |
Nelkin, D. "Forms of Intrusion: Comparing Resistance to Information Technology and Biotechnology." In: Resistance to Technology, Martin Bauer, Ed. Cambridge: Cambridge University Press; 1995. |
Book Chapter |
Dreyfus, R.C., and D. Nelkin. "The Jurisprudence of Genetics." Vanderbilt Law Review. 1992; 45(2):313-348. [PubMed] |
Journal Article |
Nelkin, D. Patents On Some Science Findings Would Present Problems | The Scientist Magazine®. at [The Scientist Magazine Online] |
Journal Article |
Kim H, Bell E, Kim J, Sitapati A, Ramsdell J, Farcas C, Friedman D, Feupe SF, Ohno-Machado L. . iCONCUR: informed consent for clinical data and bio-sample use for research. J Am Med Inform Assoc, 24 (2):380-287. 2017. [PubMed] | Journal Article |
Bioinformatics. 2017 Dec 1;33(23):3716-3725. doi: 10.1093/bioinformatics/btx470. |
Journal Article |
Whitehead Institute for Biomedical Research, The George Washington University Medical Center and American Society for Law, Medicine & Ethics. "Genes and Society: Impact of New Technologies on Law, Medicine, and Policy." Whitehead Policy Symposium Report and CD-ROM. May 10-12, 2000. Cambridge, Massachusetts. |
Journal Article |
Whitehead Institute for Biomedical Research and American Society for Law, Medicine & Ethics. "The Human Genome Project: Science, Law and Social Change in the 21st Century." Whitehead Policy Symposium Report and CD-ROM. April 23-24, 1998. Cambridge, Massachusetts. |
Journal Article |
Pagon, R.A. and P. Tarczy-Hornoch. GeneClinics: Medical Genetics Knowledge Base [PubMed]. |
Website |
Wheeler P.G., Smith R., Dorkin H., Parad R.B., Comeau A.M., Bianchi D.W. "Genetic counseling after implementation of statewide cystic fibrosis newborn screening: Two years' experience in one medical center." Genetics in Medicine 2001; 3(3):411-415. |
Journal Article |
Koo, B. The transitional dynamics of patent reform. Journal of Economic Policy Reform, 12(4):249-262. 2009. |
Journal Article |
Lei, Z, Juneja, R, Wright, BD. Patents versus patenting: implications of intellectual property protection for biological research. Nature Biotechnology, 27(1):36-40. 2009. [PubMed] |
Journal Article |
Parens, E. and A. Asch. "The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations." Special Supplement, Hastings Center Report . September-October 1999; 29(5): S1-S22. [PubMed] |
Journal Article |
Parens, E. and A. Asch. eds. Prenatal Testing and Disability Rights. Washington, D.C.: Georgetown University Press, 2000. 371p. |
Book |
Parens, E., Chapman, A.R., Press, N.A. (eds.) Wrestling with Behavioral Genetics: Science, Ethics, and Public Conversation. Baltimore, Maryland: Johns Hopkins University Press. 2006. |
Book |
Parens E. "Genetic Differences and Human Identities: On Why Talking about Behavioral Genetics Is Important and Difficult." Hastings Center Report. Special Supplement. January-February 2004: S1-S34. [PubMed] |
Journal Article |
Peters, T. "Genome Project Forces New Look at Ethics, Law." Forum for Applied Research and Public Policy: Fall 1993; 8(3): 5-13. [PubMed] |
Journal Article |
Peters, T. "Intellectual Property and Human Dignity." in: The Genetic Frontier: Ethics, Law and Policy, eds. Frankel and Teich. Washington, DC: AAAS, 1994. |
Book Chapter |
Cole-Turner, R. The New Genesis: Theology and the Genetic Revolution. Westminster: John Knox Press, 1993. 127p. |
Book |
Peters, T. and R.J. Russell. "The Human Genome Project: What Questions Does It Raise for Theology and Ethics?" Midwest Medical Ethics. Summer 1992: 8(1); 12-17. |
Journal Article |
Shannon, T.A. "Ethical Issues in Genetic Engineering: A Survey." Midwest Medical Ethics. Summer 1992; 8(1): 26-29. |
Journal Article |
Cole, R.D. "Genetic Predestination." Dialog: a Journal of Theology. 1994; 33(1): 17-22. |
Journal Article |
Lebacqz, K. "Genetic Privacy: No Deal for the Poor." Dialog: a Journal of Theology. 1994; 33(1): 39-48. |
Journal Article |
Cole-Turner, R. "The Genetics of Moral Agency." In: The Genetic Frontier: Ethics, Law and Policy, eds. M. Frankel and A. Teich. Washington, DC: AAAS, 1994. |
Book Chapter |
Peters, T., Ed. Genetics: Issues of Social Justice. Cleveland: Pilgrim Press, 1998. [Georgetown Repository] |
Book |
Heffner, P. "Determinism, Freedom, and Moral Failure." Dialog: a Journal of Theology. 1994; 33(1): 23-29. |
Journal Article |
Cole-Turner, R. "Religion and the Human Genome Project." Journal of Religion and Health. 1993: 31(2); 161-173. |
Journal Article |
Peters, T. "On the Gay Gene: Back to Original Sin Again?" Dialog: a Journal of Theology. 1994; 33(1): 30-38. |
Journal Article |
Cole-Turner, R. "Genetic Counseling and Pastoral Counseling." Dialog: a Journal of Theology. 1994; 33(1): 49-53. |
Journal Article |
Radecki Breitkopf, C., Wolf, S. M., Chaffee, K. G., Robinson, M. E., Lindor, N. M., Gordon, D. R., . . . Petersen, G. M. (2018). 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, 13(3), 295-304. doi:10.1177/1556264618769165 [PubMed] |
Journal Article |
Smith, K. R., Zick, C. D., Mayer, R. N. & Botkin, J. R. Voluntary disclosure of BRCA1 mutation test results. Genet. Test. 6, 89–92 (2002). [PubMed] |
Journal Article |
Gordon DR, Radecki Breitkopf C, Robinson M, Petersen WO, Egginton JS, Chaffee KG, Petersen GM, Wolf SM, Koenig BA . Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.. AJOB Empirical Bioethics, 2018. [PubMed] (AJOB Empir Bioeth. 2018 Dec 31:1-22. doi: 10.1080/23294515.2018.1546241.) | Journal Article |
Green, R. C., et al. (2013). "ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing." Genet Med 15(7): 565-574. [PubMed] [PubMed] |
Journal Article |
Couzin-Frankel, J. Clinical research. Divulging DNA secrets of dead stirs debate. Science 343, 356–7 (2014). [PubMed] |
Journal Article |
Burke, W. et al. Recommendations for returning genomic incidental findings? We need to talk! Genet. Med. 15, 854–9 (2013). [PubMed Central] |
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 |
Clayton, E. W. et al. Addressing the ethical challenges in genetic testing and sequencing of children. Am. J. Bioeth. AJOB 14, 3–9 (2014). [PubMed] |
Journal Article |
Anglin, D. M., Link, B. G. & Phelan, J. C. Racial differences in stigmatizing attitudes toward people with mental illness. Psychiatr. Serv. 57, 857–62 (2006). [PubMed] |
Journal Article |
Phelan, J.C., Cruz-Rojas, R., Reiff, M. "Genes and stigma: The connection between perceived genetic etiology and attitudes and beliefs about mental illness." Psychiatric Rehabilitation Skills. 2002; 6: 159-85. |
Journal Article |
Phelan, J.C., Yang, L., Cruz-Rojas, R. "Effects of attributing serious mental illnesses to genetic causes on orientations to treatment." Psychiatric Services. 2006. 57(3):382-7. [PubMed] |
Journal Article |
Phelan, J.C. "Genetic bases for mental illness?a cure for stigma?" Trends in Neurosciences. 2002; 25(8):430-1. [PubMed] |
Journal Article |
Phelan, J.C. "Geneticization of deviant behavior and consequences for stigma: The case of mental illness." Journal of Health and Social Behavior. 2005; 46(4): 307-22. [PubMed] |
Journal Article |
Phelan, J. C., Link, B. G. & Feldman, N. M. The Genomic Revolution and Beliefs about Essential Racial Differences: A Backdoor to Eugenics? Am. Sociol. Rev. 78, 167–191 (2013). [PubMed Central] |
Journal Article |
Vanderbilt University Medical Center. (1997). "Let's Talk" An Introduction to Cystic Fibrosis Testing. (An educational brochure and videotape on cystic fibrosis testing). Nashville: Vanderbilt Division of Genetics, Vanderbilt University Medical Center. In V. University (Ed.). Nashville. |
Journal Article |
Campbell, P.W. III and J.A. Phillips, III. "The Cystic Fibrosis Gene and Relationships to Clinical Status." Seminars in Respiratory Infections. 1992; 7: 150-157. |
Journal Article |
Raskin, S. et al. "Cystic Fibrosis Genotyping by Direct PCR Analysis of Guthrie Blood Spots." PCR Methods and Applications. 1992; 2: 154-156. |
Journal Article |
Raskin, S. et al. "Utility of Internal Markers to Improve the Accuracy of Cystic Fibrosis (CF) Genotype Analysis." Biotechniques. 1992; 13: 372-374. |
Journal Article |
The Cystic Fibrosis Genotype-Phenotype Consortium. Correlation between genotype and phenotype in patients with cystic fibrosis. The Cystic Fibrosis Genotype-Phenotype Consortium. N. Engl. J. Med. 329, 1308–13 (1993). [PubMed] |
Journal Article |
Campbell, P.W. et al. "Association of Poor Clinical Status and Heavy Exposure to Tobacco Smoke in Cystic Fibrosis Patients Homozygous for the F508 Deletion." Journal of Pediatrics. 1992; 12: 261-264. |
Journal Article |
Raskin, S. et al. "DNA Analysis of Cystic Fibrosis in Brazil by Direct PCR Amplification from Guthrie Cards." American Journal of Medical Genetics. 1993; 46: 665-669. |
Journal Article |
Parker, R.A. and J.A. Phillips, III. "Population Screening for Carrier Status: Effects of Test Limitations on Precision of Carrier Prevalence Sites." American Journal of Medical Genetics. 1994; 49: 317-322 [PubMed] |
Journal Article |
Clayton, E.W., V.L. Hannig, J.P. Pfotenhauer et al. "Teaching about Cystic Fibrosis Carrier Screening by Using Written and Video Information." The American Journal of Human Genetics. July 1995; 57(1): 171-181. |
Journal Article |
Last updated: January 24, 2019