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.
DeMarco TA, Peshkin BN, Brogan BM . Across the Spectrum: Case Studies in Genetic Counseling for Breast and Ovarian Cancer. J Genet Couns, 10 (5):379-95. 2001. [Full Text] | Journal Article |
Tercyak, K. P., Peshkin, B. N., Streisand, R., & Lerman, C. (2001). Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psycho-Oncology, 10(4), 336–46. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/11462232 [PubMed] |
Journal Article |
Tercyak, K. P., Lerman, C., Peshkin, B. N., Hughes, C., Main, D., Isaacs, C., & Schwartz, M. D. (2001). Effects of coping style and BRCA1 and BRCA2 test results on anxiety among women participating in genetic counseling and testing for breast and ovarian cancer risk. Health Psychology, 20(3), 217–22. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/11403219 [PubMed] |
Journal Article |
Peshkin, B. N., DeMarco, T. A., Brogan, B. M., Lerman, C. & Isaacs, C. BRCA1/2 testing: complex themes in result interpretation. J. Clin. Oncol. 19, 2555–65 (2001). [PubMed] |
Journal Article |
Lerman C. "Psychological aspects of genetic testing: Introduction to the Special Issues." Health Psychology. 1997; 16: 3-7. |
Journal Article |
Hughes, C. et al. All in the family: evaluation of the process and content of sisters’ communication about BRCA1 and BRCA2 genetic test results. Am. J. Med. Genet. 107, 143–50 (2002). [PubMed] |
Journal Article |
Hughes, C. et al. Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk. Patient Educ. Couns. 32, 51–62 (1997). [PubMed] |
Journal Article |
Benkendorf, J. L. et al. Patients’ attitudes about autonomy and confidentiality in genetic testing for breast-ovarian cancer susceptibility. Am. J. Med. Genet. 73, 296–303 (1997). [PubMed] |
Journal Article |
Graves KD, Wenzel L, Schwartz MD, Luta G, Wileyto P, Narod S, Peshkin BN, Marcus A, Cella D, Emsbo SP, Barnes D, Halbert CH . Randomized controlled trial of a psychosocial telephone counseling intervention in BRCA1 and BRCA2 mutation carriers. Cancer Epidemiol Biomarkers Prev, 19 (3):648-54. 2010. [PubMed] | Journal Article |
Halbert, C. H. et al. Predictors of participation in psychosocial telephone counseling following genetic testing for BRCA1 and BRCA2 mutations. Cancer Epidemiol. Biomarkers Prev. 13, 875–81 (2004). [PubMed] |
Journal Article |
Halbert, C. H. Decisions and outcomes of genetic testing for inherited breast cancer risk. Ann. Oncol. 15 Suppl 1, I35–I39 (2004). [PubMed] |
Journal Article |
Manne, S. et al. Associations between relationship support and psychological reactions of participants and partners to BRCA1 and BRCA2 testing in a clinic-based sample. Ann. Behav. Med. 28, 211–25 (2004). [PubMed] |
Journal Article |
Lerman, C. et al. Racial differences in testing motivation and psychological distress following pretest education for BRCA1 gene testing. Cancer Epidemiol. Biomarkers Prev. 8, 361–7 (1999). [PubMed] |
Journal Article |
Lerman, C. et al. Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J. Natl. Cancer Inst. 89, 148–57 (1997). [PubMed] |
Journal Article |
Lawrence, W. F. et al. Cost of genetic counseling and testing for BRCA1 and BRCA2 breast cancer susceptibility mutations. Cancer Epidemiol. Biomarkers Prev. 10, 475–81 (2001). [PubMed] |
Journal Article |
Lerman, C., Croyle, R. T., Tercyak, K. P. & Hamann, H. Genetic testing: psychological aspects and implications. J. Consult. Clin. Psychol. 70, 784–97 (2002). [PubMed] |
Journal Article |
Graves KD, Peshkin BN, Halbert CH, DeMarco TA, Isaacs C, Schwartz MD . Predictors and outcomes of contralateral prophylactic mastectomy among breast cancer survivors. Breast Cancer Res Treat, 104 (3):321-9. 2007. [PubMed] | Journal Article |
Halbert, C. H. et al. Predictors of cognitive appraisals following genetic testing for BRCA1 and BRCA2 mutations. J. Behav. Med. 27, 373–92 (2004). [PubMed] |
Journal Article |
Cella D., Hughes C., Peterman A., Chang C.H., Peshkin B.N., Schwartz M.D., Wenzel A., Lemke A., Marcus A., Lerman C. "A Brief Assessment of Concerns Associated with Genetic Testing for Cancer: The Multidimensional Impact of Cancer Risk Assessment (MICRA) Questionnaire." Health Psychology. (accepted for publication) [PubMed] |
Journal Article |
Audrain, J., M.D. Schwartz, C. Lerman et al. "Psychological distress in women seeking genetic counseling for breast-ovarian cancer risk: The contributions of personality and appraisal." Annals of Behavioral Medicine. Fall 1998; 19(4): 370-7. |
Journal Article |
McDonald, J. A. et al. Understanding participation by African Americans in cancer genetics research. J. Natl. Med. Assoc. 104, 324–30 (2012). [PubMed Central] |
Journal Article |
Halbert, C. H. et al. Long-term reactions to genetic testing for BRCA1 and BRCA2 mutations: does time heal women’s concerns? J. Clin. Oncol. 29, 4302–6 (2011). [PubMed Central] |
Journal Article |
McDonald, J. A. et al. Donation intentions for cancer genetics research among African Americans. Genet. Test. Mol. Biomarkers 16, 252–8 (2012). [PubMed Central] |
Journal Article |
Hunt, L. M., Truesdell, N. D. & Kreiner, M. J. Genes, Race, and Culture in Clinical Care: Racial Profiling in the Management of Chronic Illness. Med. Anthropol. Q. (2013). doi:10.1111/maq.12026 [PubMed] |
Journal Article |
Hunt, L. M., Kreiner, M. & Brody, H. The changing face of chronic illness management in primary care: a qualitative study of underlying influences and unintended outcomes. Ann. Fam. Med. 10, 452–60 (2012). [Annals of Family Medicine] |
Journal Article |
Hunt, L. M. & Kreiner, M. J. Pharmacogenetics in primary care: the promise of personalized medicine and the reality of racial profiling. Cult. Med. Psychiatry 37, 226–35 (2013). [PubMed] |
Journal Article |
Nash, Audrey et. al (editors). "Science and Social Responsibility in the New Millennium Conference Proceedings." Washington, DC: Student Pugwash USA. Summer 2000. |
Book |
Science and Social Responsibility in the New Millennium: Conference Report. Washington, DC: Student Pugwash USA, June 1999. |
Journal Article |
Nash A et al. Science and Social Responsibility in the New Millenium. La Jolla, CA: Student Pugwash USA 1999. | Book |
Mind-full: A Brainsnack for Future Leaders with Ethical Appetites: Volume Two. Washington, DC: Student Pugwash USA, May 1999. |
Journal Article |
War-free world. mind-full a brainsnack Futur. leaders with ethical Appet. 2, 8 (1999). |
Journal Article |
Himes, P., Kauffman, T. L., Muessig, K. R., Amendola, L. M., Berg, J. S., Dorschner, M. O., . . . Goddard, K. A. B. (2017). Genome sequencing and carrier testing: decisions on categorization and whether to disclose results of carrier testing. Genet Med, 19(7), 803-808. doi:10.1038/gim.2016.198 [PubMed] |
Journal Article |
Tan, N., Amendola, L. M., O'Daniel, J. M., Burt, A., Horike-Pyne, M. J., Boshe, L., . . . Jarvik, G. P. (2017). Is "incidental finding" the best term?: a study of patients' preferences. Genet Med, 19(2), 176-181. doi:10.1038/gim.2016.96 [PubMed] |
Journal Article |
Kraft SA1, McMullen CK, Porter KM, Kauffman TL, Davis JV, Schneider JL, Goddard KAB, Wilfond BS . Patient perspectives on the use of categories of conditions for decision making about genomic carrier screening results. Am J Med Genet A., 2018. [PubMed] (Am J Med Genet A. 2018 Feb;176(2):376-385. doi: 10.1002/ajmg.a.38583. Epub 2017 Dec 18.) | Journal Article |
Wilfond BS, Kauffman TL, Jarvik GP, Reiss JA, Richards CS5, McMullen C, Gilmore M, Himes P, Kraft SA, Porter KM, Schneider JL, Punj S, Leo MC, Dickerson JF, Lynch FL, Clarke E, Rope AF, Lutz K, Goddard KAB. . Anticipated responses of early adopter genetic specialists and nongenetic specialists to unsolicited genomic secondary findings. Genet Med, 2018. [PubMed] (Genet Med. 2018 Oct;20(10):1186-1195. doi: 10.1038/gim.2017.243. Epub 2018 Feb 1.) | Journal Article |
Wilfond BS, Kauffman TL, Jarvik GP, Reiss JA, Richards CS, McMullen C, Gilmore M, Himes P, Kraft SA, Porter KM, Schneider JL, Punj S, Leo MC, Dickerson JF, Lynch FL, Clarke E, Rope AF, Lutz K, Goddard KAB. . Lessons Learned From A Study Of Genomics-Based Carrier Screening For Reproductive Decision Making. Health Aff (Millwood), 2017. [PubMed] (Health Aff (Millwood). 2018 May;37(5):809-816. doi: 10.1377/hlthaff.2017.1578.) | Journal Article |
Elizabeth V. Clarke, Jennifer L. Schneider, Frances Lynch, Tia L. Kauffman, Michael C. Leo, Ana G. Rosales, John F. Dickerson, Elizabeth Shuster, Benjamin S. Wilfond, Katrina A. B. Goddard . Assessment of willingness to pay for expanded carrier screening among women and couples undergoing preconception carrier screening. PLOS One, 2018. (Clarke EV, Schneider JL, Lynch F, Kauffman TL, Leo MC, Rosales AG, et al. (2018) Assessment of willingness to pay for expanded carrier screening among women and couples undergoing preconception carrier screening. PLoS ONE 13(7): e0200139. https://doi.org/10.1371/journal.pone.0200139) | Journal Article |
Creating a data resource: what will it take to build a medical information commons? |
Journal Article |
Bernhardt BA, Roche MI, Perry DL, Scollon SR, Tomlinson AN, Skinner D . Experiences with obtaining informed consent for genomic sequencing.. Am J Genet A, 167A (11):2635-46. 2015. [Wiley Online Library] | Journal Article |
Nelson, S. C. and S. M. Fullerton (2018). ""Bridge to the Literature"? Third-Party Genetic Interpretation Tools and the Views of Tool Developers." J Genet Couns 27(4): 770-781. [PubMed] [PubMed] |
Journal Article |
Kauffman TL, Wilfond BS, Jarvik GP, Leo MC, Lynch FL, Reiss JA, Richards CS, McMullen C, Nickerson D, Dorschner MO, Goddard KA. . Design of a randomized controlled trial for genomic carrier screening in healthy patients seeking preconception genetic testing.. Contemp Clin trials, 53 100-105. 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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Evans BJ . Economic regulation of next-generation sequencing.. J Law Med Ethics, 42 (S1):51-66. 2014. [Sage] | Journal Article |
Aronson JD . The Strengths and Limitations of South Africa's Search for Apartheid-Era Missing Persons. Int J Transit Justice, 5 (2):262-81. 2011. [Full Text] | Journal Article |
Jayaratne, T.E., Ybarra, O., Sheldon, J.P., Brown, T.N., Feldbaum, M., Pfeffer, C.A., Petty, E.M. "White Americans' Genetic Lay Theories of Race Differences and Sexual Orientation: Their Relationship with Prejudice toward Blacks, and Gay Men and Lesbians." Group Processes & Intergroup Relations. 2006; 9(1): 77-94. [PubMed] |
Journal Article |
Cole ER, Jayaratne TE, Cecchi LA, Feldbaum MB, Petty EM. Vive La Difference? Genetic Explanations for Perceived Gender Differences in Nurturance. Sex Roles Springer Science. 57(3-4):211-22. 2007. [Full Text] |
Journal Article |
Sheldon, J. P., Pfeffer, C. A., Jayaratne, T. E., Feldbaum, M. & Petty, E. M. Beliefs about the etiology of homosexuality and about the ramifications of discovering its possible genetic origin. J. Homosex. 52, 111–50 (2007). [Taylor & Francis Online] |
Journal Article |
Brown TN, Akiyama MK, White IK, Jayaratne TE, Anderson ES . Differentiating Contemporary Racial Prejudice from Old-Fashioned Racial Prejudice. Race Soc Probl, 1 (2):97-110. 2009. [PubMed] | Journal Article |
Christensen KD, Jayaratne TE, Roberts JS, Kardia SL, Petty EM . Understandings of basic genetics in the United States: results from a national survey of black and white men and women.. Public Health Genomics, 13 (7-8):467-76. 2010. [PubMed] | Journal Article |
Suhay, E. & Jayaratne, T. E. Does Biology Justify Ideology? The Politics of Genetic Attribution. Public Opin. Q. 77, 497–521 (2012). [Oxford Journals] |
Journal Article |
Sheldon, J. P., Epstein Jayaratne, T., Feldbaum, M. B., DiNardo, C. D. & Petty, E. M. Applications and implications of advances in human genetics: perspectives from a group of Black Americans. Community Genet. 10, 82–92 (2007). [PubMed] |
Journal Article |
Lanie, A. D. et al. Exploring the public understanding of basic genetic concepts. J. Genet. Couns. 13, 305–20 (2004). [PubMed] |
Journal Article |
Jayaratne, T. E. et al. The perennial debate: Nature, nurture, or choice? Black and White Americans’ explanations for individual differences. Rev. Gen. Psychol. 13, 24–33 (2009). [PubMed] |
Journal Article |
Durfy, S.J. "Ethics and the Human Genome Project." Archives of Pathology and Laboratory Medicine. May 1993: 117(5); 466-469. |
Journal Article |
Jonsen, A.R. "Genetic Testing, Individual Rights, and the Common Good." In: Duties to Others, eds. C. Campbell and A. Lustig. Boston: Kluwer Academic, 1994. 319p. |
Book Chapter |
Callahan, T.C.; S.J. Durfy; and A.R. Jonsen. "Ethical Reasoning in Clinical Genetics: A Survey of Cases and Methods." Journal of Clinical Ethics. Fall 1995: 6(3); 248-253. |
Journal Article |
Jonsen, A.R. "The Impact of Mapping the Human Genome on the Patient Physician Relationship." In: The Human Genome Project and The Future of Health Care, eds. T.H. Murray, M. Rothstein, and R. Murray. Bloomington: Indiana University Press, 1996. 248p. |
Book Chapter |
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 |
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 |
Leppert M, Matsuda I, et al. Community Engagement, Public Consultation, and Informed Consent in the International HapMap Project. Community Genetics, 10(3):186-198. 2007. [PubMed] |
Journal Article |
Winkelman C, Higgins PA, Chen Y-J K, Levin A. Cytokines in chronically critically ill patients after activity and rest. Biologic Research for Nursing, 8(4):261-71. 2007. [PubMed] |
Journal Article |
Binstock, R. H. & Fishman, J. R. in SAGE Handb. Soc. Gerontol. (Dannefer, D. & Phillipson, C.) 472–482 (Sage Publications, Inc., 2010). |
Book Chapter |
Fishman, J. R., Binstock, R. H. & Lambrix, M. A. Anti-aging science: The emergence, maintenance, and enhancement of a discipline. J. Aging Stud. 22, 295–303 (2008). [Science Direct] |
Journal Article |
Davis D. Genetic Testing and Tort Actions. In Genetic Testing: Care, Consent, and Liability. N.F. Sharpe and R.F, eds. Carter. Hoboken, N.J. , Wiley-Liss: 107-127. 2006. |
Book Chapter |
Hoffman S, Berg J. The Suitability of IRB Liability. University of Pittsburgh Law Review, 67(2):365-428. 2005. |
Journal Article |
Marshall P, Berg J. Protecting Communities in Biomedical Research. American Journal of Bioethics, 6(3): 28-30. 2006. [PubMed] |
Journal Article |
Natowicz M, Kass N, et al. Access to Health Insurance: Experiences and Attitudes of those with Genetic versus Non-genetic Medical conditions. American Journal Medical Genetics 143A(7):707-717. 2007. [PubMed] |
Journal Article |
Hoffman S, Podgurski A. Securing the HIPAA Security Rule. Journal of Internet Law, 10(1). 2007. |
Journal Article |
Leppert M, Matsuda I, et al. Community Engagement, Public Consultation, and Informed Consent in the International HapMap Project. Community Genetics. [PubMed] [PubMed] |
Journal Article |
Gaines, A.D, Race: Local biology and culture in mind. Chapter 15. Casey, C., Edgerton, R.B. (eds.) A Companion to Psychological Anthropology. Blackwell. pp. 274-97. 2005. |
Book Chapter |
Hoffman, S. (2005). ""Racially-tailored" medicine unraveled." Am Univ Law Rev 55(2): 395-452. [PubMed] [PubMed] |
Journal Article |
Juengst, E.: Population-based Genetic Research and Screening: Conceptual and Ethical Issues. In The Handbook of Bioethics. B. Steinbook(ed.). Oxford, Oxford University Press: 471-491. 2006. |
Book Chapter |
Marshall, P.: Ethical Issues in Research Design and Informed Consent in Resource Poor Countries. World Health Organization. 2006. |
Book |
Berg, J. W. Of Elephants and Embryos: A Proposed Framework for Legal Personhood. Hast. Law J. 59, 369 (2007). [Selected Works] |
Journal Article |
Juengst, E. T. & Goldenberg, A. in Oxford Textb. Clin. Res. Ethics (Emanuel, E. J. et al.) 298–314 (Oxford University Press, 2008). |
Book Chapter |
Juengst, E. "Altering the human species? Misplaced essentialism in science policy," In Rasko, J., O'Sullivan, G. and Ankeny, R. (eds.), The Ethics of Inheritable Genetic Modification: A Dividing Line? Cambridge: Cambridge University Press. pp. 149-58. 2006 |
Book Chapter |
Macklin, R., Juengst, E.: Genetic and reproductive technologies. In The Encyclopedia of Philosophy, 2nd Edition. Thompson Gale. 2006. |
Book Chapter |
Workman, M. L. & Winkelman, C. Genetic influences in common respiratory disorders. Crit. Care Nurs. Clin. North Am. 20, 171–89, vi (2008). [PubMed] |
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 |
Juengst, E.T. "Anticipating Enhancement: A Conceptual and Ethical Challenge for Gene Therapy Regulation." p.97-109, in Gene Therapy and Ethics, A. Nordgren, Ed. Uppsala: Acta Universitatis Upsaliensis, 1999. |
Book Chapter |
Mehlman, M.J. "How Will We Regulate Genetic Enhancement?" Wake Forest Law Review. Fall 1999; 34(3): 671-714. |
Journal Article |
Mehlman, M.J. "The Law of Above Averages: Leveling the New Genetic Enhancement Playing Field." Iowa Law Review. 2000; 85: 124-130. |
Journal Article |
Juengst, E.T. "Can Prevention be Distinguished from Enhancement in Genetic Medicine?" Journal of Medicine and Philosophy. 1997; 22: 125-142. |
Journal Article |
Whitehouse, P.J., E.T. Juengst, T.H. Murray and M.J. Mehlman. "Enhancing Cognition in the Intellectually Intact." The Hastings Center Report. May-June 1997; 27: 14-23. [PubMed] |
Journal Article |
Juengst, E.T. "Concepts of Disease after the Human Genome Project." p. 125-152, in Ethics and Values in Health Care on the Frontiers of the Twenty-First Century, S. Wear and James (eds.) (Bono Philosophy and Medicine Book Series, Volume ) Uppsala: Uppsala University Library, 1999. |
Book Chapter |
Mehlman, M.J. "The Human Genome Project and the Courts: Gene Therapy and Beyond." Judicature. November-December 1999; 83(3): 124-130. |
Journal Article |
Mehlman, M. J. in Encycl. Ethical, Leg. Polit. Issues Biotechnol. (Murray, T. H. & Mehlman, M. J.) (John Wiley and Sons, 2000). |
Book Chapter |
Juengst, E. T. in Encycl. Ethical, Leg. Polit. Issues Biotechnol. (Murray, T. H. & Mehlman, M. J.) (John Wiley and Sons, 2000). |
Book Chapter |
Juengst, E.T. and E. Parens. "Germ-line Dancing: Definitional Considerations for Science Policy Makers." In Points to Consider Regarding Inherited Genetic Modifications in Human Beings, A. Chapman and M. Frankel (eds.) Washington, DC: AAAS. 2003. |
Book Chapter |
Juengst, E.T. and L. Walters. "Ethical Issues in Human Gene Transfer Research." p. 691-712, in The Development of Human Gene Therapy, T. Friedman, Ed. Cold Spring Harbor, NY: Cold Spring Harbor Laboratory Press, 1999. |
Book Chapter |
Juengst E.T. "Growing pains: Bioethical perspectives on growth hormone replacement research" J Anti-Aging Med, 5(1): 73-79 Spring 2002 |
Journal Article |
Whitehouse, P.J, Juengst, E.T. "Antiaging medicine and mild cognitive impairment: Practice and policy issues for geriatrics." J. Am. Geriatr. Soc.. 2005; 53(8): 1417-1422. [PubMed] |
Journal Article |
Last updated: January 24, 2019