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.
Winkelman C. Invited topic. Inflammation and Genomics in the Critical Care Unit. Critical Care Nursing Clinics of North America. 2008 Jun;20(2):213-21, [PubMed] |
Journal Article |
Fanshawe, TR., Prevost, AT, Roberts, JS, Green, RC, Armstrong, D, Marteau, TM. Explaining Behavior Change after Genetic Testing: The Problem of Collinearity between Test Results and Risk Estimates. Genetic Testing, 12(3):381-386. 2008. [PubMed Central] |
Journal Article |
Adebamowo CA. West African Bioethics Training Program: Raison D'être. Afr J Med Med Sci. 2007;36 Suppl:35-8. [PubMed] |
Journal Article |
Eyelade, O. R., et al. (2011). "An appraisal of the process of protocol review by an ethics review conmmittee in a tertiary institution in Ibadan." Afr J Med Med Sci 40(2): 163-169. [PubMed] [PubMed] |
Journal Article |
Ogundiran, T. O. & Adebamowo, C. A. Surgeons’ opinions and practice of informed consent in Nigeria. J. Med. Ethics 36, 741–5 (2010). [Journal of Medical Ethics] |
Journal Article |
Kaye, J. et al. Research priorities. ELSI 2.0 for genomics and society. Science (80-. ). 336, 673–4 (2012). [PubMed] |
Journal Article |
Kim, N. S., Ahn, W.-k., Johnson, S. G. B., & Knobe, J. (2016). The influence of framing on clinicians’ judgments of the biological basis of behaviors. Journal of Experimental Psychology: Applied, 22(1), 39-47. |
Journal Article |
Admunson, R, Tresky, S. Bioethics and disability rights: Conflicting values and perspectives. Journal of Bioethical Inquiry, 5(2-3):111-123. 2008. [Georgetown GenETHX] |
Journal Article |
Anderson, G. "State of the science: Social, psychological, ethical nursing research in genetics." Biological Research for Nursing. 1999; 1(2): 133-146. [PubMed] |
Journal Article |
Anderson, G., C. Yetter Read, R. Monsen. "Genetics, nursing and public policy: Setting an international agenda." Policy, Politics and Nursing Practice. 2000; 1(4): 245-255. [Abstract] |
Journal Article |
Andrews, L.B. "Compromised Consent: Deficiencies in the Consent Process for Genetic Testing." Journal of the American Medical Women's Association. 1997; 52(1): 39-42, 44. [PubMed] |
Journal Article |
Andrews, L.B. "Past as Prologue: Sobering Thoughts about Genetic Enthusiasm." Seton Hall Law Review. 1997; 27(3): 893-918. [PubMed] |
Journal Article |
Andrews, L.B. "Predicting and Punishing Anti-Social Acts." Behavioral Genetics: The Clash of Culture and Biology. R.A. Carson, M. Rothstein, F.E. Bloom, eds. Baltimore, MD; Johns Hopkins University Press, 224p. May 1999. |
Book Chapter |
Andrews, L.B. "Genetic Fallout: New Technologies Are Changing the Legal Landscape." Trial. 1995; 31(12): 20-27. [PubMed] |
Journal Article |
Andrews, L.B. "Prenatal Screening and the Culture of Motherhood." Hastings Law Journal. 1996; 47(4): 967-1006. [PubMed] |
Journal Article |
Andrews LB . Body Science. ABA J, 83 44-49. 1997. | Journal Article |
Andrews, L.B. "Gen-etiquette: Are There Moral and Legal Responsibilities to Share Genetic Information within Families?" Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. Mark Rothstein, Ed. New Haven: Yale University Press, 1997. |
Book Chapter |
Koenig BA, G. H. M. L. S. H. R. T. and the members of the B. C. W. G. of the S. P. in G. E. and S. Genetic Testing for BRCA1 and BRCA2: Recommendations of the Stanford Program in Genomics, Ethics, and Society. J. Women’s Heal. 7, 531–545 (1998). [FSI Stanford] |
Journal Article |
Antes AL, DuBois JM. . Cultivating the Human Dimension in Research. Mol Cell, 2018. [PubMed] (Mol Cell. 2018 Oct 18;72(2):207-210. doi: 10.1016/j.molcel.2018.09.015.) | Journal Article |
Klitzman, R., Appelbaum, P. S. & Chung, W. K. Should life insurers have access to genetic test results? JAMA 312, 1855–6 (2014). [PubMed] |
Journal Article |
Caminiti CB, Hesdorffer DC, Shostak S, Goldsmith J, Sorge ST, Winawer MR, Phelan JC, Chung WK, Ottman R . Parents' interest in genetic testing of their offspring in multiplex epilepsy families.. Epilepsia, 57 (2):279-87. 2016. [Wiley Online Library] | Journal Article |
Ottman R, Freyer C, Mefford HC, Poduri A, Lowenstein DH; Epilepsy Return of Results Workshop Participants. . Return of individual results in epilepsy genomic research: A view from the field.. Epilepsia, 2018. [PubMed] (Epilepsia. 2018 Sep;59(9):1635-1642. doi: 10.1111/epi.14530. Epub 2018 Aug 10.) | Journal Article |
Am J Bioeth. 2017 Apr; 17(4): 27–29. |
Journal Article |
Sabatello, M . Precision medicine, health disparities, and ethics: the case for disability inclusion. Genet Med, 20 (4):397-399. 2017. [PubMed] | Journal Article |
Appelbaum, P. S. and S. Benston (2017). "Anticipating the Ethical Challenges of Psychiatric Genetic Testing." Curr Psychiatry Rep 19(7): 39. [PubMed] [PubMed] |
Journal Article |
Maya Sabatello, Paul S. Appelbaum . The Precision Medicine Nation. Hastings Center Report, 2017. [PubMed] (Hastings Cent Rep. 2017 Jul;47(4):19-29. doi: 10.1002/hast.736.) | Journal Article |
Klitzman, R. et al. Psychiatrists’ views of the genetic bases of mental disorders and behavioral traits and their use of genetic tests. J. Nerv. Ment. Dis. 202, 530–8 (2014). [PubMed] |
Journal Article |
Henderson GE, Wolf SM, Kuczynski KJ, Joffe S, Sharp RR, Parsons DW, Knoppers BM, Yu JH, Appelbaum PS . The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations.. J Law Med Ethics, 42 (3):344-55. 2014. [SAGE] | Journal Article |
Appelbaum, P. S. et al. Models of Consent to Return of Incidental Findings in Genomic Research. Hastings Cent. Rep. 44, 22–32 (2014). [PubMed] |
Journal Article |
Oberg, J. A. et al. Overcoming challenges to meaningful informed consent for whole genome sequencing in pediatric cancer research. Pediatr. Blood Cancer 62, 1374–80 (2015). [PubMed] |
Journal Article |
Parens, E. Drifting Away from Informed Consent in the Era of Personalized Medicine. Hastings Cent. Rep. 45, 16–20 [PubMed] |
Journal Article |
Schiffman, J., Lawrence, R. E., Demro, C., Appelbaum, P. S., & Dixon, L. B. (2016). Attitudes towards cannabis use and genetic testing for schizophrenia. Early Interv Psychiatry, 10(3), 220-226. doi:10.1111/eip.12164 [PubMed] |
Journal Article |
De Vries, R. et al. Public’s approach to surrogate consent for dementia research: cautious pragmatism. Am. J. Geriatr. Psychiatry 21, 364–72 (2013). [PMC] |
Journal Article |
Appelbaum, P. S. et al. Models of Consent to Return of Incidental Findings in Genomic Research. Hastings Cent. Rep. 44, 22–32 (2014). [PubMed] |
Journal Article |
Klitzman, R. et al. Researchers’ views on return of incidental genomic research results: qualitative and quantitative findings. Genet. Med. 15, 888–95 (2013). [PubMed Central] |
Journal Article |
Palmer, B. W. et al. Neuropsychological correlates of capacity determinations in Alzheimer disease: implications for assessment. Am. J. Geriatr. Psychiatry 21, 373–81 (2013). [PMC] |
Journal Article |
Klitzman, R., Toynbee, M. & Sauer, M. V. Controversies concerning mitochondrial replacement therapy. Fertil. Steril. 103, 344–6 (2015). [PubMed] |
Journal Article |
Appelbaum, P. S. et al. Models of Consent to Return of Incidental Findings in Genomic Research. Hastings Cent. Rep. 44, 22–32 (2014). [PubMed] |
Journal Article |
Klitzman, R. et al. Researchers’ views on return of incidental genomic research results: qualitative and quantitative findings. Genet. Med. 15, 888–95 (2013). [PubMed Central] |
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 |
Plaetke R., Thompson I., Sarosdy M., Harris J.M., Troyer D., Arar, N.H. "Genetic fieldwork for hereditary prostate cancer studies." Urologic Oncology. 2002; 7(1): 19-27. [PubMed] |
Journal Article |
Arar N.H., Plaetke R., Arar M.Y. et al. "Incorporating the Contextual Assessment Approach to regimens used in genetic family studies." Genetics in Medicine. 2002; 4(6): 451-63. [PubMed] |
Journal Article |
Arar N.H., Hazuda H.P., Plaetke R. et al. "Familial Clustering of Diabetic Nephropathy: Perceptions and Risk Recognition Among Mexican-American Patients With a Family History of Diabetes." Diabetes Spectrum. 2003; 16(3): 136-142. |
Journal Article |
Peters, N., Rose, A., Armstrong, K. "The Association between Race and Attitudes about Predictive Genetic Testing." Cancer Epidemiology Biomarkers & Prevention . 2004; 13(3): 361-5. [PubMed] |
Journal Article |
Burton SK, Blanton SH, Culpepper B, White KR, Pandya A, Nance WE, Arnos KS . Education in the genetics of hearing loss: A survey of early hearing detection and intervention programs. Genet Med, 8 (8):510-7. 2006. [PubMed] | Journal Article |
Arnos KS, Della Rocca MG, Karchmer MA, Culpepper B, Cohn WF . Genetics Content in the Graduate Audiology Curriculum: A Survey of Academic Programs. Am J Audiol, 13 (2):126-134. 2004. [PubMed] | Journal Article |
Aronowitz RA. Do not delay: Great cancer and Time, 1900-1970. Milbank Quarterly, 79(3):355-386. 2001. [PubMed] |
Journal Article |
Aronowitz RA. An Unnatural History of Breast Cancer. Cambridge University Press. 2007. |
Book |
Aronowitz, RA. The dilemma of genetic testing: the "breast cancer gene" and the physician's role, as ethics case study. ACP Observer, 18(3):1. 1998. |
Journal Article |
Wailoo, Keith; Nelson, Alondra; Lee, Catherine . Genetics and the Unsettled Past: The Collision of DNA, Race, and History. 2012. | Book |
Asch, D. et al. "Reporting the Results of Cystic Fibrosis Carrier Screening." American Journal of Obstetrics and Gynecology. 1993: 168(1, Part 1); 1-6. [PubMed] |
Journal Article |
Asch, D. et al. "Clarification Needed to Cystic Fibrosis Model." American Journal of Obstetrics and Gynecology. 1993; 168; 1358-9. [PubMed] |
Journal Article |
Asch, D.A., J.C. Hershey, M.L. DeKay et al. "Carrier Screening for Cystic Fibrosis: Costs and Clinical Outcomes." Medical Decision Making. 1998; 18(2): 202-12. [PubMed] |
Journal Article |
Asch, D. and J.C. Hershey. "Why Some Health Policies Don't Make Sense at the Bedside." Annals of Internal Medicine. 1995; 122(11): 846-50. [PubMed] |
Journal Article |
Asch, D. et al. "Genetic Screening for Reproductive Planning: Methodological and Conceptual Issues in Policy Analysis." American Journal of Public Health. 1996; 86(5): 684-90. [PubMed] |
Journal Article |
Armstrong K, Weber B, FitzGerald G et al. Life insurance and breast cancer risk assessment: adverse selection, genetic testing decisions, and discrimination. Am J Med Genet A, 12A (3):359-64. 2003. [PubMed] | Journal Article |
Armstrong K, Weiner J, Weber B, Asch DA . Early adoption of BRCA1/2 testing: who and why. Genet Med, 5 (2):92-8. 2003. [PubMed] | Journal Article |
Corbie-Smith G, Moody-Ayers S, Thrasher A. Closing the circle: Minority inclusion in research and reduction of health disparities. Archives of Internal Medicine, 164(13):1362-4. 2004. [PubMed] |
Journal Article |
Van Riper M. Genetic testing and the family. Journal of Midwifery and Women's Health, 50: 227-233. 2005. [PubMed] |
Journal Article |
Van Riper M. Ethical, legal, and social implications. In M.S. Runge & W.C. Patterson (Eds.), Principles of molecular medicine. Pp. 61-68). Totowa, NJ: Humana Press Inc. 2006. |
Book Chapter |
Whitmarsh I, Davis AM, Skinner D, Bailey DB. A place for genetic uncertainty: Parents valuing an unknown in the meaning of disease. Social Science & Medicine, 65:1082-1093. 2007. [PubMed] |
Journal Article |
Rothschild BB, Estroff SE, Churchill LR. The cultural calculus of consent. Clinical Obstetrics and Gynecology, 48(3), 574-94. 2005. [PubMed] |
Journal Article |
Bailey D, Armstrong D, Kemper A, Skinner D, Warren S. Supporting family adaptation to pre-symptomatic and "untreatable" conditions in an era of expanded newborn screening. Journal of Pediatric Psychology. [PubMed] [PubMed] |
Journal Article |
Bailey DB, Beskow LM, Davis AM, Skinner D. Changing Perspectives on the Benefits of Newborn Screening. Mental Retardation and Developmental Disabilities Research Reviews, 12:270-279. 2006. [PubMed] |
Journal Article |
Whitmarsh I . Hyperdiagnostics: postcolonial utopics of race-based biomedicine. Med Anthropol, 28 (3):285-315. 2009. [PubMed] | Journal Article |
Whitmarsh I ed. Biomedical ambiguity: Race, asthma, and the contested meaning of genetic research in the Caribbean. Ithaca, NY: Cornell University Press 225. 2008. | Book |
Van Riper M . Family nursing in the era of genomic health care: we should be doing so much more!. J Fam Nurs, 12 (3):111-8. 2006. [PubMed] | Journal Article |
Torke, A. M., Corbie-Smith, G. M., & Branch, W. T. (2004). African American patients’ perspectives on medical decision making. Archives of Internal Medicine, 164(5), 525–30. Retrieved from http://archinte.jamanetwork.com/article.aspx?articleid=216784 [JAMA Internal Medicine] |
Journal Article |
Corbie-Smith G, Blumenthal C, Henderson GE, Garrett J, Bussey-Jones J, Moloney ME, Sandler RS, Williams Lloyd S, Dorrance J, Darter J . Studying genetic research participants: lessons from the "Learning About Research in North Carolina" study. Cancer Epidemiol Biomarkers Prev, 17 (8):2019-24. 2008. [PubMed] | Journal Article |
Van Riper M, Gallo A eds Crane D, Marshall E. Handbook of Families and Health: Interdisciplinary Perspectives. Thousand Oaks: Sage Publications Inc. 544. 2005. | Book |
Evans JP . Health care in the age of genetic medicine. Genet Med, 10 (1):1-3. 2008. [PubMed] | Journal Article |
Sterling, R., Henderson, G. E. & Corbie-Smith, G. Public willingness to participate in and public opinions about genetic variation research: a review of the literature. Am. J. Public Health 96, 1971–8 (2006). [PubMed] |
Journal Article |
Sterling, R. The on-line promotion and sale of nutrigenomic services. Genet. Med. 10, 784–96 (2008). [PubMed] |
Journal Article |
Skinner, D. & Weisner, T. T. S. Sociocultural studies of families of children with intellectual disabilities. Ment. Retard. Dev. Disabil. Res. Rev. 13, 302–12 (2007). [Wiley Online Library] |
Journal Article |
Skinner, D. & Schaffer, R. Families and Genetic Diagnoses in the Genomic and Internet Age. Infants Young Child. 19, 16–24 (2006). [ELSI Publications] |
Journal Article |
Henderson GE, Easter MM, Zimmer C, King NMP, Davis A, Rothschild B, Churchill L, Wilfond B, Nelson D. Therapeutic misconception in early phase gene transfer trials. Social Science and Medicine, 62: 239-53. 2006. [PubMed] |
Journal Article |
King NMP. Genes and TS: What will they tell us? Scientific, ethical, and social implications. In Walkup, J. (ed.): AIN: Tourette Syndrome. Lippincott Williams & Wilkins. 2006. |
Book Chapter |
Bailey D, Skinner D, Davis A, Whitmarsh I, Powell C. Concerns about expanded newborn screening: Fragile X syndrome as a prototype for emerging issues. Pediatrics, 121(3):693-704. 2008 [PubMed] |
Journal Article |
Bailey DB, Skinner D, Warren SR. Newborn Screening for Developmental Disabilities: Reframing Presumptive Benefit. American Journal of Public Health, 95(11):1889-1893. 2005. [PubMed] |
Journal Article |
Henderson, G. et al. Great expectations: views of genetic research participants regarding current and future genetic studies. Genet. Med. 10, 193–200 (2008). [PubMed] |
Journal Article |
Henderson, G. E. et al. Clinical trials and medical care: defining the therapeutic misconception. PLoS Med. 4, 4 (2007). [PubMed Central] |
Journal Article |
King, N. M. P. and L. Churchill (2008). "Assessing and comparing potential benefits and risks of harm." The Oxford Textbook of Clinical Research Ethics: 514-526. [ResearchGate] |
Book Chapter |
Kompoliti, K. (2006). "Advances in Neurology, Volume 99: Tourette Syndrome." 67(9): 1727-1728. [Neurology] |
Book Chapter |
Kemper, A. R. A. & Bailey, D. J. D. B. Pediatricians’ knowledge of and attitudes toward fragile X syndrome screening. Acad. Pediatr. 9, 114–7 (2009). [PubMed] |
Journal Article |
Jr, D. B., Skinner, D. & Davis, A. Ethical, legal, and social concerns about expanded newborn screening: fragile X syndrome as a prototype for emerging issues. Pediatrics 121, e693 –e704 (2008). [Pediatrics Publication] |
Journal Article |
Illes, J. “Pandora”s box’ of incidental findings in brain imaging research. Nat. Clin. Pract. Neurol. 2, 60–1 (2006). [PubMed] |
Journal Article |
Van Riper M, Gallo A. Family, health, and genomics. In DR Crane & ES Marshall (Eds.), Handbook of families and health: Interdisciplinary perspectives. Thousand Oaks: Sage Publications Inc. 2005. |
Book Chapter |
King, N. M. P. (2007). "The glass house: Assessing bioethics." The Ethics of Bioethics: Mapping the Moral Landscape: 297-309. [ResearchGate] |
Book Chapter |
Barata LP, Starks H, Kelley M, Kuszler P, Burke W. What DNA Can and Cannot Say: Perspectives of Immigrant Families about the Use of Genetic Testing in Immigration. Stanford law & policy review. 2015;26:597-638. |
Journal Article |
Chase GA, Geller G, Havstad SL, Holtzman NA, Bassett SS . Physicians' propensity to offer genetic testing for Alzheimer's disease: Results from a survey. Genet Med, 4 (4):297-303. 2002. [PubMed] | Journal Article |
Munday F . Bioethics and teaching: relations and contributions?. J Int Bioethique, 2013. [PubMed] (J Int Bioethique. 2013 Jun-Sep;24(2-3):11-3, 15-6.) | Journal Article |
Rennie S. Ethical use of antiretroviral resources for HIV prevention in resource poor settings. Dev World Bioeth. 2013 Aug;13(2):79-86 [PubMed] |
Journal Article |
Tshikala T, Mupenda B, Dimany P, Malonga A, Ilunga V, Rennie S. . Engaging with research ethics in central Francophone Africa: reflections on a workshop about ancillary care.. Philos Ethics Humanit Med, 2012. [PubMed] (Philos Ethics Humanit Med. 2012 Aug 6;7:10.) | Journal Article |
Rennie S, Mupenda B . The Ethics of Globalizing Bioethics.. Ethics Biol Eng Med., 2011. [PubMed] (Ethics Biol Eng Med. 2011;2(2):147-156.) | Journal Article |
Rennie S. . Viewing research participation as a moral obligation: in whose interests?. Hastings Cent Rep., 2011. [PubMed] (Hastings Cent Rep. 2011 Mar-Apr;41(2):40-7.) | Journal Article |
Rennie S, Turner AN, Mupenda B, Behets F. . Conducting unlinked anonymous HIV surveillance in developing countries: ethical, epidemiological, and public health concerns.. PLoS Med., 2009. [PubMed] (PLoS Med. 2009 Jan 20;6(1):e4. doi: 10.1371/journal.pmed.1000004.) | Journal Article |
Rennie S, Mupenda B. . Ethics of mandatory premarital HIV testing in Africa: the case of Goma, Democratic Republic of Congo.. Dev World Bioeth., 2008. [PubMed] (Dev World Bioeth. 2008 Aug;8(2):126-37.) | Journal Article |
Rennie S, Mupenda B. . Living apart together: reflections on bioethics, global inequality and social justice.. Philos Ethics Humanit Med., 2008. [PubMed] (Philos Ethics Humanit Med. 2008 Dec 7;3:25. doi: 10.1186/1747-5341-3-25.) | Journal Article |
Mupenda B, Duvall S, Maman S, Pettifor A, Holub C, Taylor E, Rennie S, Kashosi M, Lema M, Behets F. . Terms used for people living with HIV in the Democratic Republic of the Congo. Qual Health Res., 2014. [PubMed] (Qual Health Res. 2014 Feb;24(2):209-16. doi: 10.1177/1049732313519869. Epub 2014 Jan 24.) | Journal Article |
Last updated: January 24, 2019