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.
Bailey, DB, Armstrong, D, Kemper, AR, Skinner, D, Warren, SF. Supporting Family Adaptation to Presymptomatic and "Untreatable" Conditions in an Era of Expanded Newborn Screening. Journal of Pediatric Psychology, 34(6):648-661. 2009. [PubMed] |
Journal Article |
Skinner D, Weisner T. Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13:302-312. [PubMed] |
Journal Article |
Bolnick, D. A. et al. Genetics. The science and business of genetic ancestry testing. Science (80-. ). 318, 399–400 (2007). [PubMed] |
Journal Article |
Anne C. Wheeler, Debra G. Skinner, Donald B. Bailey, and Leonard Abbeduto (2008) Perceived Quality of Life in Mothers of Children With Fragile X Syndrome. American Journal on Mental Retardation: May 2008, Vol. 113, No. 3, pp. 159-177. [PubMed] |
Journal Article |
Holtzclaw Williams, P. Policy framework for rare disease health disparities. Policy. Polit. Nurs. Pract. 12, 114–8 (2011). [PubMed] |
Journal Article |
Wagner, J. K., Cooper, J. D., Sterling, R., & Royal, C. D. (2012). Tilting at windmills no longer: a data-driven discussion of DTC DNA ancestry tests. Genetics in Medicine, 14(6), 586–93. doi:10.1038/gim.2011.77 [PubMed] |
Journal Article |
Cadigan, R Jean; Butterfield, Rita; Rini, Christine; Waltz, Margaret; Kuczynski, Kristine J; Muessig, Kristin; Goddard, Katrina AB; Henderson, Gail E . Online Education and e-Consent for GeneScreen, a Preventive Genomic Screening Study.. Medline, 20 (4):235-246. 2017. [PubMed ] | Journal Article |
Boyer GJ, Whipple W, Cadigan RJ, Henderson GE . Biobanks in the United States: How to identify an undefined and rapidly evolving population. Biopreserv Biobank, 10 (6):511-17. 2012. [PubMed] | Journal Article |
Henderson, G. E., Juengst, E. T., King, N. M. P., Kuczynski, K. & Michie, M. What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011. J. Law, Med. Ethics 40, 1008–24 (2012). [PubMed] |
Journal Article |
Schaffer, R. et al. Parents’ online portrayals of pediatric treatment and research options. J. Empir. Res. Hum. Res. Ethics 4, 73–87 (2009). [PubMed Central] |
Journal Article |
Henderson, G. E. et al. Characterizing biobank organizations in the U.S.: results from a national survey. Genome Med. 5, 3 (2013). [PubMed Central] |
Journal Article |
Cadigan, R. J., et al. (2011). ""That's a good question": university researchers' views on ownership and retention of human genetic specimens." Genet Med 13(6): 569-575. [PubMed] [PubMed] |
Journal Article |
Henderson, G. E. Is informed consent broken? Am. J. Med. Sci. 342, 267–72 (2011). [PubMed] |
Journal Article |
Cadigan RJ, Michie M, Henderson G, Davis AM, Beskow LM . The meaning of genetic research results: reflections from individuals with and without a known genetic disorder. J Empir Res Hum Res Ethics, 6 (4):30-40. 2011. [PubMed] | Journal Article |
Morrissey, C. & Walker, R. L. Funding and Forums for ELSI Research: Who (or What) is Setting the Agenda? AJOB Prim. Res. 3, 51–60 (2012). [PubMed Central] |
Journal Article |
Cadigan RJ, Dragana L, Haldeman K, Conlon I, Reavely E, Henderson GE . Neglected ethical issues in biobank management: Results from a U.S. Study. Life Sci Soc Policy, 9 (1):1-13. 2013. [Full Text] | Journal Article |
Michie, M. & Skinner, D. Narrating disability, narrating religious practice: reconciliation and fragile X syndrome. Intellect. Dev. Disabil. 48, 99–111 (2010). [PubMed Central] |
Journal Article |
Conley, J. M., et al. (2012). "A trade secret model for genomic biobanking." J Law Med Ethics 40(3): 612-629. [PubMed] [PubMed] |
Journal Article |
Prince, A. E. R. & Roche, M. I. Genetic Information, Non-Discrimination, and Privacy Protections in Genetic Counseling Practice. J. Genet. Couns. (2014). doi:10.1007/s10897-014-9743-2 [PubMed] |
Journal Article |
Dressler LG. . Return of research results from pharmacogenomic versus disease susceptibility studies: what's drugs got to do with it?. Pharmacogenomics, 13 (8):935-49. 2012. [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 |
Easter, M. M. (2012). ""Not all my fault": genetics, stigma, and personal responsibility for women with eating disorders." Soc Sci Med 75(8): 1408-1416. [PubMed] [PubMed] |
Journal Article |
Conley JM, Lázaro-Muñoz G, Prince AE, Davis AM, Cadigan RJ . Scientific Social Responsibility: Lessons From the Corporate Social Responsibility Movement.. Am J Bioeth, 15 (12):64-6. 2015. | Journal Article |
King NMP, Henderson GE , Churchill LR et al. "Consent Forms and the Therapeutic Misconception: The Example of Gene Transfer Research." IRB: Ethics and Human Research [PubMed]. [PubMed] |
Journal Article |
Churchill LR., Nelson DK, Henderson GE et al. "Assessing Benefits in |
Journal Article |
Henderson, G. E., Davis, A. M. & King, N. M. P. Vulnerability to influence: a two-way street. Am. J. Bioeth. AJOB 4, 50–2; discussion W32 (2004). [Taylor & Francis Online] |
Journal Article |
Churchill, L. R. in Stories Matter Role Narrat. Med. Ethics (Charon, R. & Montello, M.) 183–195 (Routledge, 2002). |
Book Chapter |
King NMP. "RAC Oversight of Gene Transfer Research: A Model Worth |
Journal Article |
Henderson, G. E. & King, N. M. P. Perceived Benefits of Participation in Gene Transfer Research. HemAware 7, 73–75 (2002). |
Journal Article |
Easter MM, Davis AM, Henderson GE. "Confidentiality: More than a |
Journal Article |
Schaffer, R. et al. Parents’ online portrayals of pediatric treatment and research options. J. Empir. Res. Hum. Res. Ethics 4, 73–87 (2009). [PubMed Central] |
Journal Article |
Henderson, G. E., Juengst, E. T., King, N. M. P., Kuczynski, K. & Michie, M. What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011. J. Law, Med. Ethics 40, 1008–24 (2012). [PubMed] |
Journal Article |
Henderson, G. E. et al. Uncertain benefit: investigators’ views and communications in early phase gene transfer trials. Mol. Ther. 10, 225–31 (2004). [PubMed] |
Journal Article |
Henderson, G. E. Is informed consent broken? Am. J. Med. Sci. 342, 267–72 (2011). [PubMed] |
Journal Article |
Hilgartner, S. and S.I. Brandt-Rauf. "Data Access, Ownership, and Control: Toward Empirical Studies of Access Practices." Knowledge: Creation, Diffusion, Utilization. June 1994: 15(4): 355-372. [Full Text] |
Journal Article |
Hilgartner, S. in Intellect. Prop. Res. Tools Mol. Biol. Rep. a Work. (National Academy of Sciences) 28–39 (National Academy Press, 1997). |
Book Chapter |
Stemerding, D. & Hilgartner, S. in Get. New Technol. Together Stud. Mak. Sociotechnical Order (De Gruyter Stud. Organ. , No 82) (Disco, C. & van der Meulen, B.) 39–52 (Aldine de Gruyter, 1998). |
Book Chapter |
Hilgartner, S. "Biomolecular Databases: New Communication Regimes for Biology?" Science Communication. December 1995: 17(2): 240-263. [Full Text] |
Journal Article |
Hilgartner, S. in Handb. Sci. Technol. Stud. (Jasanoff, S., Markle, G. E., Peterson, J. C. & Pinch, T. J.) 302–316 (Sage Publications, Inc., 1995). |
Book Chapter |
Hilgartner, S. "Data Access Policy in Genome Research." In : Private Science, A. Thackray, Ed. University of Pennsylvania Press, April 1998. 304p. |
Book Chapter |
Stemerding D, Hilgartner S . Getting New Technologies Together: Studies in Making Sociotechnical Order (De Gruyter Studies in Organization, No 82). Hawthorne, NY: Aldine de Gruyter 39-52. 1998. | Book |
Hilgartner S . The Human Genome Project. Thousand Oaks, CA: Sage Publications, Inc. 302-316. 1995. | Book |
Hoffmann, D. E., Fortenberry, J. D. & Ravel, J. Are changes to the common rule necessary to address evolving areas of research? A case study focusing on the human microbiome project. J. Law. Med. Ethics 41, 454–69 (2013). [PubMed] |
Journal Article |
Hoffmann, D. E. et al. Probiotics: Achieving a Better Regulatory Fit. (2014). at [SSRN] |
Journal Article |
Hoffmann, D. E. Health claim regulation of probiotics in the USA and the EU: is there a middle way? Benef. Microbes 4, 109–15 (2013). [PubMed] |
Journal Article |
Hoffman, L., Ed. Proceedings of the Second Conference on Computers, Freedom, and Privacy. New York: Association for Computing Machinery, Inc., 1993. |
Journal Article |
Ginsburg G, Willard H Eds. Genomic and Personalized Medicine, Vol. 1. Waltham, MA: Academic Press 102-22. 2013. | Book |
Green RC, Berg JS, Grody WW, Kalia SS, Korf BR, Martin CL, McGuire AL, Nussbaum RL, O'Daniel JM, Ormond KE, Rehm HL, Watson MS, Williams MS, Biesecker LG; American College of Medical Genetics and Genomics . ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genet Med, 15 565-74. 2013. [PubMed] | Journal Article |
McGuire, A. L. et al. Point-counterpoint. Ethics and genomic incidental findings. Science (80-. ). 340, 1047–8 (2013). [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 |
Christensen KD, Savage SK, Huntington NL, Weitzman ER, Ziniel SI, Bacon PL, Cacioppo CN, Green RC, Holm IA. . Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples.. J Empir Res Hum Res Ethics, 12 (2):97-106. 2017. [PubMed] | 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 |
Holm, I. A. et al. Guidelines for return of research results from pediatric genomic studies: deliberations of the Boston Children’s Hospital Gene Partnership Informed Cohort Oversight Board. Genet. Med. 16, 547–52 (2014). [PubMed] |
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 |
Burke, W. et al. Recommendations for returning genomic incidental findings? We need to talk! Genet. Med. 15, 854–9 (2013). [PubMed Central] |
Journal Article |
Kenen, R. "Women and Genetics in Contemporary Society (WAGICS) Workshop." National Women's Health Network News (forthcoming) |
Book |
Mahowald, M. Feminist Fashion in Genetics: The WAGICS Workshop in Zanesville. Newsl. Netw. Fem. Approaches to Bioeth. 4, 3 (1996). [Full Text] |
Journal Article |
Johnson, A. Ethics and Genetics. VHL Fam. Forum 4, 10 (1996). [Full Text] |
Journal Article |
Holtzman, N.A. "The Diffusion of New Genetic Tests for Predicting Future Disease." FASEB Journal. 1992: 6; 2806-2812. [PubMed] |
Journal Article |
Geller, G., E.S. Tambor, G.A. Chase et al. "Measuring Physicians' Tolerance for Ambiguity and its Relationship to Their Reported Practices Regarding Genetic Testing." Medical Care. 1993: 31(11); 989-1001. [PubMed] |
Journal Article |
Geller, G. and N.A. Holtzman. "Implications of the Human Genome Initiative for the Primary Care Physician." Bioethics. 1991: 5(4); 318-325. [PubMed] |
Journal Article |
Geller, G., B.A. Bernhardt, K. Helzlsouer et al. "Informed consent and BRCA1 testing." (Correspondence) Nature Genetics. December 1995; 11: 364. [PubMed] |
Journal Article |
Holtzman N.A., Andrews L. "Ethical and legal issues in genetic epidemiology." Epidemiologic Reviews. 1997; 19: 163-174. |
Journal Article |
Geller, G. and N.A. Holtzman. "A Qualitative Assessment of Primary Care Physicians' Perceptions About the Ethical and Social Implications of Offering Genetic Testing." Qualitative Health Research. February 1995: 5(1); 97-116. [Full Text] |
Journal Article |
Doksum T, Bernhardt BA, Holtzman NA . Does knowledge about the genetics of breast cancer differ between nongeneticist physicians who do or do not discuss or order BRCA testing?. Genet Med, 5 (2):99-105. 2003. [PubMed] | Journal Article |
Doksum T, Bernhardt BA, Holtzman NA . Carrier screening for cystic fibrosis among Maryland obstetricians before and after the 1997 NIH Consensus Conference. Genet Test, 5 (2):111-6. 2001. [PubMed] | Journal Article |
Geller G, Tambor ES, Chase GA, Hofman KJ, Faden RR, Holtzman NA . Incorporation of genetics in primary care practice. Will physicians do the counseling and will they be directive?. Arch Fam Med, 2 (11):119-25. 1993. [PubMed] | Journal Article |
Tambor, E. S. et al. Improving response rates through incentive and follow-up: the effect on a survey of physicians’ knowledge of genetics. Am. J. Public Health 83, 1599–603 (1993). [PubMed] |
Journal Article |
Geller, G., E.S. Tambor, B.A. Bernhardt et al. "Physicians' Attitudes toward Disclosure of Genetic Information to Third Parties." The Journal of Law, Medicine & Ethics. Summer 1993: 21(2); 238-240. [PubMed] |
Journal Article |
Holtzman, N. A. Promoting Safe and Effective Genetic Tests in the United States: Work of the Task Force on Genetic Testing. Clin. Chem. 45, 732–738 (1999). [Clinical Chemistry] |
Journal Article |
Holtzman, N. A. Benefits and risks of emerging genetic technologies: the need for regulation. Clin. Chem. 40, 1652–7 (1994). [PubMed] |
Journal Article |
Holtzman, N. A. Are we ready to screen for inherited susceptibility to cancer? Oncology (Williston Park). 10, 57–64; discussion 67 (1996). [PubMed] |
Journal Article |
Holtzman, N. A. Primary care physicians as providers of frontline genetic services. Fetal Diagn. Ther. 8 Suppl 1, 213–9 (1993). [PubMed] |
Journal Article |
Holtzman, N. A. Discovery, transfer, and diffusion of technologies for the detection of genetic disorders. Policy implications. Int. J. Technol. Assess. Health Care 10, 562–72 (1994). [PubMed] |
Journal Article |
Holtzman, N. A. Eugenics and genetic testing. Sci. Context 11, 397–417 (1998). [PubMed] |
Journal Article |
Hofman, K. J. et al. Physicians’ knowledge of genetics and genetic tests. Acad. Med. 68, 625–32 (1993). [PubMed] |
Journal Article |
Holtzman, N. A. Medical and ethical issues in genetic screening--an academic view. Environ. Health Perspect. 104 Suppl , 987–90 (1996). [PubMed] |
Journal Article |
Faden, R.R. et al. "Attitudes of Physicians and Genetics Professionals Toward Cystic Fibrosis Carrier Screening." American Journal of Medical Genetics. 1994: 50(1); 1-11. [PubMed] |
Journal Article |
Cystic Fibrosis Carrier Testing: The Choice is Yours. (An educational videotape on cystic fibrosis testing). Baltimore: The Johns Hopkins University, 1992. |
Journal Article |
Tambor, E. S. et al. Offering cystic fibrosis carrier screening to an HMO population: factors associated with utilization. Am. J. Hum. Genet. 55, 626–37 (1994). [PubMed] |
Journal Article |
Myers, M.F., B.A. Bernhardt, E.S. Tambor and N.A. Holtzman. "Involving Consumers in the Development of an Educational Program for Cystic Fibrosis Carrier Screening." American Journal of Human Genetics. 1994: 54(4); 719-726. |
Journal Article |
Bernhardt, B.A., G.A. Chase, R.R. Faden et al. "Educating Patients About Cystic Fibrosis Carrier Screening in a Primary Care Setting." Archives of Family Medicine. 1996; 5: 336-340. [PubMed] |
Journal Article |
Holtzman, N. A. Benefits and risks of emerging genetic technologies: the need for regulation. Clin. Chem. 40, 1652–7 (1994). [PubMed] |
Journal Article |
Holup, J. L. et al. Performance of the U.S. Office of Management and Budget’s Revised Race and Ethnicity Categories in Asian Populations*. Int. J. Intercult. Relat. 31, 561–573 (2007). [PubMed Central] |
Journal Article |
IMAGN! Increasing Minority Awareness of Genetics Now! Conference Report. October 2004. Genetics & Public Policy Center. Johns Hopkins University. |
Book |
Platt, J., Bollinger, J., Dvoskin, R., Kardia, S. L. R. & Kaufman, D. Public preferences regarding informed consent models for participation in population-based genomic research. Genet. Med. (2013). doi:10.1038/gim.2013.59 [Nature] |
Journal Article |
Murphy, J. et al. Public expectations for return of results from large-cohort genetic research. Am. J. Bioeth. AJOB 8, 36–43 (2008). [PubMed Central] |
Journal Article |
Murphy, J. et al. Public perspectives on informed consent for biobanking. Am. J. Public Health 99, 2128–34 (2009). [PubMed Central] |
Journal Article |
Kaufman, D., Murphy, J., Scott, J. & Hudson, K. Subjects matter: a survey of public opinions about a large genetic cohort study. Genet. Med. 10, 831–9 (2008). [PubMed] |
Journal Article |
Kaufman, D., Murphy, J., Erby, L., Hudson, K. & Scott, J. Veterans’ attitudes regarding a database for genomic research. Genet. Med. 11, 329–37 (2009). [PubMed] |
Journal Article |
Kaufman, D. et al. Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinion. Am. J. Med. Genet. Part C Semin. Med. Genet. 148C, 31–9 (2008). [PubMed] |
Journal Article |
Kaufman, D. J., Murphy-Bollinger, J., Scott, J. & Hudson, K. L. Public opinion about the importance of privacy in biobank research. Am. J. Hum. Genet. 85, 643–54 (2009). [PubMed Central] |
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 |
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 |
Last updated: January 24, 2019