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.
Raspberry, K. A. & Skinner, D. Negotiating desires and options: how mothers who carry the fragile X gene experience reproductive decisions. Soc. Sci. Med. 72, 992–8 (2011). [PubMed Central] |
Journal Article |
King, N. M. P. The Ethics of Genetic Testing: Is More Always Better. N. C. Med. J. 68, 112–114 (2007). [PubMed] |
Journal Article |
Kaufman, J. S. Epidemiologic analysis of racial/ethnic disparities: some fundamental issues and a cautionary example. Soc. Sci. Med. 66, 1659–69 (2008). [PubMed] |
Journal Article |
Susswein, L. R. et al. Increased uptake of BRCA1/2 genetic testing among African American women with a recent diagnosis of breast cancer. J. Clin. Oncol. 26, 32–6 (2008). [PubMed] |
Journal Article |
Hayes, D. F. et al. HER2 and response to paclitaxel in node-positive breast cancer. N. Engl. J. Med. 357, 1496–506 (2007). [PubMed] |
Journal Article |
Skinner, D. (2008). Interdisciplinary research. In L. Given (Ed.), The SAGE encyclopedia of qualitative research methods (pp. 447-450). Thousand Oaks, CA: Sage. |
Book Chapter |
Nelson, D. K. et al. Obtaining consent from both parents for pediatric research: what does “reasonably available” mean? Pediatrics 131, e223–9 (2013). [PubMed] |
Journal Article |
Kaufman, J. S. & Cooper, R. S. Race in epidemiology: new tools, old problems. Ann. Epidemiol. 18, 119–23 (2008). [PubMed] |
Journal Article |
Van Riper M. Families of children with Down syndrome: Responding to a "change of plans" with resilience. Journal of Pediatric Nursing, 22:116-128. 2007 [PubMed] |
Journal Article |
Sobo E, Kurtin P . Optimizing Care for children with Special Health Care Needs in Their Early Years. Baltimore, MD: Brookes Publishing Co 352. 2007. | Book |
Kaufman J, Cooper R . Use of Racial and Ethnic Identity in Medical Evaluations and Treatments. In Whitmarsh I, Jones DS What's the Use of Race?: Modern Governance and the Biology of Difference. Boston, MA: The MIT Press. 277. 2010. | Book Chapter |
Van Riper, M. in Matern. Women’s Heal. Care (Lowdermilk, D. L. & Perry, S. E.) (Elsevier Health Sciences, 2007). |
Book Chapter |
Skinner, D. et al. Parents’ decisions to screen newborns for FMR1 gene expansions in a pilot research project. Pediatrics 127, e1455–63 (2011). [PubMed] |
Journal Article |
Kaufman, J. S. Epidemiologic analysis of racial/ethnic disparities: some fundamental issues and a cautionary example. Soc. Sci. Med. 66, 1659–69 (2008). [PubMed Central] |
Journal Article |
Whitmarsh, I. Biomedical Ambiguity: Race, Asthma, and the Contested Meaning of Genetic Research in the Caribbean. 225 (Cornell University Press, 2008). |
Book |
Skinner D . The SAGE Encyclopedia of Qualitative Research Methods. Thousand Oaks, CA: Sage Publications Inc. 1072. 2008. | Book |
Berg, J. S. et al. An informatics approach to analyzing the incidentalome. Genet. Med. 15, 36–44 (2013). [PMC] |
Journal Article |
Corbie-Smith, G., et al. (2008). "Studying genetic research participants: lessons from the "Learning About Research in North Carolina" study." Cancer Epidemiol Biomarkers Prev 17(8): 2019-2024. [PubMed] [PubMed] |
Journal Article |
Bailey, D. B., Bishop, E., Raspa, M. & Skinner, D. Caregiver opinions about fragile X population screening. Genet. Med. 14, 115–21 (2012). [PMC] |
Journal Article |
Easter, M. M., et al. (2006). "The many meanings of care in clinical research." Sociol Health Illn 28(6): 695-712. [PubMed] |
Book Chapter |
Bailey, D. B. et al. Can a decision aid enable informed decisions in neonatal nursery recruitment for a fragile X newborn screening study? Genet. Med. 15, 299–306 (2013). [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 |
Dressler, L. G., Jones, S. S., Markey, J. M., Byerly, K. W. & Roberts, M. C. Genomics education for the public: perspectives of genomic researchers and ELSI advisors. Genet. Test. Mol. Biomarkers 18, 131–40 (2014). [PubMed] |
Journal Article |
Henderson GE, Mahoney D, Corneli A, Nelson DK, Mwansambo C. Applying research ethics guidelines: The view from a sub-Saharan research ethics committee. Journal of Empirical Research on Human Research Ethics, 2(2):41-48. 2007. [PubMed] |
Journal Article |
Berg, J. S. et al. Next generation massively parallel sequencing of targeted exomes to identify genetic mutations in primary ciliary dyskinesia: implications for application to clinical testing. Genet. Med. 13, 218–29 (2011). [PubMed] |
Journal Article |
Walker RL, Ivanhoe PJ . Working Virtue: Virtue Ethics and Contemporary Moral Problems. Oxford, UK: Oxford University Press 313. 2009. | Book |
Landsman, G. & Van Riper, M. in Optim. Care Child. with Spec. Heal. Care Needs Their Early Years (Sobo, E. J. & Kurtin, P. S.) (Brookes Publishing Co., 2007). |
Book Chapter |
Bolnick DA, Fullwiley D, Duster T, Cooper RS, Fujimura JH, Kahn J, Kaufman JS, Marks J, Morning A, Nelson A, Ossorio P, Reardon J, Reverby SM, TallBear K. The science and business of genetic ancestry testing. Science, 318:399-400. 2007. [PubMed] |
Journal Article |
Cuskelly, M., et al. (2009). "Families of children with Down syndrome: What we know and what we need to know." Down Syndrome Research and Practice 13. [ResearchGate] [Full Text] |
Journal Article |
Prince AE . TANTAMOUNT TO FRAUD?: EXPLORING NON-DISCLOSURE OF GENETIC INFORMATION IN LIFE INSURANCE APPLICATIONS AS GROUNDS FOR POLICY RESCISSION.. Health Matrix Clevel, 26 (1):255-307. 2016. [Scholarly Commons] | 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. et al. Characterizing biobank organizations in the U.S.: results from a national survey. Genome Med. 5, 3 (2013). [PubMed Central] |
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 |
Henderson, G, Garrett, J, Bussey-Jone, J, Moloney, ME, Blumenthal, C, Corbie-Smith, G. Great expectations: views of genetic research participants regarding current and future genetic studies. Genetics in Medicine. 10(3):193-200. 2008. [PubMed] |
Journal Article |
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 |
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 |
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 |
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 |
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 |
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 |
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. 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 |
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 |
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 |
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 |
Last updated: January 24, 2019