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.
Grody, W. et al. "PCR-Based Cystic Fibrosis (CF) Carrier Screening in a First-Year Medical Student Biochemistry Laboratory." American Journal of Human Genetics. 1993; 53: 1352-1355. [PubMed] |
Journal Article |
Grody, W. et al. "PCR-Based Screening for Cystic Fibrosis Carrier Mutations in an Ethnically Diverse Pregnant Population." American Journal of Human Genetics. 1997; 60: 935-947. [PubMed] |
Journal Article |
Grody, W. Cystic Fibrosis. (Education videotape on cystic fibrosis testing--English/Spanish). Los Angeles: The UCLA Cystic Fibrosis Project, 1992. |
Video |
Wackym, P. A., Kerner, M. M., & Grody, W. W. (1998). Molecular temporal bone pathology: III. Genotyping of the deltaF508 deletion in the DNA of patients with cystic fibrosis. The Laryngoscope, 108(8 Pt 2 Suppl 88), 1–3. Retrieved from http://onlinelibrary.wiley.com/doi/10.1097/00005537-199808001-00001/full [PubMed] |
Journal Article |
Venegas, P. B., Novak, J. M., Oscar, C. A., Sánchez, F. L., Gutiérrez, I. G., Rivera, J. M., … Grody, W. W. (2003). Cystic fibrosis mutations in Costa Rica. Human Biology, 75(2), 179–88. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/12943157 [PubMed] |
Journal Article |
Tatsugawa, Z. H., Fox, M. A., Fang, C. Y., Novak, J. M., Cantor, R. M., Bass, H. N., … Grody, W. W. (1994). Education and testing strategy for large-scale cystic fibrosis carrier screening. Journal of Genetic Counseling, 3(4), 279–289. doi:10.1007/BF01412373 [Full Text] |
Journal Article |
Abstracts of papers presented at the eleventh annual education conference. J. Genet. Couns. 1, 309–343 (1992). [Springer Link] |
Journal Article |
Guerrini, C. J., et al. (2018). "Citizen science, public policy." Science 361(6398): 134-136. [PubMed Central] |
Journal Article |
Kloza, E. M. & Haddow, P. K. Chances’ Choices. 208 (Foundation for Blood Research, 1997). at |
Book |
Haga, S. B., Tindall, G. & O’Daniel, J. M. Public perspectives about pharmacogenetic testing and managing ancillary findings. Genet. Test. Mol. Biomarkers 16, 193–7 (2012). [PubMed Central] |
Journal Article |
Haga, S. B., Tindall, G. & O’Daniel, J. M. Professional perspectives about pharmacogenetic testing and managing ancillary findings. Genet. Test. Mol. Biomarkers 16, 21–4 (2012). [PubMed Central] |
Journal Article |
Clayton, E. W. et al. Managing incidental genomic findings: legal obligations of clinicians. Genet. Med. 15, 624–9 (2013). [PubMed Central] |
Journal Article |
Moaddeb, J. & Haga, S. B. Pharmacogenetic testing: current evidence of clinical utility. Ther. Adv. Drug Saf. (2013). doi:10.1177/2042098613485595 [Sage Journals] |
Journal Article |
Haga, S. B., Kawamoto, K., Agans, R. & Ginsburg, G. S. Consideration of patient preferences and challenges in storage and access of pharmacogenetic test results. Genet. Med. 13, 887–90 (2011). [PubMed] |
Journal Article |
Haga, S. B., O’Daniel, J. M., Tindall, G. M., Lipkus, I. R. & Agans, R. Survey of US public attitudes toward pharmacogenetic testing. Pharmacogenomics J. 12, 197–204 (2012). [PubMed Central] |
Journal Article |
Haga, S. B., O’Daniel, J. M., Tindall, G. M., Lipkus, I. R. & Agans, R. Public attitudes toward ancillary information revealed by pharmacogenetic testing under limited information conditions. Genet. Med. 13, 723–8 (2011). [PubMed Central] |
Journal Article |
Haga, S. B. et al. Survey of genetic counselors and clinical geneticists’ use and attitudes toward pharmacogenetic testing. Clin. Genet. 82, 115–20 (2012). [PubMed] |
Journal Article |
Haga, S. B., Burke, W., Ginsburg, G. S., Mills, R. & Agans, R. Primary care physicians’ knowledge of and experience with pharmacogenetic testing. Clin. Genet. 82, 388–94 (2012). [PubMed] |
Journal Article |
Haga, S. B. & Burke, W. Practical ethics: establishing a pathway to benefit for complex pharmacogenomic tests. Clin. Pharmacol. Ther. 90, 25–7 (2011). [PubMed Central] |
Journal Article |
Hall, M.A. "When Genes are Decoded, Who Should See the Results." New York Times. February 29, 2000, at D7. |
Journal Article |
Hall, M.A. "Restricting Insurers' Use of Genetic Information: A Guide to Public Policy." N. Am. Actuarial Journal. January 1999; 3(1). |
Journal Article |
Mark A. Hall and Stephen S. Rich, "Genetic Privacy Laws and Patients' Fear of Discrimination by Health Insurers: The View from Genetic Counselors." Journal of Law, Medicine & Ethics. 2001; 28(3): 245-57. [PubMed] |
Journal Article |
Hall, M.A. "Legal Rules and Industry Norms: The Impact of Laws Restricting Health Insurers' Use of Genetic Information." Jurimetrics. 1999; 40: 93-122. |
Journal Article |
Hall, M. A. & Rich, S. S. Patients’ fear of genetic discrimination by health insurers: the impact of legal protection. Genet. Med. 2, 214–221 (2000). [PubMed] |
Journal Article |
Hall, M. A. Restricting Insurers’ Use of Genetic Information. North Am. Actuar. J. 3, 34–46 (1999). [Taylor & Francis Online] |
Journal Article |
Hall, M. A. & Rich, S. S. Laws restricting health insurers’ use of genetic information: impact on genetic discrimination. Am. J. Hum. Genet. 66, 293–307 (2000). [PubMed Central] |
Journal Article |
Hamilton, R., Williams, J. K., Bowers, B. J. & Calzone, K. Life trajectories, genetic testing, and risk reduction decisions in 18-39 year old women at risk for hereditary breast and ovarian cancer. J. Genet. Couns. 18, 147–59 (2009). [PubMed Central] |
Journal Article |
Hamilton, R. & Kopin, S. Theory Development From Studies With Young Women With Breast Cancer Who Are BRCA Mutation Negative. Adv. Nurs. Sci. 36, E41–E53 (2013). [Lippincott Williams & Wilkins] |
Journal Article |
Hamilton, R. & Hurley, K. E. Conditions and consequences of a BRCA mutation in young, single women of childbearing age. Oncol. Nurs. Forum 37, 627–34 (2010). [PubMed] |
Journal Article |
Hamilton, R. Nursing advocacy in a postgenomic age. Nurs. Clin. North Am. 44, 435–46 (2009). [PubMed Central] |
Journal Article |
Hamilton, R. Genetics: breast cancer as an exemplar. Nurs. Clin. North Am. 44, 327–38 (2009). [PubMed Central] |
Journal Article |
Newborn screening for cystic fibrosis. Proceedings from IVth International Conference, October 8-9, 1990, Colorado, USA. Pediatr. Pulmonol. Suppl. 7, 1–92 (1991) [PubMed] |
Journal Article |
Brothers KB, Holm IA, Childerhose JE, Antommaria AH, Bernhardt BA, Clayton EW, Gelb BD, Joffe S, Lynch JA, McCormick JB, McCullough LB, Parsons DW, Sundaresan AS, Wolf WA, Yu JH, Wilfond BS . When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority.. J Pediatr, 168 226-31. 2016. [ScienceDirect] | Journal Article |
Laurino MY, Truitt AR, Tenney L, Fisher D, Lindor NM, Veenstra D, Jarvik GP, Newcomb PA, Fullerton SM. . Clinical verification of genetic results returned to research participants: findings from a Colon Cancer Family Registry.. Mol Genet Gneomic Med, 5 (6):700-708. 2017. [PubMed] | Journal Article |
Hripcsak G, Mirhaji P, Low AF, Malin BA. . Preserving temporal relations in clinical data while maintaining privacy.. J Am Med Inform Assoc, 23 (6):1040-1045. 2016. [PubMed] | Journal Article |
Heath D. (1998) "Locating Genetic Knowledge: Picturing Marfan Syndrome and Its Traveling Constituencies." Science, Technology and Human Values. 23:1. |
Journal Article |
Heath, D., Koch, E., Ley, B. & Montoya, M. Nodes and Queries: Linking Locations in Networked Fields of Inquiry. Am. Behav. Sci. 43, 450–463 (1999). [Sage Journals] |
Journal Article |
Taussig K.S., Rapp R., Health D. (2003) "Flexible Eugenics." In A. Goodman, D. Health and S. Lindee, eds. Genetic Nature/Culture: Anthropology and Science Across the Two Culture Divide. Berkeley CA: University of California Press. |
Book Chapter |
Taussig K, Heath D, Rapp R . Genealogical Dis-Ease: Where Hereditary Abnormality Biomedical Explanation, and Family Responsibility Meet. In McKinnon S, Franklin SB Relative Values: Reconfiguring Kinship Studies. Durham, NC: Duke University Press. 536. 2002. | Book Chapter |
Rapp, R. Gender, body, biomedicine: how some feminist concerns dragged reproduction to the center of social theory. Med. Anthropol. Q. 15, 466–77 (2001). [PubMed] |
Journal Article |
Taussig K, Rapp R, Heath D . Genetic Nature/Culture: Anthropology and Science Beyond the Two-Culture Divide. Berkeley, CA: University of California Press 328. 2003. | Book |
Martin E, Oaks L, Taussig K-S, van der Straten A . Bodies, Antibodies and Modest Interventions: Works of Art in the Age of Cyborgian Reproduction. In Downey GL, Dumit J Cyborgs & Citadels: Anthropological Interventions in Emerging Sciences and Technologies (School of American Research Advanced Seminar Series). Sante Fe, NM: School of American Research. 328. 1998. | Book Chapter |
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 |
Henderson, G. (2008). "Introducing Social and Ethical Perspectives on Gene--Environment Research." Sociological Methods & Research - SOCIOL METHOD RES 37: 251-276Â [ResearchGate] [Full Text] |
Journal Article |
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 |
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 |
Davis AM, Hull SC , Grady C. et al. "The Invisible Hand in Clinical Research: The Study Coordinator's Critical Role in Human Subjects Protection." Journal of Law, Medicine & Ethics, vol. 30, no. 3 (Fall 2002): 411-419. [PubMed] |
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 |
Last updated: January 24, 2019