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.
Lee, SS. and Crawley, L. Research 2.0: Social Networking and DTC Genomics. American Journal of Bioethics, 9(6-7): 35-44. 2009. |
Journal Article |
Lee, SS. Ethical, Legal, Social & Regulatory Issues: Privacy/Confidentiality. In Principles of Pharmacogenetics and Pharmacogenomics. Editors: Russ Altman, David Flockhart and David Goldstein. Cambridge University Press. (February 29, 2012). 304p. |
Book Chapter |
Lee, SS. The Ethics of Nutrigenomics. Encyclopedia of Applied Ethics, Ed, Ruth Chadwick. Academic Press. 2 edition (January 24, 2012). 3500p. |
Book Chapter |
Lee SS-J. MEDICINE: The Politics of Hope--Dreaming in a Genomic Age. Science, 313(5795):1889-1890. 2006. |
Journal Article |
Koenig, B. A., Lee, S. S.-J. & Richardson, S. S. Revisiting Race in a Genomic Age. Revisiting Race a Genomic Age 394 (Rutgers University Press, 2008). |
Book Chapter |
Lee, S. S.-J. Biobanks of a ‘racial kind’: mining for difference in the new genetics. Patterns of Prejudice. Patterns Prejudice 40, 443–460 (2006). [Taylor & Francis Online] |
Journal Article |
Lee, SS, Bolnick, DB, Duster,T, Ossorio, P, and Tallbear, K. The Illusive Gold Standard in Genetic Ancestry Testing. Science, 325:38-39. 2009. [PubMed] |
Journal Article |
Lee, SS. Response to: The implications of population admixture in race-based drug prescription. Clinical Pharmacology and Therapeutics, 82(6):760. 2007. |
Journal Article |
Lee, SS. Racializing Drug Design: Pharmacogenomics and Implications for Health Disparities. American Journal of Public Health, 95(12):2133-2138. 2005. [PubMed] |
Journal Article |
Lee, SS. Personalized medicine and pharmacogenomics: ethical and social challenges. Personalized Med., 2(1):29-35. 2005. |
Journal Article |
Caulfield, T, Fullerton, SM, Ali-Khan, SE, Arbour, L, Burchard, EG, Cooper, RS, Hardy, BJ, Harry, S, Hyde-Lay, R, Kahn, J, Kittles, R, Koenig, BA, Lee, SS-J, Malinowski, M, Ravitsky, V, Sankar, P, Scherer, SW, Séguin, B, Shickle, D, Suarez-Kurtz, G, and Daar, AS. Race and Ancestry in Biomedical Research: Exploring the Challenges. Genome Medicine, 1(1):8.1-8.7. 2009. [PubMed Central] |
Journal Article |
Lee, S.S. "Paradoxes of Difference." Book Review/Science in the Media. PLOS Biology. 2004; 2(9): e263. [PubMed Central] |
Journal Article |
Lee, SS and Koenig, BA. Racial Profiling of DNA Samples: Will it Affect Scientific Knowledge About Genetic Variation. Bertha Knoppers, Ed. Populations and Genetics: Legal and Socio-Ethical Perspectives. Leiden: Martinus Nijhoff Publishers. 2003; 231-244. |
Book Chapter |
Lee, S. S.-J., Mountain, J. & Koenig, B. A. in Soc. Med. Reader, Second Ed. Vol. Two Soc. Cult. Contrib. to Heal. Differ. Inequal. (Henderson, G. E. et al.) 218–251 (Duke University Press, 2005). |
Book Chapter |
Lee, SS, Mudaliar A. Racing Forward: the Genomics and Personalized Medicine Act. Science, 323(5912):342. 2009. [PubMed] |
Journal Article |
Lee, S. S.-J. in Fram. Choice Predict. Genet. Test. Asia (Sleeboom-Faulkne, M.) 211–222 (Amsterdam University Press, 2010). |
Book Chapter |
Lee SS-J. The Ethical Implications of Stratifying by Race in Pharmacogenomics. Clinical Therapeutics and Pharmacology 81(1):122-125. 2007. [PubMed] |
Journal Article |
Marc D. Schwartz, Beth N. Peshkin, Chanita Hughes, David Main, Claudine Isaacs, and Caryn Lerman. "Impact of BRCA1/BRCA2 Mutation Testing on Psychologic Distress in a Clinic-Based Sample." Journal of Clinical Oncology. January 15 2002: 514-520. |
Journal Article |
DeMarco, T. A., et al. (2001). "Across the Spectrum: Case Studies in Genetic Counseling for Breast and Ovarian Cancer." J Genet Couns 10(5): 379-395. [PubMed] [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 |
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 |
Claudine Isaacs, Beth N. Peshkin, Marc Schwartz, Tiffani A. DeMarco, David Main, Caryn Lerman. "Breast and Ovarian Cancer Screening Practices in Healthy Women with a Strong Family History of Breast or Ovarian Cancer." Breast Cancer Research and Treatment. January 2002; 71(2):103-112. [PubMed] |
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 |
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 |
"Medicine at the Crossroads: Conceiving the Future." New York: WNET/Thirteen, 1990. (8 part video series.) |
Video |
Zoltick ES, Linderman MD, McGinniss MA, Ramos E, Ball MP, Church GM, Leonard DGB, Pereira S, McGuire AL, Caskey CT, Sanderson SC, Schadt EE, Nielsen DE, Crawford SD, Green RC; PeopleSeq Consortium. . Predispositional genome sequencing in healthy adults: design, participant characteristics, and early outcomes of the PeopleSeq Consortium. Genome Med, 2019. [PubMed] (Genome Med. 2019 Feb 27;11(1):10. doi: 10.1186/s13073-019-0619-9.) | Journal Article |
CF Carrier Testing: The Choice is Yours. Silver Spring: Macro International, 1994. (Educational Video) |
Video |
Mahowald, M.B. "Reproductive Genetics and Gender Justice." In: Women and Prenatal Testing: Facing the Challenges of Genetic Technology, eds. K. Rothenberg and E. Thompson. Columbus: Ohio State University Press, 1994. 304p. |
Book Chapter |
Mahowald, M.B., Ed. and author. "The Human Genome Project and Women." and "Gender Justice in Genetics." Women's Health Issues. July/August 1997; 7(4): 281p. [PubMed] |
Journal Article |
Mahowald, M.B. Women and Children in Health Care: An Unequal Majority. New York: Oxford University Press, 1993. |
Book |
Lester, L. et al. "The Human Genome Project and Women: Cystic Fibrosis, a Case Study." Journal of Women's Health, Decempber 1995; 4: 623-635. |
Journal Article |
Mahowald, M.B. et al. "The New Genetics and Women." The Milbank Quarterly. 1996; 74: 239-283. |
Journal Article |
Ravin, A.J., M.B. Mahowald and C.B. Stocking. "Genes or Gestation? Attitudes of Women and Men about Biologic Ties to Children." Journal of Women's Health. 1997; 6(6): 639-647. |
Journal Article |
Mahowald, M.B. "Toward Gender Justice in Genetics." Proceedings of the International Social Philosophy Conference. Helsinki, Finland: University of Helsinki, August 1993. |
Book Chapter |
Maley, J. A. & Ad hoc Committee on Ethical Codes and Principles NSGC. An Ethics Casebook for Genetic Counselors. 126 (Center of Biomedical Ethics and Division of Medical Genetics, University of Virginia, 1994). |
Book |
Heatherly, R., et al. (2016). "A multi-institution evaluation of clinical profile anonymization." J Am Med Inform Assoc 23(e1): e131-137. [PubMed] [Oxford Journals] |
Journal Article |
Heatherly, R., Denny, J. C., Haines, J. L., Roden, D. M. & Malin, B. A. Size matters: How population size influences genotype–phenotype association studies in anonymized data. J. Biomed. Inform. 52, 243–250 (2014). [PubMed] |
Journal Article |
Hazin, R. et al. Ethical, legal, and social implications of incorporating genomic information into electronic health records. Genet. Med. 15, 810–6 (2013). [PubMed] |
Journal Article |
Wan Z, Vorobeychik Y, Xia W, Clayton EW, Kantarcioglu M, Malin B. . Expanding Access to Large-Scale Genomic Data While Promoting Privacy: A Game Theoretic Approach.. Am J Hum Genet, 100 (2):316-322. 2017. [PubMed] | Journal Article |
Marchant, G. "Genomics and Toxic Substances: part II - Toxicogenetics." Environmental Law Reporter. 2003; 33: 10641-10667. |
Journal Article |
Sharp, R.R., Udell, M.A., Wilson, S.H. "Shaping Science Policy in the Age of Genomics." Nature Reviews Genetics. 2004; 5: 311-316. [PubMed] |
Journal Article |
Markel, H. Quarantine! East European Jewish Immigrants and the New York City Epidemics of 1892. Baltimore, Maryland: The Johns Hopkins University Press. 1997. 262p. |
Book |
Grodsky, J.A. "Genetics and Environmental Law: Redefining Public Health." California Law Review. 2005; 93: 171-270. |
Journal Article |
Marchant, G. "Genetic Data in Toxic Tort Litigation." Law and Policy. [Forthcoming 2006] |
Journal Article |
Silver, K. & Sharp, R. R. Ethical considerations in testing workers for the -Glu69 marker of genetic susceptibility to chronic beryllium disease. J. Occup. Environ. Med. 48, 434–43 (2006). [PubMed] |
Journal Article |
Marchant, G. E. & Lindor, R. A. Personalized medicine and genetic malpractice. Genet. Med. 15, 921–2 (2013). [PubMed Central] |
Journal Article |
Markel, H. "Knocking out the Cholera': Cholera, Class, and Quarantines in New York City, 1892." Bull Hist Med 1995; 69: 420-457. |
Journal Article |
Markel, H. "The Stigma of Disease: Implications of Genetic Screening." American Journal of Medicine. August 1992: 93; 209-15. [PubMed] |
Journal Article |
Marchant, G. "Genomics & Toxic Substances: Part II-Toxicogenetics." Envir. Law Rep. 2003; 33: 10641-10667. |
Journal Article |
Markel, H. "Di Goldine Medina (The Golden Land): Historical Perspectives of Eugenics and the East European (Ashkenzai) Jewish-American Community, 1880-1925." Health Matrix: Journal of Law-Medicine. Winter 1997; 7(1): 49-64. |
Journal Article |
Marshall P. Commentary: Politics, Culture and governance in the Development of Prior Informed Consent in Indigenous Communities, JP Rosenthal. Current Anthropology, 47(1): 134-135. 2006. [PubMed Central] |
Journal Article |
Marshall, P. A. et al. Voluntary participation and comprehension of informed consent in a genetic epidemiological study of breast cancer in Nigeria. BMC Med. Ethics 15, 38 (2014). [PMC] |
Journal Article |
Marshall P. Informed consent in international health research. Journal of Empirical Research on Human-Research Ethics, 1(1):25-42. 2006. |
Journal Article |
Marshall, P. A. (2008). ""Cultural competence" and informed consent in international health research." Camb Q Healthc Ethics 17(2): 206-215. [PubMed] [PubMed] |
Journal Article |
Marshall PA, Adebamowo CA, et al. Voluntary Participation and Informed Consent to International Genetic Research. American Journal of Public Health, 96(11): 1989-1995. 2006. [PubMed] |
Journal Article |
Rotimi, C, Marshall, P. Tailoring the process of informed consent in genetic and genomic research. Genome Medicine, 2(3):20. 2010 [PubMed] |
Journal Article |
Marshall, P. A. et al. Voluntary participation and comprehension of informed consent in a genetic epidemiological study of breast cancer in Nigeria. BMC Med. Ethics 15, 38 (2014). [PMC] |
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 |
Mester, J. L. et al. Communicating with Biobank Participants: Preferences for Receiving and Providing Updates to Researchers. Cancer Epidemiol. Biomarkers Prev. (2015). at [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 |
Goldenberg, A. J., Dodson, D. S., Davis, M. M. & Tarini, B. A. Parents’ interest in whole-genome sequencing of newborns. Genet. Med. 16, 78–84 (2014). [PubMed] |
Journal Article |
McGowan, M. L., et al. (2016). ""A rising tide lifts all boats": establishing a multidisciplinary genomic tumor board for breast cancer patients with advanced disease." BMC medical genomics 9(1): 71-71. [PubMed] [PubMed] |
Journal Article |
Stuttgen K, Dvoskin R, Bollinger J, McCague A, Shpritz B, Brandt J, Mathews D . Risk perception before and after presymptomatic genetic testing for Huntington's disease: Not always what one might expect. Mol Genet Genomic Med, 2018. [PubMed] (Mol Genet Genomic Med. 2018 Nov;6(6):1140-1147. doi: 10.1002/mgg3.494. Epub 2018 Nov 4.) | Journal Article |
J Genet Couns. 2018 Jul 2. doi: 10.1007/s10897-018-0274-0. |
Journal Article |
Robinson, J. O., Slashinski, M. J., Wang, T., Hilsenbeck, S. G. & McGuire, A. L. Participants’ recall and understanding of genomic research and large-scale data sharing. J. Empir. Res. Hum. Res. Ethics 8, 42–52 (2013). [PubMed] |
Journal Article |
Human Microbiome Project Consortium. Structure, function and diversity of the healthy human microbiome. Nature 486, 207–14 (2012). [PubMed Central] |
Journal Article |
Thorogood, A., Cook-Deegan, R., & Knoppers, B. M. (2017). Public variant databases: liability? Genet Med, 19(7), 838-841. doi:10.1038/gim.2016.189 [PubMed] |
Journal Article |
McGuire, A. L., Roberts, J., Aas, S., & Evans, B. J. (2019). Who Owns the Data in a Medical Information Commons? J Law Med Ethics, 47(1), 62-69. doi:10.1177/1073110519840485 [PubMed] |
Journal Article |
Villanueva AG, Cook-Deegan R, Koenig BA, Deverka PA, Versalovic E, McGuire AL, Majumder MA. . Characterizing the Biomedical Data-Sharing Landscape.. J Law Med Ethics, 47 (1):21-30. 2019. [Pubmed] | Journal Article |
Cline MS, Liao RG, Parsons MT, Paten B, Alquaddoomi F, Antoniou A, Baxter S, Brody L, Cook-Deegan R, Coffin A, Couch FJ, Craft B, Currie R, Dlott CC, Dolman L, den Dunnen JT, Dyke SOM, Domchek SM, Easton D, Fischmann Z, Foulkes WD, Garber J, Goldgar D, Goldman MJ, Goodhand P, Harrison S, Haussler D, Kato K, Knoppers B, Markello C, Nussbaum R, Offit K, Plon SE, Rashbass J, Rehm HL, Robson M, Rubinstein WS, Stoppa-Lyonnet D, Tavtigian S, Thorogood A, Zhang C, Zimmermann M; BRCA Challenge Authors, Burn J, Chanock S, Rätsch G, Spurdle AB . BRCA Challenge: BRCA Exchange as a global resource for variants in BRCA1 and BRCA2.. PLOS Genetics, 14 (12):0. 2018. [Pubmed] | Journal Article |
Maxson Jones K, Ankeny RA, Cook-Deegan R. . The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project.. J Hist Biol, 51 (4):693-805. 2018. [Pubmed] | Journal Article |
Guerrini CJ, Robinson JO, Petersen D, McGuire AL. . Should police have access to genetic genealogy databases? Capturing the Golden State Killer and other criminals using a controversial new forensic technique.. PLoS Biol, 16 (10):0. 2018. [Pubmed] | Journal Article |
Majumder MA. . United States: law and policy concerning transfer of genomic data to third countries.. Hum Genet, 137 (8):647-655. 2018. [Pubmed] | Journal Article |
Genealogy databases and the future of criminal investigation: The police can access your online family tree research—and use it to investigate your relatives. Natalie Ram, Christi J. Guerrini, Amy L. McGuire. Science. 2018 Jun 8; 360(6393): 1078–079. [Pubmed] |
Journal Article |
Evans BJ. . HIPAA's Individual Right of Access to Genomic Data: Reconciling Safety and Civil Rights.. Am J Hum Genet, 102 (1):5-10. 2018. [Pubmed] | Journal Article |
Deverka PA, Majumder MA, Villanueva AG, Anderson M, Bakker AC, Bardill J, Boerwinkle E, Bubela T, Evans BJ, Garrison NA, Gibbs RA, Gentleman R, Glazer D, Goldstein MM, Greely H, Harris C, Knoppers BM, Koenig BA, Kohane IS, La Rosa S, Mattison J, O'Donnell CJ, Rai AK, Rehm HL, Rodriguez LL, Shelton R, Simoncelli T, Terry SF, Watson MS, Wilbanks J, Cook-Deegan R, McGuire AL . Creating a data resource: what will it take to build a medical information commons?. Genome Med, 9 (1):0. 2017. [Pubmed] | Journal Article |
Majumder MA, Guerrini CJ, Bollinger JM, Cook-Deegan R, McGuire AL . Sharing data under the 21st Century Cures Act.. Genet Med, 19 (12):1289-1294. 2017. [Pubmed] | Journal Article |
Cook-Deegan R, Ankeny RA, Maxson Jones K. . Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance. Annu Rev Genomics Hum Genet, 18 (0):389-415. 2017. [Pubmed] | Journal Article |
Cook-Deegan R, McGuire AL. . Moving beyond Bermuda: sharing data to build a medical information commons.. Genome Res, 27 (6):897-901. 2017. [Pubmed] | Journal Article |
Thorogood A, Cook-Deegan R, Knoppers BM. . Public variant databases: liability?. Genet Med, 19 (7):838-841. 2016. [Pubmed] | Journal Article |
Majumder MA, Cook-Deegan R, McGuire AL. . Beyond Our Borders? Public Resistance to Global Genomic Data Sharing.. PLoS Biol, 0. 2016. [Pubmed] | Journal Article |
Mehlman, M.J. and K. Visocan. "Medicare and Medicaid: Are They Just Health Care Systems?" Houston Law Review: Winter 1992; 29(4): 835- |
Journal Article |
Botkin, J., R.T. Croyle., K.R. Smith et al. "A model protocol for evaluating the behavioral and psychosocial effects of BRCA1 testing." JNCI. 1996; 88: 872-882. [PubMed] |
Journal Article |
Mehlman, M.J. and J.R. Botkin. Access to the Genome: The Challenge to Equality. Washington, DC: Georgetown University Press. 1998. 152p. |
Book |
Mehlman, M., J. Botkin and A. Scarrow. "Coverage of genetic technology under national health reform." Am J Hum Genet. 1994; 55: 1054-1060. |
Journal Article |
Botkin, J., W. McMahon and L. Francis (eds). Genetics and Criminality: The Potential Misuse of Scientific Information in Court. The American Psychological Association Press, 1999. |
Book |
Maxwell J. Mehlman, “Genetic Enhancement in Sport: Just Another Form of Doping?”, Recent Patents on DNA & Gene Sequences (DIscontinued) (2012) 6: 240. https://doi.org/10.2174/187221512802717394 |
Journal Article |
Berg, J. W., Mehlman, M. J., Rubin, D. B., & Kodish, E. (2009). Making All the Children Above Average: Ethical and Regulatory Concerns for Pediatricians in Pediatric Enhancement Research. Clinical Pediatrics, 48(5), 472–480. https://doi.org/10.1177/0009922808330457 [SAGE Journals] |
Journal Article |
MEHLMAN, M., BERG, J., JUENGST, E., & KODISH, E. (2011). Ethical and Legal Issues in Enhancement Research on Human Subjects. Cambridge Quarterly of Healthcare Ethics, 20(1), 30-45. doi:10.1017/S0963180110000605 [Cambridge Quarterly Of Healthcare Ethics] |
Journal Article |
Mehlman, M. J. and S. Corley (2014). "A framework for Military Bioethics." 13(4): 331-349. [SSRN] [Taylor & Francis] |
Journal Article |
Mehlman MJ, Li TY . Ethical, legal, social, and policy issues in the use of genomic technology by the U.S. Military.. J Law Biosci, 1 (3):244-280. 2014. [Oxford Journals] | Journal Article |
Gregory, P. and F.S. Collins. "Assessment of High School Student Attitudes toward the Human Genome Project." American Journal of Human Genetics. 1992; 51(4):A140. |
Journal Article |
Merz J.F. "IRB review: necessary, nice, or needless?" Annals of Epidemiology. 1998; 8: 479-481. |
Journal Article |
Beskow L.M., Burke W., Merz J.F., et al. "Informed consent for population-based research involving genetics." J Am Med Assoc 286(18): 2315-2321 November 14, 2001 |
Journal Article |
Merz J.F, M.K, Cho, and P. Sankar. "Familial disclosure in defiance of nonconsent." American Journal of Human Genetics. 1998; 63: 898-899. |
Journal Article |
Merz J.F., D.G.B. Leonard, and E.R. Miller. "IRB review and consent in human tissue research." Science. 1999; 283: 1647-1648. |
Journal Article |
Merz J.F. 'The ethics of research on informed consent." Controlled Clinical Trials. 23(2): 172-177 April 2002 |
Journal Article |
Michie M, Allyse M. Gene modification therapies: views of parents of people with Down syndrome. Genet Med. 2018 Jun 21. doi: 10.1038/s41436-018-0077-6. [Epub ahead of print] PubMed PMID: 29930393. |
Journal Article |
Michie, Marsha; Allyse, Morgan; Mackison, Amanda; Stoll, Katie A . Conflicts of interest in genetic counseling: acknowledging and accepting.. Genet Med, 19 (8):864-866. 2017. [PubMed] | Journal Article |
Steinbach, R. J., et al. (2016). ""This lifetime commitment": Public conceptions of disability and noninvasive prenatal genetic screening." Am J Med Genet A 170a(2): 363-374. [PubMed] [Wiley Online Library] |
Journal Article |
Last updated: January 24, 2019