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.
Hoskins, K. F. et al. Assessment and counseling for women with a family history of breast cancer. A guide for clinicians. JAMA J. Am. Med. Assoc. 273, 577–85 (1995). [PubMed] |
Journal Article |
Emmons, K.M., K.J. Kalkbrenner, N. Klar et al. "Behavioral Risk Factors among Women Presenting for Genetic Testing." Cancer Epidemiology, Biomarkers & Prevention. January 2000; 9: 89-94. [PubMed] |
Journal Article |
Patenaude, A.F. "The genetic testing of children for cancer susceptibility: ethical, legal, and social issues." Behavioral Sciences and the Law. Fall 1996; 14(4): 393-410. [PubMed] |
Journal Article |
Schneider, K. A. et al. Accuracy of cancer family histories: comparison of two breast cancer syndromes. Genet. Test. 8, 222–8 (2004). [PubMed] |
Journal Article |
Patenaude A . Psychosocial Impact of Familial Cancers. In Malkin D Cancer: Inherited Tumors. New York, NY: Springer. 200. 1998. | Book Chapter |
Dorval, M., A.F. Patenaude, K.A. Schneider et al. "Anticipated Versus Actual Emotional Reactions to Disclosure of Results of Genetic Tests for Cancer Susceptibility: Findings From p53 and BRCA1 Testing Programs." Journal of Clinical Oncology. May 2000; 18(10): 2135-2142. [PubMed] |
Journal Article |
Bailey JA, Gu Z, Clark RA, Reinert K, Samonte RV, Schwartz S, Adams MD, Myers EW, Li PW, Eichler EE . Recent segmental duplications in the human genome. Science, 297 (5583):1003-7. 2002. [PubMed] | Journal Article |
Bailey, J. A., et al. (2003). "An Alu transposition model for the origin and expansion of human segmental duplications." Am J Hum Genet 73(4): 823-834. [PubMed] [PubMed] |
Journal Article |
Tuzun E, Bailey JA, Eichler EE . Recent segmental duplications in the working draft assembly of the brown Norway rat. Genome Res, 14 (4):493-506. 2004. [PubMed] | Journal Article |
Liu, G. et al. Analysis of primate genomic variation reveals a repeat-driven expansion of the human genome. Genome Res. 13, 358–68 (2003). [PubMed Central] |
Journal Article |
Keating, N. L., Stoeckert, K. A., Regan, M. M., DiGianni, L. & Garber, J. E. Physicians’ experiences with BRCA1/2 testing in community settings. J. Clin. Oncol. 26, 5789–96 (2008). [PubMed Central] |
Journal Article |
Eckstein L, Garrett JR, Berkman BE. A framework for analyzing the ethics of disclosing genetic research findings. J Law Med Ethics. 2014;42(2):190-207. [PMC] |
Journal Article |
Jeremy R. Garrett (2015) Collectivizing Rescue Obligations in Bioethics, The American Journal of Bioethics, 15:2, 3-11, DOI: 10.1080/15265161.2014.990163 [Taylor Francis Online] |
Journal Article |
Jeremy R. Garrett, The Poverty of Value Clarification: Using Ethical Theory to Critique and Transcend the “Givens” of Clinical Ethics Consultation, The American Journal of Bioethics, 16, 9, (48), (2016). |
Journal Article |
Jeremy R. Garrett (2013) Reframing the Ethical Debate Regarding Incidental Findings in Genetic Research, The American Journal of Bioethics, 13:2, 44-46, DOI: 10.1080/15265161.2013.757972 [Taylor Francis Online] |
Journal Article |
Tobin, S. L., Cho, M. K., Lee, S. S.-J., Magnus, D. C., Allyse, M., Ormond, K. E., & Garrison, N. A. (2012). Customers or research participants?: Guidance for research practices in commercialization of personal genomics. Genetics in Medicine. Retrieved from http://dx.doi.org/10.1038/gim.2012.64 [Nature] |
Journal Article |
Claw, K. G., et al. (2018). "A framework for enhancing ethical genomic research with Indigenous communities." Nat Commun 9(1): 2957. [PubMed] [Nature Article] |
Journal Article |
Deverka PA, Majumder MA, Villanueva AG et al. Creating a data resource: what will it take to build a medical information commons?. Genome Med, 9 (1):84. 2017. [PubMed] | Journal Article |
Bardill J, Garrison NA. . New Words and Old Stories: Indigenous Teachings in Health Care and Bioethics.. Am J Bioeth, 16 (5):50-2. 2016. [PubMed] | Journal Article |
Smith ME, Sanderson SC, Brothers KB et al. Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions. BMC Med Res Methodol, 16 (1):162. 2016. [PubMed] | Journal Article |
Katrina G. Claw, Matthew Z. Anderson, Rene L. Begay, Krystal S. Tsosie, Keolu Fox, Nanibaa’ A. Garrison |
Journal Article |
Taioli, E., Pedotti, P. & Garte, S. Importance of allele frequency estimates in epidemiological studies. Mutat. Res. 567, 63–70 (2004). [PubMed] |
Journal Article |
Garte S. "Locus-Specific Genetic Diversity Between Human Populations: An Analysis of the Literature." American Journal of Human Biology. 2003; 15: 1-10. [PubMed] |
Journal Article |
Garte, Seymour. "The Racial Genetics Paradox in Biomedical Research and Public Health." Public Health Reports. 2002; 117: 421-5. [PubMed] |
Journal Article |
Wu Z, Aporntewan C, Ballard DH, Lee JY, Lee JS, Zhao H . Two-stage joint selection method to identify candidate markers from genome-wide association studies. BMC Proc, 3 (Suppl 7):S29. 2009. [Full Text] | Journal Article |
Ballard, D. H., et al. (2009). "A pathway analysis applied to Genetic Analysis Workshop 16 genome-wide rheumatoid arthritis data." BMC proceedings 3 Suppl 7(Suppl 7): S91-S91. [PubMed] [PubMed Central] |
Journal Article |
Hirunsatit, R. et al. Twenty-one-base-pair insertion polymorphism creates an enhancer element and potentiates SLC6A1 GABA transporter promoter activity. Pharmacogenet. Genomics 19, 53–65 (2009). [PubMed Central] |
Journal Article |
Malison, R. T., Kranzler, H. R., Yang, B.-Z. & Gelernter, J. Human clock, PER1 and PER2 polymorphisms: lack of association with cocaine dependence susceptibility and cocaine-induced paranoia. Psychiatr. Genet. 16, 245–9 (2006). [PubMed] |
Journal Article |
Malison, R. T. et al. Inter-rater reliability and concurrent validity of DSM-IV opioid dependence in a Hmong isolate using the Thai version of the Semi-Structured Assessment for Drug Dependence and Alcoholism (SSADDA). Addict. Behav. 36, 156–60 (2011). [PubMed Central] |
Journal Article |
Krusong, K. et al. High levels of histidine decarboxylase in the striatum of mice and rats. Neurosci. Lett. 495, 110–4 (2011). [PubMed Central] |
Journal Article |
Listman, J. B. et al. Demographic changes and marker properties affect detection of human population differentiation. BMC Genet. 8, 21 (2007). [PubMed Central] |
Journal Article |
Listman, J. B. et al. Identification of population substructure among Jews using STR markers and dependence on reference populations included. BMC Genet. 11, 48 (2010). [PubMed Central] |
Journal Article |
Listman, J. B. et al. Southeast Asian origins of five Hill Tribe populations and correlation of genetic to linguistic relationships inferred with genome-wide SNP data. Am. J. Phys. Anthropol. 144, 300–8 (2011). [PubMed Central] |
Journal Article |
Kalayasiri, R., Mutirangura, A., Verachai, V., Gelernter, J. & Malison, R. T. Risk factors for methamphetamine-induced paranoia and latency of symptom onset in a Thai drug treatment cohort. Asian Biomed. 3, 635–643 (2009). [Asian Biomedicine] |
Journal Article |
Kalayasiri, R. et al. Adolescent cannabis use increases risk for cocaine-induced paranoia. Drug Alcohol Depend. 107, 196–201 (2010). [PubMed Central] |
Journal Article |
Ittiwut, R. et al. Association between polymorphisms in catechol-O-methyltransferase (COMT) and cocaine-induced paranoia in European-American and African-American populations. Am. J. Med. Genet. Part B Neuropsychiatr. Genet. 156B, 651–60 (2011). [PubMed] |
Journal Article |
Ittiwut, C. et al. GABRG1 and GABRA2 variation associated with alcohol dependence in African Americans. Alcohol. Clin. Exp. Res. 36, 588–93 (2012). [PubMed] |
Journal Article |
Ittiwut, C. et al. Interpopulation linkage disequilibrium patterns of GABRA2 and GABRG1 genes at the GABA cluster locus on human chromosome 4. Genomics 91, 61–9 (2008). [PubMed Central] |
Journal Article |
Broome M.E., Kodish R., Geller G., Siminoff L. "Children in research: New perspectives and practices for informed consent." IRB: Ethics & Human Research Supplement. 2003; 25: S20-S25. [PubMed] |
Journal Article |
Bernhardt B.A., Tambor E.S., Fraser G., Wissow L.S., Geller G. "Parents' and children's attitudes toward the enrollment of minors in genetic susceptibility research: Implications for informed consent." American Journal of Medical Genetics. 2003; 116A: 315-323. [PubMed] |
Journal Article |
Geller G, Tambor ES, Bernhardt BA, Wissow LS, Fraser G . Mothers and daughters from breast cancer families: a qualitative study of their perceptions of risks and benefits associated with minor's participation in genetic susceptibility research. J Am Med Womens Assoc, 55 (5):280-4, 293. 2000. [PubMed] | Journal Article |
Geller G . Commentary: weighing burdens and benefits rather than competence. BMJ, 318 (7190):1065-6. 1999. [PubMed] | Journal Article |
Geller G . The ethics of predictive genetic testing in prevention trials involving adolescents. In Kodish E Ethics and Research with Children: A Case-Based Approach. New York, NY: Oxford University Press. 194-222. 2005. | Book Chapter |
Geller G, Tambor ES, Bernhardt BA, Fraser G, Wissow LS . Informed consent for enrolling minors in genetic susceptibility research: a qualitative study of at-risk children's and parents' views about children's role in decision-making. Journal of Adolescent Health, 32 (4):260-71. 2003. [PubMed] | Journal Article |
Geller G., Bernhardt B.A., Holtzman, N.A. "The media and public reaction to genetic research." JAMA. 2002; 287: 773. [PubMed] |
Journal Article |
Tambor E.S., Bernhardt B.A., Rodgers J. et al. "Mapping the human genome: An assessment of media coverage and public reaction." Genetics in Medicine. 2002 4(1): 31-36. [PubMed] |
Journal Article |
Geller G., Tambor E.S., Bernhardt B.A., Rodgers J., Holtzman N.A. "Houseofficers' reactions to media coverage about the sequencing of the human genome." Soc Sci Med 2003; 56: 2211-2220. [Full Text] |
Journal Article |
Geller, G., Bernhardt, B.A., Rodgers, J.E., Holtzman, N.A. "Scientists' and science writers' experiences reporting genetic discoveries: Toward an ethic of trust in science journalism." Genetics in Medicine. 2005: 7(3); 198-205. [PubMed] |
Journal Article |
Mountcastle-Shah E., Tambor E., Bernhardt B.A., Geller G. et al. "Assessing mass media reporting of disease-related genetic discoveries: Development of an instrument and initial fundings." Science Communication. 2003; 24: 458-478. |
Journal Article |
Holtzman, N. A. et al. The quality of media reports on discoveries related to human genetic diseases. Community Genet. 8, 133–44 (2005). [PubMed] |
Journal Article |
Bernhardt BA, Rushton CH, Carrese J, Pyeritz RE, Kolodner K, Geller G . Distress and burnout among genetic service providers. Genet Med, 11 (7):527-35. 2009. [PubMed] | Journal Article |
Bernhardt BA, Silver R, Rushton CH, Micco E, Geller G . What keeps you up at night? Genetics professionals' distressing experiences in patient care. Genet Med, 12 (5):289-97. 2010. [PubMed] | Journal Article |
Geller G, Bernhardt BA, Carrese J, Rushton CH, Kolodner K . What do clinicians derive from partnering with their patients? A reliable and valid measure of "personal meaning in patient care". Patient Educ Couns, 72 (2):293-300. 2008. [PubMed] | Journal Article |
Geller G, Rushton CH, Francomano C, Kolodner K, Bernhardt BA . Genetics professionals' experiences with grief and loss: implications for support and training. Clin Genet, 77 (5):421-9. 2010. [PubMed] | Journal Article |
Geller G, Micco E, Silver RJ, Kolodner K, Bernhardt BA . The role and impact of personal faith and religion among genetic service providers. Am J Med Genet C Semin Med Genet, 151C (1):31-40. 2009. [PubMed] | Journal Article |
Bernhardt, B.A., Mastromariano-Haunstetter, C., Roter, D., Geller, G. "How do obstetric providers discuss referrals for prenatal genetic counseling?" J Genet Couns. 2004; 14(2):109-17. [PubMed] |
Journal Article |
Roter, D. L., Geller, G., Bernhardt, B. A., Larson, S. M. & Doksum, T. Effects of obstetrician gender on communication and patient satisfaction. Obstet. Gynecol. 93, 635–41 (1999). [PubMed] |
Journal Article |
Bernhardt, B.A., G. Geller, T. Doksum et al. "Prenatal Genetic Testing: Content of Discussions Between Obstetric Providers and Pregnant Women. Obstetrics and Gynecology. May 1998; 91(5 Part I): 648-655. [PubMed] |
Journal Article |
Geller, G., T. Doksum, B.A. Bernhardt and S.A. Metz. "Participation in Breast Cancer Susceptibility Testing Protocols: Influence of Recruitment Source, Altruism, and Family Involvement on Women's Decisions." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 377-383. [Pubmed] [Pubmed] |
Journal Article |
Geller, G., M. Strauss, B.A. Bernhardt, and N.A. Holtzman. "Decoding informed consent: Insights from women regarding genetic testing for breast cancer susceptibility." Hastings Center Report. 1997; 27(2): 28-33. |
Journal Article |
Geller G., J.R. Botkin, M.J. Green et al. "Genetic testing for susceptibility to adult-onset cancer: The process and content of informed consent." JAMA. 1997; 277: 1467-1474. (Joint CGSC publication) [PubMed] |
Journal Article |
Bernhardt B.A., G. Geller, T. Doksum, and S.A. Metz. "How effective are nurses and genetic counselors at conducting the informed consent process for breast cancer susceptibility testing?" Oncology Nursing Forum. January 2000; 27(1): 33-39. |
Journal Article |
Geller, G., B.A. Bernhardt, K.A. Helzlsouer et al. "Informed consent and BRCA1 testing." Nature Genetics. 1995; 11: 364. [PubMed] |
Journal Article |
Bernhardt, B.A., G. Geller, M. Strauss et al. "Towards a model informed consent process: A qualitative assessment of women's attitudes about genetic testing for breast cancer risk. Journal of Genetic Counseling. 1997; 6(2): 207-222. |
Journal Article |
Bernhardt BA, Geller G, Strauss M, Helzlsouer KJ, Stefanek M, Wilcox PM, Holtzman NA . Toward a model informed consent process for BRCA1 testing: a qualitative assessment of women's attitudes. J Genet Couns, 6 (2):207-22. 1997. [PubMed] | Journal Article |
Bernhardt BA, Geller G, Doksum T, Metz SA . Evaluation of nurses and genetic counselors as providers of education about breast cancer susceptibility testing. Oncol Nurs Forum, 27 (1):33-9. 2000. [PubMed] | Journal Article |
Eisinger F, Geller G, Burke W, Holtzman NA . Cultural basis for differences between US and French clinical recommendations for women at increased risk of breast and ovarian cancer. Lancet, 353 (9156):919-20. 1999. [PubMed] | Journal Article |
Geller G, Bernhardt BA, Doksum T, Helzlsouer KJ, Wilcox P, Holtzman NA . Decision-making about breast cancer susceptibility testing: how similar are the attitudes of physicians, nurse practitioners, and at-risk women?. J Clin Oncol, 16 (8):2868-76. 1998. [PubMed] | Journal Article |
Geller, G., et al. (1997). ""Decoding" informed consent. Insights from women regarding breast cancer susceptibility testing." Hastings Cent Rep 27(2): 28-33. [PubMed] [PubMed] |
Journal Article |
Tambor, E. S. et al. Should women at increased risk for breast and ovarian cancer be randomized to prophylactic surgery? An ethical and empirical assessment. J. Womens. Health Gend. Based. Med. 9, 223–33 (2000). [PubMed] |
Journal Article |
James, C., Geller, G., Bernhardt, B. A., Docksum, T. & Holtzman, N. A. Are practicing and future physicians prepared to obtain informed consent? The case of genetic testing for susceptibility to breast cancer. Community Genet. 1, 203–12 (1998). [PubMed] |
Journal Article |
Gert B. "Ethics and Research Subject Counseling," in Genes, Ethics, and Cancer In The Work Environment, Sheldon W. Samuels and Arthur C., Eds. Upton, OEM Press and Ramazzini Institute, 1998, pp. 25-31. |
Book Chapter |
Gert B. "Die Auswirkungen des genetischen Wissens ouf unsere Gesundheits- und Krankheitsknozeptionen," Zukunftsentwürfe: Ideen für eine Kultur der Veräbderung, edited by Jörn Rüsen, Hanna Leitgeb, and Norbert Jegelka, Campus Verlag, 1999, pp. 257- 269. |
Book Chapter |
Gert B. "Thinking about Huxley's Brave New World: Was it Wrong to Create a Genetic Hierarchical Society? Is it wrong to Prevent One?" in Etica Della Ricerca Biologica. edited by Cosimo Marco Mazzoni (Leo S. Olschki, 2000), pp. 125-133. |
Book Chapter |
Berger, E.M. and B. Gert. "Genetic Disorders and the Ethical Status of Germ-Line Gene Therapy." Journal of Medicine and Philosophy. December 16, 1991: 16(6); 667-683. (was reprinted in Medical Ethics, edited by Michael Boylan, 2000.) [PubMed] |
Journal Article |
Gert B. "Genetic Engineering: Is It Morally Acceptable?" USA Today, 127(2644), January 1999, pp. 28-30. |
Journal Article |
Gert B. "Morality and Human Genetic Engineering," Jahrbuch f¨r Recht und Ethik - Annual Review of Law and Ethics, Der analysierte Mensch - The Human Analyzed, edited by B. Sharon Byrd, Joachim Hruschka, Jan C, Joerden, Duncker & Humblot, 1999, pp. 41- 52. |
Journal Article |
Gert B. "Genetic Engineering," Encyclopedia of Ethics, 2001, Second Edition, Edited by Lawrence Becker and Charlotte Becker. Volume I, pp. 602-606. 2001. |
Book Chapter |
Gert, B., E.M. Berger, G.F. Cahill, Jr. et al. Morality and the New Genetics: A Guide for Students and Health Care Providers. Boston: Jones and Bartlett, 1996. 242p. |
Book |
Samuels S, Upton A Eds. Genes, Cancer and Ethics in the Workplace. Beverly Farms, MA: OEM Press 1998. | Book |
Gert B ed. Morality and Scientific Research. Research Triangle Park, NC: Sigma Xi 157-173. 1993. | Book |
Botkin JR . Ethical issues and practical problems in preimplantation genetic diagnosis. J Law Med Ethics, 26 (1):17-28. 1998. [PubMed] | Journal Article |
Stroup, A. M. & Smith, K. R. Familial effects of BRCA1 genetic mutation testing: changes in perceived family functioning. Cancer Epidemiol. Biomarkers Prev. 16, 135–41 (2007). [PubMed] |
Journal Article |
Smith, K. R., Ellington, L., Chan, A. Y., Croyle, R. T. & Botkin, J. R. Fertility Intentions Following Testing for a BRCA1 Gene Mutation. Cancer Epidemiol. Biomarkers Prev. 13, 733–740 (2004). [AACR Journals] |
Journal Article |
McKinnon, W. C. et al. Predisposition genetic testing for late-onset disorders in adults. A position paper of the National Society of Genetic Counselors. JAMA J. Am. Med. Assoc. 278, 1217–20 (1997). [PubMed] |
Journal Article |
Munger, KM, Gill, CJ, Ormond, KE, Kirschner, KL. The Next Exclusion Debate: Assessing Technology, Ethics, And Intellectual Disability after The Human Genome Project. Mental Retardation And Developmental Disabilities Research Reviews, 13(2): 121-128. 2007. [PubMed] |
Journal Article |
Alliey-Rodriguez N, Zhang D, Badner JA, Lahey BB, Zhang X, Dinwiddie S, Romanos B, Plenys N, Liu C, Gershon ES . Genome-wide association study of personality traits in bipolar patients.. Psychiatric Genetics, 21 (4):190-4. 2011. [PubMed] | Journal Article |
Di Tillio-Gonzalez D, Fischbach RL . Harmonizing regulations for biomedical research: a critical analysis of the US and Venezuelan systems. Dev World Bioeth, 8 (3):167-77. 2008. [PubMed] | Journal Article |
Glanz, K., J. Grove, C. Lerman et al. "Correlates of Intentions to Obtain Genetic Counseling and Colorectal Cancer Gene Testing Among At-Risk Relatives from Three Ethnic Groups." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 329-336. [Pubmed] [PubMed] |
Journal Article |
Glanz K, Steffen AD, Taglialatela1 LA. Effects of Colon Cancer Risk Counseling for First-Degree Relatives. Cancer Epidemiol Biomarkers Prev, 16(7):1485-1491. 2007. [PubMed] |
Journal Article |
Glanz K., Grove J., Le Marchand L., et al. "Underreporting of family history of colon cancer: Correlates and implications" Cancer Epidem Biomar. July 1999; 8(7): 635-639. [PubMed] |
Journal Article |
Gordon, E. J., et al. (2018). "African American Living Donors' Attitudes About APOL1 Genetic Testing: A Mixed Methods Study." Am J Kidney Dis 72(6): 819-833. [PubMed Access] |
Journal Article |
Calvo, C.M, Johnson, A., eds. "Genetics Policy Report: Employment Issues." National Conference of State Legislatures. 2001; 1-38. |
Journal Article |
Gostin, L.O., Hodge J.G. "Genetic privacy and the law: An end to genetics exceptionalism." ABA Jurimetrics. 1999; 40: 21-58. [PubMed] |
Journal Article |
Hodge, J.G., Harris, M.E. "International genetics research and issues of group privacy." Journal of Biolaw and Business. 2001; Special Supp.: 15-21. |
Journal Article |
Goston, L.O., Hodge, J.G., Calvo, C.M. "Genetics Policy and Law: A Report for Policymakers." National Conference of State Legislatures. 2001; 1-101. |
Journal Article |
Johnson, A., Calvo, C.M., eds. "Genetics Policy Report: Privacy." National Conference of State Legislatures. 2002; 1-46. |
Journal Article |
King, M. P. State roles in health: A snapshort for state legislatures. in Natl. Conf. State Legis. 1–24 (2002). |
Journal Article |
King MP . State roles in health: A snapshot for state legislatures. Denver, CO: National Conference of State Legislators 1-24. 2002. | Book |
Graber, G.; J. Collmann; and S. Dombrowski. "Human Gene Therapy: A Handbook for Community Discussion." Knoxville: University of Tennessee, 1993. (Accompanying video) |
Book |
Last updated: January 24, 2019