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.
Gordon, E., et al. (2011). ""It's Not Like Judgment Day": Public Understanding of and Reactions to Personalized Genomic Risk Information." J Genet Couns 21: 423-432. [ResearchGate] [PubMed] |
Journal Article |
Gollust SE, Gordon ES, Zayac C, Griffin G, Christman MF, Pyeritz RE, Wawak L, Bernhardt BA. . Motivations and perceptions of early adopters of personalized genomics: perspectives from research participants.. Public Health Genomics., 2012. [PubMed] (Public Health Genomics. 2012;15(1):22-30. doi: 10.1159/000327296. Epub 2011 Jun 3.) | Journal Article |
Bernhardt BA, Zayac C, Pyeritz RE. . Why is genetic screening for autosomal dominant disorders underused in families? The case of hereditary hemorrhagic telangiectasia.. Genet Med., 2011. [PubMed] (Genet Med. 2011 Sep;13(9):812-20. doi: 10.1097/GIM.0b013e31821d2e6d.) | Journal Article |
Bernhardt BA, Zayac C, Gordon ES, Wawak L, Pyeritz RE, Gollust SE. . Incorporating direct-to-consumer genomic information into patient care: attitudes and experiences of primary care physicians.. Per Med., 2012. [PubMed] (Per Med. 2012 Sep 1;9(7):683-692.) | 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 |
Michie, M., Cadigan, R. J., Henderson, G. & Beskow, L. M. Am I a control?: Genotype-driven research recruitment and self-understandings of study participants. Genet. Med. 14, 983–9 (2012). [PubMed Central] |
Journal Article |
Check, D. K., Wolf, L. E. & Dame, L. A. Certificates of confidentiality and informed consent: perspectives of IRB chairs and institutional legal counsel. IRB Ethics Hum. Res. 36, 1–8 (2014). [PubMed] |
Journal Article |
Beskow LM, Hammack CM, Brelsford KM. Thought leader perspectives on benefits and harms in precision medicine research. PLoS One. 2018;13(11):e0207842. Published 2018 Nov 26. doi:10.1371/journal.pone.0207842 [PLoS One] |
Journal Article |
Wolf LE, Beskow LM. New and Improved? 21st Century Cures Act Revisions to Certificates of Confidentiality. Am J Law Med. 2018;44(2-3):343-358. [PubMed Central] |
Journal Article |
Beskow LM. Lessons from HeLa Cells: The Ethics and Policy of Biospecimens. Annu Rev Genomics Hum Genet. 2016;17:395-417. [Annual Review of Genomics and Human Genetics] |
Journal Article |
Biesecker B.B., C.W. Vockley; and E. Conover. "Implications of Human Genome Research: Impact on Graduate Education in Genetic Counseling." Journal of Genetic Counseling. 1993; 2(3): 213-229. [PubMed] |
Journal Article |
Smith, S.C.; N.S. Warren; and L. Misra. "Minority Recruitment into the Genetic Counseling Profession." Journal of Genetic Counseling. 1993; 2(3): 171-181. |
Journal Article |
Weil, J. and Mittman, I. "A Teaching Framework for Cross-Cultural Genetic Counseling." Journal of Genetic Counseling. 1993; 2(3): 159-69. [Full Text] |
Journal Article |
Rapp, R. Amniocentesis in sociocultural perspective. J. Genet. Couns. 2, 183–96 (1993). [PubMed] |
Journal Article |
Smith, A. C. M. Update on master’s genetic counseling training programs: Survey of curriculum content and graduate analysis summary. J. Genet. Couns. 2, 197–211 (1993). [SpringerLink] |
Journal Article |
Punales-Morefon, D. and Rapp., R. "Ethnocultural Diversity and Genetic Counseling Training: The Challenge for a Twenty-first Century." Journal of Genetic Counseling. 1993; 2(3): 155-158. |
Journal Article |
Blacker, D. and Tanzi, R.E. . "Genetic Approaches to Risk Assessment: Implications for Early Diagnosis." In, L. Scinto and K. Daffner (ed). Early Diagnosis of Alzheimer's Disease. Totowa, New Jersey: Humana Press, 2000. |
Book Chapter |
Blacker D . New insights into genetic aspects of Alzheimer's disease. Does genetic information make a difference in clinical practice?. Postgrad Med, 108 (5):119-22, 125-6, 129. 2000. [PubMed] | Journal Article |
Finn CT, Wilcox MA, Korf BR, Blacker D, Racette SR, Sklar P, Smoller JW . Psychiatric genetics: a survey of psychiatrists' knowledge, opinions, and practice patterns. J Clin Psychiatry, 66 (7):821-30. 2005. [PubMed] | Journal Article |
Tanzi, R. E., & Blacker, D. (2001). Genetic Screening in Alzheimer’s Disease: Usefulness, limits, and future prospects. Generations, 24(1), 58. [ELSI Publications] |
Journal Article |
Moscarillo, T. J. et al. Knowledge of and attitudes about Alzheimer disease genetics: report of a pilot survey and two focus groups. Community Genet. 10, 97–102 (2007). [PubMed] |
Journal Article |
Bloss CS, Madlensky L, Schork NJ, Topol EJ . Genomic information as a behavioral health intervention: can it work?. Per Med, 8 (6):659-57. 2011. [PubMed] | Journal Article |
Bloss CS, Schork NJ, Topol EJ . Effect of direct-to-consumer genomewide profiling to assess disease risk. N Engl J Med, 364 (6):524-34. 2011. [PubMed] | Journal Article |
Darst, B. F., Madlensky, L., Schork, N. J., Topol, E. J. & Bloss, C. S. Characteristics of Genomic Test Consumers Who Spontaneously Share Results With Their Health Care Provider. Health Commun. 29, 105–108 (2013). [PubMed] |
Journal Article |
Bloss CS, Darst BF, Topol EJ, Schork NJ . Direct-to-consumer personalized genomic testing. Hum Mol Genet, 20 (R2):R132-41. 2011. [PubMed] | Journal Article |
Bloss C, Nebeker C, Bietz M, Bae D, Bigby B, Devereaux M, Fowler J, Waldo A, Weibel N, Patrick K, Klemmer S, Melichar L. . Reimagining Human Research Protections for 21st Century Science.. J Med Internet Res, 18 (12):e329. 2016. [PubMed] | Journal Article |
Blumenthal, D., Campbell, E.G., Anderson, M.S. et al. "Data Withholding in Academic Genetics: Evidence from a National Survey." JAMA. 2002; 287(4): 473-480. [PubMed] |
Journal Article |
Blumenthal, D. "Growing Pains for New Academic/Industry Relationships." Health Affairs. 1994; 13(3): 176-193. [PubMed] |
Journal Article |
Blumenthal D, Campbell EG, Causino N, Louis KS . Participation of life-science faculty in research relationships with industry. N Engl J Med, 335 (23):1734-9. 1996. [PubMed] | Journal Article |
Campbell EG, Louis KS, Blumenthal D . Looking a gift horse in the mouth: corporate gifts supporting life sciences research. JAMA, 279 (13):995-9. 1998. [PubMed] | Journal Article |
Campbell EG, Weissman JS, Blumenthal D . Relationship between market competition and the activities and attitudes of medical school. JAMA, 278 (3):222-6. 1997. [PubMed] | Journal Article |
Blumenthal, D. (1992). "Academic-Industry Relationships in the Life Sciences: Extent, Consequences, and Management." JAMA 268(23): 3344-3349. [JAMA] [PubMed] |
Journal Article |
Blumenthal D, Campbell EG, Anderson MS, Causino N, Louis KS . Withholding research results in academic life science. Evidence from a national survey of faculty. JAMA, 277 (15):1224-8. 1997. [PubMed] | Journal Article |
Blumenthal, D., et al. (1997). "Academic-industry research relationships in genetics: A field apart." Nature Genetics 16(1): 104-108. [Nature] [PubMed] |
Journal Article |
Blumenthal D, Causino N, Campbell E, Louis KS . Relationships between academic institutions and industry in the life sciences--an industry survey. N Engl J Med, 334 (6):368-73. 1996. [PubMed] | Journal Article |
Botkin J.R. "Wrongful life and wrongful birth: ethical and legal issues in prenatal diagnosis." Florida State University Law Review. 2003 |
Journal Article |
Botkin J.R. "Ethical issues and practical problems in preimplantation genetic diagnosis." Am J Law, Med and Ethics. 1998; 26: 17-28. (Reprinted in Ethical Issues in Contemporary Medicine. B. Steinbock and J. Arras, eds.) [PubMed] |
Journal Article |
Borkin J Murray T, Mehlman M. Encyclopedia of Ethics, Legal, and Policy Issues in Biotechnology. Hoboken, NJ: John Wiley and Sons 2000. | Book |
Botkin JR . Prenatal diagnosis and the selection of children. Fla State Univ Law Rev, 30 (2):265-93. 2003. [PubMed] | Journal Article |
Botkin J.R. "Preimplantation genetic diagnosis and the biologic selection of children." Kaiser Permanente Newsletter, January 2002. [Full Text] |
Journal Article |
Botkin J.R. "Line erasing: developing professional standards for prenatal diagnosis." In Prenatal Testing and Disability Rights. E. Parens and A. Asch, eds. Washington, DC: Georgetown University Press, 2000: 288-307. |
Book Chapter |
Botkin J.R. Review of "Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children 19s Futures" by Dena Davis, Cambridge Healthcare Quarterly. 2002; 11(1): 102-105. |
Journal Article |
Rothwell, E. et al. Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study. Soc. Sci. Med. 74, 1305–9 (2012). [PubMed] |
Journal Article |
Rothwell, E. W. et al. Concerns of newborn blood screening advisory committee members regarding storage and use of residual newborn screening blood spots. Am. J. Public Health 101, 2111–6 (2011). [PubMed] |
Journal Article |
Lewis, M. H., Goldenberg, A., Anderson, R., Rothwell, E. & Botkin, J. State laws regarding the retention and use of residual newborn screening blood samples. Pediatrics 127, 703–12 (2011). [PubMed Central] |
Journal Article |
Botkin JR, Rothwell E, Anderson R, Stark L, Goldenberg A, Lewis M, Burbank M, Wong B . Public attitudes regarding the use of residual newborn screening specimens for research. Pediatrics, 129 (2):231-8. 2012. [PubMed] | Journal Article |
Botkin, J. R. (2016). Ethical issues in pediatric genetic testing and screening. Curr Opin Pediatr, 28(6), 700-704. doi:10.1097/mop.0000000000000418 [PubMed] |
Journal Article |
Baty, J.B., V.L. Venne, J. McDonald, R.T. Croyle, K. Smith, J.R. Botkin. "Genetic Counseling Protocols for BRCA1 testing." J Genetic Counseling. June 1997; 6(2): 223-244. |
Journal Article |
Mayer, R.N., K.R. Smith, C.D. Zick, J.R. Botkin. "Coercion, control and consequences in genetic testing: views on insurance among tested individuals and the general public." In Genetic Information: Acquisition, Access and Control. Thompson and Chadwick (Eds). New York, NY: Kluwer Academic/ Plenum Publishers, 1999. p.41-56. |
Book Chapter |
Croyle, R.T., Smith, K.R., Botkin, J.R. B. Baty, B., Nash, J. "Psychological Responses to BRCA1 Mutation Testing: Preliminary Findings." Health Psychology, 16(1):63-72. [PubMed] |
Journal Article |
Botkin, J.R. "Ethical Issues and practical problems in preimplantation genetic diagnosis." American Journal of Law, Medicine and Ethics. 1998; 26: 17-28. [PubMed] |
Journal Article |
Botkin JR, Smith KR, Croyle RT, Baty BJ, Wylie JE, Dutson D, Chan A, Hamann HA, Lerman C, McDonald J, Venne V, Ward JH, Lyon E . Genetic testing for a BRCA1 mutation: prophylactic surgery and screening behavior in women 2 years post testing. Am J Med Genet A, 118A (3):201-9. 2003. [PubMed] | Journal Article |
Wylie JE, Smith KR, Botkin JR . Effects of spouses on distress experienced by BRCA1 mutation carriers over time. Am J Med Genet C Semin Med Genet, 119C (1):35-44. 2003. [PubMed] | Journal Article |
Zick CD, Smith KR, Mayer RN, Botkin JR . Genetic testing, adverse selection, and the demand for life insurance. In Shaw G Cancer Genetics for the Clinician. New York, NY: Plenium Press. 2000. | Book Chapter |
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., West, J. A., Croyle, R. T. & Botkin, J. R. Familial context of genetic testing for cancer susceptibility: moderating effect of siblings’ test results on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiol. Biomarkers Prev. 8, 385–92 (1999). [PubMed] |
Journal Article |
Botkin J. "Ethical and Legal Issues in Genetic Testing for Cancer Susceptibility." in Shaw G. (ed) Cancer Genetics for the Clinician. Plenum Press. August 1999. |
Book Chapter |
Smith, K.R., C.D. Zick, R.N. Mayer, J.R. Botkin. "Genetic testing and adverse selection in the market for life insurance: preliminary findings for the BRCA1 gene mutation." In Genetic Information: Acquisition, Access and Control. A.K. Thompson and R.F. Chadwick (Eds). New York, NY: Kluwer Academic/ Plenum Publishers, 1999. p.57-70. |
Book Chapter |
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 |
Hamann, H. A. et al. Attitudes toward the genetic testing of children among adults in a Utah-based kindred tested for a BRCA1 mutation. Am. J. Med. Genet. Part A 92, 25–32 (2000). [PubMed] |
Journal Article |
Botkin J, McMahon W, Francis L (eds). Genetics and Criminality: The Potential Misuse of Scientific Information in Court Washington, DC: The American Psychological Association Press, 1999. 277p. |
Book |
Botkin J. "Fetal privacy and confidentiality." Hastings Center Report. 1995; 25(5): 32-40. [PubMed] |
Journal Article |
Byers PH, Ashkenas J . Pedigrees-publish? or perish the thought?. Am J Hum Genet, 63 (3):678-81. 1998. [PubMed] | Journal Article |
Botkin, J.R., W.M. McMahon, K.R. Smith and J.E. Nash. "Privacy and Confidentiality in the Publication of Pedigrees: A Survey of Investigators and Biomedical Journals." JAMA. June 10, 1998; 279(22): 1808-1812. [Note editorials devoted to this article: "Privacy matters". Nature Genetics 1998; [PubMed] |
Journal Article |
Bowen, D.J., A. Farkas and S.W. Vernon. "Psychosocial Issues in Cancer Genetics: From the Laboratory to the Public." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 326-328. [Pubmed] [Pubmed] |
Journal Article |
Bowen D.J., Burke W., Yasui Y., et al. "Effects of risk counseling on interest in breast cancer genetic testing for lower risk women." Genet Med. 4(5): 359-365 September-October 2002. [PubMed] |
Journal Article |
Bowen D.J., Helmes A., Powers D., et al. "Predicting breast cancer screening intentions and behavior with emotion and cognition." J Soc Clin Psychol. 22(2): 213-232 April 2003. |
Journal Article |
Bowen DJ, Bourcier E, Press N, Lerwin FM, Burke W. "Effects of Individual and Family Functioning on Interest in Genetic Testing." Community Genetics 2004;7:25-32. [PubMed] |
Journal Article |
Durfy, S.J, D.J. Bowen, A. McTiernan et al. "Attitudes and Interest in Genetic Testing for Breast and Ovarian Cancer Susceptibility in Diverse Groups of Women in Western Washington." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 369-375. [PubMed] |
Journal Article |
Bowen DJ, Bradford J, Powers D . Comparing sexual minority status across sampling methods and populations. Women Health, 44 (2):121-34. 2006. [PubMed] | Journal Article |
Bowen DJ, Burke W, Culver JO, Press N, Crystal S . Effects of counseling Ashkenazi Jewish women about breast cancer risk. Cultur Divers Ethnic Minor Psychol, 12 (1):45-56. 2006. [PubMed] | Journal Article |
Bowen DJ, Singal R, Eng E, Crystal S, Burke W . Jewish identity and intentions to obtain breast cancer screening. Cultur Divers Ethnic Minor Psychol, 9 (1):79-87. 2003. [PubMed] | Journal Article |
Bowen, D. J., et al. (2003). "Achieving utility with family history: colorectal cancer risk." Am J Prev Med 24(2): 177-182. [PubMed] [PubMed] |
Journal Article |
Bowen DJ, Morasca AA, Meischke H . Measures and correlates of resilience. Women Health, 38 (2):65-76. 2003. [PubMed] | Journal Article |
Helmes, A. W., Culver, J. O. & Bowen, D. J. Results of a randomized study of telephone versus in-person breast cancer risk counseling. Patient Educ. Couns. 64, 96–103 (2006). [PubMed] |
Journal Article |
Hart, S. L. & Bowen, D. J. Sexual orientation and intentions to obtain breast cancer screening. J. Women’s Heal. 18, 177–85 (2009). [PubMed Central] |
Journal Article |
McTiernan, A. et al. Comparisons of two breast cancer risk estimates in women with a family history of breast cancer. Cancer Epidemiol. Biomarkers Prev. 10, 333–8 (2001). [PubMed] |
Journal Article |
Trinidad SB, Ludman EJ, Hopkins S, et al. Community dissemination and genetic research: moving beyond results reporting. Am J Med Genet A. 2015;167(7):1542-50. [PubMed Central] |
Journal Article |
Hoeft TJ, Burke W, Hopkins SE, et al. Building partnerships in community-based participatory research: budgetary and other cost considerations. Health Promot Pract. 2013;15(2):263-70. |
Journal Article |
Brandt-Rauf SI, Brandt-Rauf E, Gershon R, Brandt-Rauf PW . The differing perspectives of workers and occupational medicine physicians on the ethical, legal and social issues of genetic testing in the workplace. New Solut, 21 (1):89-102. 2011. [PubMed] | Journal Article |
Brown R.S. and K. Marshall, eds. Advances in Genetic Information: A Guide for State Policy Makers. Lexington, KY: The Council of State Governments; 1992. 123p. |
Book |
Brown, R.S. "The State Response to Genetic Research." Journal of State Government. Jul-Sep 1991; 64(3): 98-99. |
Journal Article |
Brown, R.S. "State Governments and the Human Genome Project." Genetic Resource. 1992; 6(2): 19-21. |
Journal Article |
Browner, C.H. and Preloran, H.M. "Latinas, Amniocentesis and the Discourse of Choice." Culture, Medicine, and Psychiatry. 2000; 24(3): 353-75. [PubMed] |
Journal Article |
Browner, C.H. and Preloran, H.M. "Interpreting Low-Income Latinas' Amniocentesis Refusals." Hispanic Journal of Behavioral Sciences 2000; 22(3): 346-68. |
Journal Article |
Markens S, Browner CH, Preloran HM. "Im Not the One Theyre Sticking the Needle Into: Latino Couples, Fetal Diagnosis, and the Discourse of Reproductive Rights." Gender & Society. 2003; 17(3):462-81. [Full Text] |
Journal Article |
Browner CH and Preloran HM. "Expectations, Emotions, and Medical Decision Making: A Case Study on the Use of Amniocentesis." Transcultural Psychiatry. 2004; 41(4): 427-444. [PubMed] |
Journal Article |
Browner CH, Preloran HM, and Balzano S. (Accepted for publication.) "Identity Management in an At-Risk Medical Situation." In, Mary Lawler and Cheryl Mattingly, eds. The Engaged Self. |
Book Chapter |
Root R and Browner CH. "Practices of the Pregnant Self: Compliance with and Resistance to Biomedical Prenatal Norms." Culture, Medicine, and Psychiatry. 2001; 25(2):195-223. |
Journal Article |
Preloran, H.M., Browner, C.H. and Lieber, E. "Strategies for Motivating Latino Couples' Participation in Qualitative Health Research." American Journal of Public Health. 2001; 91(11): 1832-1841. |
Journal Article |
Browner, C.H. and Preloran, H.M. "Para sacarse la espina (To Get Rid of the Doubt): Mexican Immigrant Women's Amniocentesis Decisions." In, Ann R. S 18tnan, Nelly Oudshoorn, and Marta Kirejczyk, eds. Bodies of Technology: Women's Involvement with Reproductive Medicine, pp. 368-383. Columbus: Ohio State University Press. 2000. |
Book Chapter |
Preloran, H. M. & Browner, C. H. Paternidad Prenatal: parejas de origen mexicano decidiendo sobre el uso del diagnostico fetal. Rev. Anu. Investig. Folk. 12, (1997). [ELSI Publications] |
Journal Article |
Browner CH, Preloran HM, Casado MC, Bass H, Walker A. "Genetic Counseling Gone Awry: Some Consequences of Miscommunication between Prenatal Genetic Service Providers and Latina Clients." Social Science and Medicine. 2003; 56(9): 1933-46. [PubMed] |
Journal Article |
Preloran, H. M., et al. (2005). "Impact of interpreters' approach on Latinas' use of amniocentesis." Health Educ Behav 32(5): 599-612. [PubMed] [PubMed] |
Journal Article |
Balzano S, Preloran HM, Browner CH. "El protocolo medico como una forma de performance cultural: La neutralidad profesional y su efecto en la vida de los Pacientes y sus Familias" (The consequences of competing client and clinician agendas in prenatal care) Revista de Investigaciones Folclóricas. 2002; 17:145-155. |
Journal Article |
BROWNER, C. & PRELORAN, H. (2006). Entering the field: recruiting latinos for ethnographic research. In Hobbs, D., & Wright, R. The SAGE handbook of fieldwork (pp. 93-106). : SAGE Publications Ltd doi: 10.4135/9781848608085 [Sage] |
Book Chapter |
Browner CH, Preloran HM. "Culture and Communication in the Realm of Fetal Diagnosis. Unique Considerations for Latino Patients." In, Neil F. Sharpe and Ronald F. Carter, eds. Genetic Testing: Current Practices, Ethical Concerns, Legal Considerations. NY: John Wiley & Sons. 2006. |
Book Chapter |
Preloran, H. M., Browner, C. H. & Balzano, S. Globalizacion y salud: El impacto de un protocolo medico sin fronteras." (Globalization and Health: The Impact of a Medical Protocol Without Borders). Rev. Anu. Real. del Cono Sur (2005). [ELSI Publications] |
Journal Article |
Preloran, H. M., Balzano, S. & Browner, C. H. The Roles of Trust and Cross-Cultural Miscommunication in Clinical Decision-Making . Californian J. Heal. Promot. 1, 198–207 (2003). |
Journal Article |
Last updated: January 24, 2019