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.
Preloran, H. M., Browner, C. H. & Balzano, S. Texto y contexto en el analisis de la narrativa: Renegociación de roles en situaciones médicas con peligro de vida. Scr. Ethnol. 20, 23–36 (1999). [ELSI Publications] |
Journal Article |
Preloran, H. M., Browner, C. H. & Lieber, E. Strategies for motivating Latino couples’ participation in qualitative health research and their effects on sample construction. Am. J. Public Health 91, 1832–41 (2001). [PubMed Central] |
Journal Article |
Hunt, L. M., Castañeda, H. & DE Voogd, K. B. Do notions of risk inform patient choice? Lessons from a study of prenatal genetic counseling. Med. Anthropol. 25, 193–219 (2006). [PubMed] |
Journal Article |
Browner, C.H. and Preloran, H.M. "Male Partners' Role in Latinas' Amniocentesis Decisions." Journal of Genetic Counseling. 1999; 8(2): 85-108. [PubMed] |
Journal Article |
Browner, C.H., Preloran, H.M., and Cox, S.J. "Ethnicity, Bioethics, and Prenatal Diagnosis: the Amniocentesis Decisions of Mexican-origin Women and their Partners." American Journal of Public Health. 1999; 89(11): 1658-66. [PubMed Central] |
Journal Article |
Preloran, H.M. and Browner, C.H. "Rol de la tradición en la prácticas del embarazo: efectos de la información genética entre Mexicanas residentes en Estados Unidos." Revista de Investigaciones Folkloricas. 1997; 12: 67-75. |
Journal Article |
Browner CH. "Situating Women's Reproductive Activities." American Anthropologist. 2000; 102(4):773-88. |
Journal Article |
Buchanan, A.E., D.W. Brock, N. Daniels, and D. Wickler. From Chance to Choice: Genetics & Justice. Cambridge, UK: Cambridge University Press, 2000. 398p. |
Book |
Fletcher, J. C. (1995). "Assessing genetic risks. Implications for health and social policy, Lori B. Andrews, Jane E. Fullarton, Neil A. Holtzman, and Arno G. Motulsky, eds., Washington, DC: National Academy Press, 1994, 307 pages, $44.95." 12(4): 433-438. [Cambridge] |
Book |
Dignan M.B., Burhansstipanov L., Bemis L. "Genetic Education for Native Americans - Evaluation Methodology and Results." Genetics. February 2005: 169: 317-321. |
Journal Article |
Dignan M.B., Burhansstipanov L., Bemis L. "Successful Implementation of Genetic Education for Native Americans Workshops at National Conferences." Genetics. February 2005; 169: 516-521. [PubMed] |
Journal Article |
Burhansstipanov L., Bemis L., Dignan M. "Native American Cancer Education: Genetic and Cultural Issues." J Cancer Education. 2001a: 16(3); 142-145. [PubMed] |
Journal Article |
Burhansstipanov L., Bemis L., Dignan M., Dukepoo F. "Genetics Education: Development of Genetic Education Curriculum for Native American College and University Students." Genetics. 2001; 158:941-948. [PubMed] |
Journal Article |
Burhansstipanov L., Bemis L., Kaur J.S., Bemis G. "Sample genetic policy language for research conducted with Native Communities." J Cancer Education. 2005: 20(suppl.): 52-57. [PubMed] |
Journal Article |
Burhansstipanov L, Christopher S, Schumacher SA . Lessons learned from community-based participatory research in Indian country. Cancer Control, 12 (Suppl 2):70-6. 2005. [PubMed] | Journal Article |
Gamito EJ, Burhansstipanov L, Krebs LU, Bemis L, Bradley A . The use of an electronic audience response system for data collection. J Cancer Educ, 20 (1 Suppl):80-6. 2005. [PubMed] | Journal Article |
Gamito E., Burhansstipanov L., Krebs L.U., Bemis L., Bradley A. "Data Collection Using An Audience Response System." J Cancer Education. 2005; 20(Suppl.): 80-86. [PubMed] |
Journal Article |
Burhansstipanov L., Bemis L., Dignan M. "e;Native American Recommendations for Genetic Research to Be Culturally Respectful." Jurimetrics. 2002: 42(2);149-157. [PubMed] |
Journal Article |
Romero F., Bemis L., Burhansstipanov L., Dignan M. "Genetic Research and Native American Cultural Issues." J of Women and Minorities in Science and Engineering. 2001; 7: 97-106. |
Journal Article |
Culver JO, Bowen DJ, Reynolds SE, Pinsky LE, Press N, Burke W . Breast cancer risk communication: assessment of primary care physicians by standardized patients. Genet Med, 11 (10):735-41. 2009. [PubMed] | Journal Article |
Burke W, Laya MB . Genetic risk and breast cancer survival: another link in the chain of evidence. J Natl Cancer Inst, 91 (3):201-3. 1999. [PubMed] | Journal Article |
Warkentin TE, Bernstein RA . Correspondence: Genetic Testing. New Engl J Med, 348 (11):1067-9. 2003. [PubMed] | Journal Article |
Burke W, Press N, Pinsky L . Breast carcinoma genetics from a primary care perspective. Cancer, 80 (S3):621-26. 1997. | Journal Article |
Pinsky, LE . How to Interpret Sensitivity and Specificity. In Paauw DS, Burkholder LR, Migeon MB Guide to Internal Medicine. St. Louis, MO: Mosby Yearbook. 302. 1999. | Book Chapter |
Ramsey, S. D., Burke, W. & Clarke, L. An economic viewpoint on alternative strategies for identifying persons with hereditary nonpolyposis colorectal cancer. Genet. Med. 5, 353–63 (2003). [PubMed Central] |
Journal Article |
Shields, AE, Fullerton, SM, & Olden, K. Genes, environment, and cancer disparities. In Dimensions of Cancer Disparities, ed. H.. Koh, Springer: New York, NY. [Springer Link] |
Book Chapter |
Goering S, Holland S, Fryer-Edwards K. Transforming genetic research practices with marginalized communities: a case for responsive justice. Hast Center Report, 38(2):43-53. 2008. [PubMed] |
Journal Article |
Beitelshees, A. L., & Veenstra, D. L. (2011). Evolving research and stakeholder perspectives on pharmacogenomics. JAMA, 306(11), 1252–1253. [PubMed] |
Journal Article |
Caulfield, T., et al. (2009). "Race and ancestry in biomedical research: exploring the challenges." Genome Medicine 1(1): 8. [BioMedCentral] [PubMed] |
Journal Article |
Henrikson, N. B., Burke, W. & Veenstra, D. L. Ancillary risk information and pharmacogenetic tests: social and policy implications. Pharmacogenomics J. 8, 85–9 (2008). [PubMed] |
Journal Article |
McGuire, A. L. & Burke, W. An unwelcome side effect of direct-to-consumer personal genome testing: raiding the medical commons. JAMA J. Am. Med. Assoc. 300, 2669–71 (2008). [PubMed Central] |
Journal Article |
Burke W, Psaty BM. Personalized medicine in the era of genomics. JAMA, 298(14):1682-4. 2007. [PubMed] |
Journal Article |
Haga, S. B. & Burke, W. Pharmacogenetic testing: not as simple as it seems. Genet. Med. 10, 391–5 (2008). [PubMed] |
Journal Article |
Veenstra DL, Harris J, Gibson RL, Rosenfeld M, Burke W, Watts C. Pharmacogenomic testing to prevent aminoglycoside-induced hearing loss in cystic fibrosis patients: Potential impact on clinical, patient, and economic outcomes. Genet Med, 9(10):695-704. 2007. [PubMed] |
Journal Article |
Haga, S. B., Thummel, K. E. & Burke, W. Adding pharmacogenetics information to drug labels: lessons learned. Pharmacogenet. Genomics 16, 847–54 (2006). [PubMed] |
Journal Article |
Fullerton SM, Anderson G et al. Meeting the governance challenges of next-generation biorepository research. Sci Transl Med, 2 (15):15cm3. 2010. [PubMed Central] | Journal Article |
James, R. D., Yu, J.-H., Henrikson, N. B., Bowen, D. J. & Fullerton, S. M. Strategies and stakeholders: minority recruitment in cancer genetics research. Community Genet. 11, 241–9 (2008). [PubMed] |
Journal Article |
Fullerton S, Lee S . Secondary uses and the governance of de-identified data: Lessons from the human genome diversity panel. BMC Med Ethics, 12 16. 2011. [PubMed Central] | Journal Article |
Jaja, C., Burke, W., Thummel, K., Edwards, K. & Veenstra, D. L. Cytochrome p450 enzyme polymorphism frequency in indigenous and native american populations: a systematic review. Community Genet. 11, 141–9 (2008). [PubMed] |
Journal Article |
Fullerton S, Yu J et al. Population description and its role in the interpretation of genetic association. Hum Genet, 127 (5):563-72. 2010. [PubMed Central] | Journal Article |
Walker L, Starks H, West KM, Fullerton SM . dbGaP data access requests: a call for greater transparency. Sci Transl Med, 3 (113):113cm34. 2011. [PubMed] | Journal Article |
Wilfond BS, Diekema DS . Engaging children in genomics research: decoding the meaning of assent in research. Genet Med, 14 (4):437-43. 2012. [PubMed] | Journal Article |
Veenstra, D. L., et al. (2010). "A formal risk-benefit framework for genomic tests: facilitating the appropriate translation of genomics into clinical practice." Genet Med 12(11): 686-693. [PubMed] [PubMed] |
Journal Article |
Beskow LM, Burke W . Offering individual genetic research results: context matters. Sci Transl Med, 2 (38):38cm20. 2010. [PubMed Central] | Journal Article |
Burke W . Clinical validity and clinical utility of genetic tests. Curr Protoc Hum Genet, Chapter 9 (Unit 9):9.15.1-3. 2009. [PubMed] | Journal Article |
Burke W, Diekema DS . Ethical issues arising from the participation of children in genetic research. J Pediatr, 149 (1 Suppl):S34-8. 2006. [PubMed] | Journal Article |
Burke W, Laberge AM, Press N . Debating clinical utility. Public Health Genomics, 13 (4):215-23. 2010. [PubMed] | Journal Article |
Burke W, Press N . Ethical obligations and counseling challenges in cancer genetics. J Natl Compr Canc Netw, 4 (2):185-91. 2006. [PubMed] | Journal Article |
Burke W, Tarini B, Press NA, Evans JP . Genetic screening. Epidemiol Rev, 33 (1):148-64. 2011. [PubMed Central] | Journal Article |
Carlsten C, Burke W . Potential for genetics to promote public health: genetics research on smoking suggests caution about expectations. JAMA, 28 (20):2480-2. 2006. [PubMed] | Journal Article |
Carlson RJ . Preemptive public policy for genomics. J Health Polit Policy Law, 33 (1):39-51. 2008. [PubMed] | Journal Article |
Carlsten C, Halperin A, Crouch J, Burke W . Personalized medicine and tobacco-related health disparities: is there a role for genetics?. Ann Fam Med, 9 (4):366-71. 2011. [PubMed] | Journal Article |
Beskow LM, Burke W, Fullerton SM, Sharp RR . Offering aggregate results to participants in genomic research: opportunities and challenges. Genet Med, 14 (4):490-6. 2012. [PubMed] | Journal Article |
Beskow LM, Namey EE, Cadigan RJ, Brazg T, Crouch J, Henderson GE, Michie M, Nelson DK, Tabor HK, Wilfond BS . Research participants' perspectives on genotype-driven research recruitment. J Empir Res Hum Res Ethics, 6 (5):3-20. 2011. [PubMed] | Journal Article |
Shields, A. E., Burke, W. & Levy, D. E. Differential use of available genetic tests among primary care physicians in the United States: results of a national survey. Genet. Med. 10, 404–14 (2008). [PubMed Central] |
Journal Article |
Dressler LG, Smolek S, Ponsaran R, Markey JM, Starks H, Gerson N, Lewis S, Press N, Juengst E, Wiesner GL; GRRIP Consortium . IRB perspectives on the return of individual results from genomic research. Genet Med, 14 (2):215-22. 2012. [PubMed] | Journal Article |
Burke W, Kroese M, Zimmern R. Defining purpose: a key step in genetic test evaluation. Genet Med, 9(10):675-81. 2007 [PubMed] |
Journal Article |
Edwards KL, Lemke AA, Trinidad SB, Lewis SM et al. Genetics researchers' and IRB professionals' attitudes toward genetic research review: a comparative analysis. Genet Med, 14 (2):236-42. 2012. [PubMed] | Journal Article |
Burke W, Zimmern R. Moving Beyond ACCE: An Expanded Framework for Genetic Test Evaluation. A Paper for the United Kingdom Genetic Testing Network. 2007. [PHG Foundation] |
Journal Article |
McGrath, B. B. & Edwards, K. L. When family means more (or less) than genetics: the intersection of culture, family and genomics. J. Transcult. Nurs. 20, 270–7 (2009). [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 |
Kaye, J. et al. Research priorities. ELSI 2.0 for genomics and society. Science (80-. ). 336, 673–4 (2012). [PubMed] |
Journal Article |
Burke, W., Trinidad, S. B. & Clayton, E. W. Seeking Genomic Knowledge: The Case for Clinical Restraint. Hastings Law J. 64, 1650–1664 (2013). [PubMed Central] |
Journal Article |
Wang, C., Gordon, E. S., Norkunas, T., Wawak, L., Liu, C. T., Winter, M., . . . Bowen, D. J. (2016). A randomized trial Examining The Impact Of Communicating Genetic And Lifestyle Risks For Obesity. Obesity (Silver Spring), 24(12), 2481-2490. doi:10.1002/oby.21661 [PubMed] |
Journal Article |
Burke, W. et al. The translational potential of research on the ethical, legal, and social implications of genomics. Genet. Med. 17, 12–20 (2015). [PubMed] |
Journal Article |
James, R. et al. Exploring pathways to trust: a tribal perspective on data sharing. Genet. Med. 16, 820–6 (2014). [PubMed] |
Journal Article |
Segrest, V., James, R., Madrid, T. & Fernandes, R. Launching native health leaders: students as community-campus ambassadors. Prog. Community Heal. Partnerships 4, 81–6 (2010). [PubMed Central] |
Journal Article |
Roth, J. A. et al. Stakeholder perspectives on a risk-benefit framework for genetic testing. Public Health Genomics 14, 59–67 (2011). [PubMed Central] |
Journal Article |
Tarini, B. A., Tercyak, K. P., & Wilfond, B. S. (2011). Commentary: Children and predictive genomic testing: disease prevention, research protection, and our future. Journal of Pediatric Psychology, 36(10), 1113–21. doi:10.1093/jpepsy/jsr040 [PubMed] |
Journal Article |
Tarini, B. A., Burke, W., Scott, C. R., & Wilfond, B. S. (2008). Waiving informed consent in newborn screening research: balancing social value and respect. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 148C(1), 23–30. doi:10.1002/ajmg.c.30164 [PubMed] |
Journal Article |
Rohlfs, R. V, Fullerton, S. M. & Weir, B. S. Familial identification: population structure and relationship distinguishability. PLoS Genet. 8, e1002469 (2012). [PubMed Central] |
Journal Article |
Tabor, H. K., Berkman, B. E., Hull, S. C. & Bamshad, M. J. Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research. Am. J. Med. Genet. Part A 155A, 2916–24 (2011). [PubMed] |
Journal Article |
Burke, W . Commentary to "My Identical Twin Sequenced Our Genome": Cautionary Genomics.. J Genet Couns., 2017. [PubMed] (J Genet Couns. 2017 Apr;26(2):279-280. doi: 10.1007/s10897-016-0054-7. Epub 2016 Dec 20.) | Journal Article |
Fullerton SM. On the absence of biology in philosophical considerations of race. In Race and |
Book Chapter |
West KM, Blacksher E, Burke W. Genomics, Health Disparities, and Missed |
Journal Article |
Guzauskas, G. F., et al. (2012). "A risk-benefit assessment of prasugrel, clopidogrel, and genotype-guided therapy in patients undergoing percutaneous coronary intervention." Clin Pharmacol Ther 91(5): 829-837. [PubMed] [PubMed] |
Journal Article |
McGuire, A. L. & Burke, W. Health system implications of direct-to-consumer personal genome testing. Public Health Genomics 14, 53–8 (2011). [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 |
Fohner AE, Garrison NA, Austin MA, Burke W. . Carnitine palmitoyltransferase 1A P479L and infant death: policy implications of emerging data.. Genet Med, 19 (8):851-857. 2017. [PubMed] | Journal Article |
Goodman JL, Amendola LM, Horike-Pyne M, Trinidad SB, Fullerton SM, Burke W, Jarvik GP. . Discordance in selected designee for return of genomic findings in the event of participant death and estate executor.. Mol Genet Genomic Med, 5 (2):172-176. 2017. [PubMed] | Journal Article |
Lemke, A. A., Trinidad, S. B., Edwards, K. L., Starks, H. & Wiesner, G. L. Attitudes toward genetic research review: results from a national survey of professionals involved in human subjects protection. J. Empir. Res. Hum. Res. Ethics 5, 83–91 (2010). [PubMed Central] |
Journal Article |
Burke, W., N. Press, and L. Pinsky. "Breast Cancer Genetics from a Primary Care Perspective."Cancer. 1997; 80(3):621-626. |
Journal Article |
Durfy S.J., T.E. Buchanan and W. Burke. "Testing for Inherited Susceptibility to Breast Cancer: A Survey of Informed Consent Forms for BRCA1 and BRCA2 Mutation Testing." Am J Med Genet. 1998; 75: 82-7. [PubMed] |
Journal Article |
Durfy, S.J, D.J. Bowen, A. McTiernan, J. Sporleder, and W. Burke. "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] [Pubmed] |
Journal Article |
Pinsky, L.E. and R.A. Deyo. "Clinical Guidelines: A Strategy for Translating Evidence into Clinical Practice," in J. Geyman, R. Deyo and S. Ramsey, eds. Evidence-Based Clinical Practice: Concepts and Approaches. Woburn: Butterworth-Heinemann Medical, 2000. 177p |
Book Chapter |
Press, N.A., W. Burke, and S.J. Durfy. "How are Jewish Women Different From all Other Women? An Anthropological Perspective on Genetic Susceptibility Testing for Breast Cancer Among Ashkenazi Jewish Women." Health Matrix: Journal of Law-Medicine. 1997: 7(1): 135-162. [PubMed] |
Journal Article |
Bars J., J. Hull and W. Burke. "Breast Cancer." Genline, Roberta Pagon, Ed. 1998. |
Book Chapter |
Burke, W., N. Press and L. Pinsky. [Invited editorial] "BRCA1 and BRCA2: a small part of the puzzle." J Natl Cancer Inst. June 1999; 91(11): 904-905. [PubMed] |
Journal Article |
Press N.A., Burke W. "If You Care About Women's Health, Perhaps You Should Care About the Psychosocial Risks of Direct Marketing of Tamoxifen to Consumers." Effective Clinical Practice. 2000; 3(2): 98-103. |
Journal Article |
Press N.A., Yasui Y., Reynolds S., Durfy S.J., Burke W. "Women's Interest in Genetic Testing for Breast Cancer Susceptibility May be Based on Unrealistic Expectations." American Journal of Medical Genetics. 2001; 99: 99-110. |
Journal Article |
Burke W., Pinsky L.E., Press N.A. "Categorizing Genetic Tests to Identify Their Ethical, Legal, and Social Implications." American Journal of Medical Genetics. 2001; 106: 233-240 |
Journal Article |
Gardner, G. C. and L. E. Pinsky (1999). "Perception and attitude of medical school faculty toward participation in university-sponsored continuing medical education." 19(2): 122-128. [Ovid] [Full Text] |
Journal Article |
Coughlin, S. and W. Burke. "Public Health Issues in Genetic Testing for Predisposition to Cancer," in M.J. Khoury, W. Burke and E. Thomson, eds. Genetics and Public Health in the 21st Century. New York: Oxford University Press, 2000. 639p. |
Book Chapter |
Burke, W., M.J.E. Kahn, J.E. Garber, and F.S. Collins. "'First Do No Harm' also applied to cancer susceptibility testing." Cancer J Sci Amer. 1996; 2:150-152. [PubMed] |
Journal Article |
Burke W . Genetic testing. New Engl J Med, 347 (23):1867-75. 2002. [PubMed] | Journal Article |
Pinsky, L.E. "How to Interpret Sensitivity and Specificity," (p.24) in L. Burkholder, M. Migeon and D. Paauw, eds. Internal Medicine Clerkship Guide. St. Louis: Mosby Yearbook, 1999. |
Book Chapter |
Burke W., Olsen A.H., Pinsky L.E., Reynolds S.E., Press N.A. "Misleading Presentation of Breast Cancer in Popular Magazines." Effective Clinical Practice. March/April 2001; 4(2): 58-64. [PubMed] |
Journal Article |
Burke W., Pinsky L.E., Press N.A. "Categorizing Genetic Tests to Identify Their Ethical, Legal, and Social Implications." American Journal of Medical Genetics. Fall 2001; 106: 233-240. [PubMed] |
Journal Article |
Burke W, Culver J, Pinsky L, Hall S, Reynolds SE, Yasui Y, Press N . Genetic assessment of breast cancer risk in primary care practice. Am J Med Genet A, 149A (3):349-56. 2009. [PubMed] | Journal Article |
Ramsey, S. D., Burke, W. & Clarke, L. An economic viewpoint on alternative strategies for identifying persons with hereditary nonpolyposis colorectal cancer. Genet. Med. 5, 353–63 (2003). [PubMed Central] |
Journal Article |
Last updated: January 24, 2019