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ELSI Publications and Products

Ethical, Legal and Social Implications (ELSI) Program Publications and Products

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The Ethical, Legal and Social Implications (ELSI) Research Program funds and manages grants to support research and education projects that examine ELSI issues, and also supports workshops, research consortia and policy conferences related to these issues.

Between 1990 and 2001, the ELSI program devoted more than $86 million to support some 235 research and education projects and conferences. These ELSI grants and contracts have resulted in more than 550 peer-reviewed journal articles, books, newsletters, Web sites and television and radio programs. Those products are listed below, arranged by the principle investigator's (PI) last name. For further project descriptions, use the ELSI Research Program Abstracts and Activities Database search.

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Publications for Other ELSI Program Activities

Publications for Grants and Contracts

ADEBAMOWO, Clement "West African Bioethics Training Program"
Lee SS-J. Invited Review: Personalized Medicine and Pharmacogenomics: Ethical and Social Challenges. Personalized Medicine, 2(1):29-35. 2005.

Winkelman C. (accepted for publication, anticipated out in August). Invited topic. Inflammation and Genomics in the Critical Care Unit. Critical Care Nursing Clinics of North America.

ANDERSON, Gwen "Genetics in Nursing Literature and Continuing Education"
Anderson, G. "State of the science: Social, psychological, ethical nursing research in genetics." Biological Research for Nursing. 1999; 1(2): 133-146. [PubMed]

Anderson, G., Ed. Nursing Ethics: An International Journal for Health Care Professionals. Hadder Arnold Journals. 7(3): pp. 187-279. 2000.

Anderson, G., C. Yetter Read, R. Monsen. "Genetics, nursing and public policy: Setting an international agenda." Policy, Politics and Nursing Practice. 2000; 1(4): 245-255.

ANDREWS, Lori "Conceptual Frameworks for Genetics Policy"
Andrews, L.B. "Genetic Fallout: New Technologies Are Changing the Legal Landscape." Trial. 1995; 31(12): 20-27. [PubMed]

Andrews, L.B. "Prenatal Screening and the Culture of Motherhood." Hastings Law Journal. 1996; 47(4): 967-1006. [PubMed]

Andrews, L.B. "Compromised Consent: Deficiencies in the Consent Process for Genetic Testing." Journal of the American Medical Women's Association. 1997; 52(1): 39-42, 44. [PubMed]

Andrews, L.B. "Gen-etiquette: Are There Moral and Legal Responsibilities to Share Genetic Information within Families?" Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. Mark Rothstein, Ed. New Haven: Yale University Press, 1997.

Andrews, L.B. "Body Science." American Bar Association Journal. 1997; 83: 44-49.

Andrews, L.B. "Predicting and Punishing Anti-Social Acts." Behavioral Genetics: The Clash of Culture and Biology. R.A. Carson, M. Rothstein, F.E. Bloom, eds. Baltimore, MD; Johns Hopkins University Press, 224p. May 1999.

Andrews, L.B. "Past as Prologue: Sobering Thoughts about Genetic Enthusiasm." Seton Hall Law Review. 1997; 27(3): 893-918. [PubMed]

"Legal Issues in the Regulation and Use of Genetic Testing." in Stanford Working Group on Breast Cancer Final Report. [Forthcoming]

ARAR, Nedal "Beliefs and Attitudes Towards Hereditary Prostate Cancer"
Plaetke R., Thompson I., Sarosdy M., Harris J.M., Troyer D., Arar, N.H. "Genetic fieldwork for hereditary prostate cancer studies." Urologic Oncology. 2002; 7(1): 19-27. [PubMed]

ARAR, Nedal "Cultural and Ethical Issues in Genetic Family Studies"
Arar N.H., Plaetke R., Arar M.Y. et al. "Incorporating the Contextual Assessment Approach to regimens used in genetic family studies." Genetics in Medicine. 2002; 4(6): 451-63. [PubMed]

Arar N.H., Hazuda H.P., Plaetke R. et al. "Familial Clustering of Diabetic Nephropathy: Perceptions and Risk Recognition Among Mexican-American Patients With a Family History of Diabetes." Diabetes Spectrum. 2003; 16(3): 136-142.

ARMSTRONG, Katrina "Distrust, Race/Ethnicity, and Predictive Genetic Testing"
Peters, N., Rose, A., Armstrong, K. "The Association between Race and Attitudes about Predictive Genetic Testing." Cancer Epidemiology Biomarkers & Prevention . 2004; 13(3): 361-5. [PubMed]

ARONOWITZ, Robert "History of Breast Cancer Risk, 1900-Present"
Aronowitz, RA. The dilemma of genetic testing: the "breast cancer gene" and the physician's role, as ethics case study. ACP Observer, 18(3):1. 1998.

Aronowitz RA. Do not delay: Great cancer and Time, 1900-1970. Milbank Quarterly, 79(3):355-386. 2001. [PubMed]

Aronowitz RA. An Unnatural History of Breast Cancer. Cambridge University Press. 2007.

ASCH, David "How Much Information about the Risk of Cystic Fibrosis Do Couples Want to Know?"
Asch, D. and J.C. Hershey. "Why Some Health Policies Don't Make Sense at the Bedside." Annals of Internal Medicine. 1995; 122(11): 846-50. [PubMed]

Asch, D. et al. "Genetic Screening for Reproductive Planning: Methodological and Conceptual Issues in Policy Analysis." American Journal of Public Health. 1996; 86(5): 684-90. [PubMed]

ASCH, David "Prescriptive Decision Modeling for Cystic Fibrosis Screening"
Asch, D. et al. "Clarification Needed to Cystic Fibrosis Model." American Journal of Obstetrics and Gynecology. 1993; 168; 1358-9. [PubMed]

Asch, D. et al. "Reporting the Results of Cystic Fibrosis Carrier Screening." American Journal of Obstetrics and Gynecology. 1993: 168(1, Part 1); 1-6. [PubMed]

Asch, D.A., J.C. Hershey, M.L. DeKay et al. "Carrier Screening for Cystic Fibrosis: Costs and Clinical Outcomes." Medical Decision Making. 1998; 18(2): 202-12. [PubMed]

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BAILEY, Donald "ELSI Scale-Up: Large Sample Gene Discovery & Disclosure"
Torke AM, Corbie-Smith G, Branch WT. African American patients' perspectives on medical decision making. Archives of Internal Medicine, 164(5):525-30. 2004. [PubMed]

Corbie-Smith G, Moody-Ayers S, Thrasher A. Closing the circle: Minority inclusion in research and reduction of health disparities. Archives of Internal Medicine, 164(13):1362-4. 2004. [PubMed]

Van Riper M, Gallo A. Family, health, and genomics. In DR Crane & ES Marshall (Eds.), Handbook of families and health: Interdisciplinary perspectives. Thousand Oaks: Sage Publications Inc. 2005.

Van Riper M. Genetic testing and the family. Journal of Midwifery and Women's Health, 50: 227-233. 2005. [PubMed]

Rothschild BB, Estroff SE, Churchill LR. The cultural calculus of consent. Clinical Obstetrics and Gynecology, 48(3), 574-94. 2005. [PubMed]

Bailey DB, Skinner D, Warren SR. Newborn Screening for Developmental Disabilities: Reframing Presumptive Benefit. American Journal of Public Health, 95(11):1889-1893. 2005. [PubMed]

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]

Skinner D, Schaffer R. Families and genetic diagnoses in the genomic and Internet age. Infants & Young Children, 19:16-24. 2006.

Van Riper M. Ethical, legal, and social implications. In M.S. Runge & W.C. Patterson (Eds.), Principles of molecular medicine. Pp. 61-68). Totowa, NJ: Humana Press Inc. 2006.

Van Riper M. Family nursing in the era of genomic health care: We should be doing so much more! Journal of Family Nursing, 12: 111-118. 2006. [PubMed]

Sterling R, Henderson GE, Corbie-Smith G. Public Willingness to Participate in and Public Opinions About Genetic Variation Research: A Review of the Literature. American Journal of Public Health, 96(11):1971-78. 2006. [PubMed]

Bailey DB, Beskow LM, Davis AM, Skinner D. Changing Perspectives on the Benefits of Newborn Screening. Mental Retardation and Developmental Disabilities Research Reviews, 12:270-279. 2006. [PubMed]

Whitmarsh I, Davis AM, Skinner D, Bailey DB. A place for genetic uncertainty: Parents valuing an unknown in the meaning of disease. Social Science & Medicine, 65:1082-1093. 2007. [PubMed]

Skinner D, Weisner T. Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13(4):302-12. 2007. [PubMed]

King NMP. Genes and TS: What will they tell us? Scientific, ethical, and social implications. In Walkup, J. (ed.): AIN: Tourette Syndrome. Lippincott Williams & Wilkins. [In Press]

King NMP, Churchill LR. Assessing and comparing potential benefits and risks of harm. In Oxford textbook of clinical research ethics, E Emanuel, D Wendler, R Crouch (Eds.). Oxford University Press. [In Press]

King NMP. The glass house: Assessing bioethics. In The ethics of bioethics. L Eckenwiler, F Cohn (Eds). Johns Hopkins University Press. [In Press]

Schaffer R, Kuczynski K, Skinner D. Producing genetic knowledge and citizenship through the Internet: Mothers, pediatric genetics, and cybermedicine. Sociology of Health and Illness, 30(1):145-149. 2008. [PubMed]

Bailey D, Skinner D, Davis A, Whitmarsh I, Powell C. Concerns about expanded newborn screening: Fragile X syndrome as a prototype for emerging issues. Pediatrics, 121(3):693-704. 2008 [PubMed]

BIESECKER, Barbara Bowles "A Conference on Human Genome Research Implications"
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]

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.

Rapp, R. "Amniocentesis in Sociocultural Perspective." Journal of Genetic Counseling. 1993; 2(3): 183-196. [PubMed]

Smith, A.C.M. "Update on Master's Genetic Counseling Training Programs: Survey of Curriculum Content and Graduate Analysis Summary." Journal of Genetic Counseling. 1993; 2(3): 197-211.

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.

Weil, J. and Mittman, I. "A Teaching Framework for Cross-Cultural Genetic Counseling." Journal of Genetic Counseling. 1993; 2(3): 159-69.

BLACKER, Deborah "Genetic Knowledge and Attitudes in Alzheimer's Disease"
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.

Blacker, D. "New Insights into Genetic Aspects of Alzheimer's Disease: Does Genetic Information Make a Difference in Clinical Practice?" Postgrad Med. 2000; 108(5): 119-22, 125-6, 129. [PubMed]

Tanzi, R.E. and D. Blacker. "Genetic Screening in Alzheimer's Disease: Usefulness, limits, and future prospects." Generations. 2001; 24(1): 58.

BLUMENTHAL, David "Academic-Industry Relationships in Genetics"
Blumenthal, D. "Academic-Industry Relationships in the Life Sciences." JAMA. 1992; 268(23): 3344-3349. [PubMed]

Blumenthal, D. "Growing Pains for New Academic/Industry Relationships." Health Affairs. 1994; 13(3): 176-193. [PubMed]

Campbell, E.G., Clarridge, B.R., Gokhale, M. et al. "Withholding Research Results in Academic Life Science." JAMA. 1997; 277(15): 1224-1228. [PubMed]

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]

BLUMENTHAL, David "Data-Sharing and Data-Withholding in Genetics Research"
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]

BOTKIN, Jeffrey "Behavioral and Psychosocial Effects of BRCA1 Testing"
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]

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.

Botkin, J.R. "Ethical Issues and practical problems in preimplantation genetic diagnosis." American Journal of Law, Medicine and Ethics. 1998; 26: 17-28.

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.

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.

Smith, K.R, J. West, R. Croyle, J.R. Botkin. "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. 1999 April; 8(4 Pt 2): 385-92.

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.

Hamann H.A., Croyle R.T., Venne V.L., Baty B., Smith K.R., Botkin J.R. "Attitudes toward the genetic testing of children among individuals tested for a BRCA1 gene mutation." American Journal of Medical Genetics. 2000; 92: 25-32.

Zick C.D., Smith K.R., Mayer R.N., Botkin J.R. "Genetic testing, adverse selection, and the demand for life insurance." American Journal of Medical Genetics. 2000; 93: 29-39.

BOTKIN, Jeffrey "Ensuring Confidentiality in the Publication of Pedigrees"
Botkin J. "Fetal privacy and confidentiality." Hastings Center Report. 1995; 25(5): 32-40.

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; 19:207-208. Byers PH, Ashkenas J. "Pedigrees - Publish? or Perish the Thought" AJHG 1998; 63: 678; "Publication of Pedigrees" Oncology Times 1998; 20: 19-20.]

BOTKIN, Jeffrey "Genetic Testing and Screening for Mental Health Disorders"
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.

BOTKIN, Jeffrey "Prenatal Diagnosis and the Selection of Children"
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.)

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.

Botkin J.R. "Wrongful life and wrongful birth actions." In the Encyclopedia of Ethics, Legal, and Policy Issues in Biotechnology. John Wiley and Sons, 2000.

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.

Botkin J.R. "Preimplantation genetic diagnosis and the biologic selection of children." Kaiser Permanente Newsletter, January 2002.

Botkin J.R. "Wrongful life and wrongful birth: ethical and legal issues in prenatal diagnosis." Florida State University Law Review (In press).

BOWEN, Deborah "Counseling Strategies for Breast Cancer Risk"
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]

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]

McTiernan A., Kuniyuki A., Yasui Y., et al. "Comparisons of two breast cancer risk estimates in women with a family history of breast cancer." Cancer Epidem Biomar. 10(4): 333-338 April 2001.

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.

Bowen D.J., Ludman E., Press N., et al. "Achieving utility with family history - Colorectal cancer risk." Am J Prev Med. 24(2): 177-182 February 2003.

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.

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.

BROWN, R. Steven "State Governments and the Human Genome Project"
Brown, R.S. "The State Response to Genetic Research." Journal of State Government. Jul-Sep 1991; 64(3): 98-99.

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.

Brown, R.S. "State Governments and the Human Genome Project." Genetic Resource. 1992; 6(2): 19-21.

BROWNER, Carole "Genetic Counseling Strategies with Mexican-Origin Women"
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.

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.

Preloran HM, Balzano S, Browner CH. "The Roles of Trust and Cross-Cultural Miscommunication in Clinical Decision-Making." Californian Journal of Health Promotion. 2003; 1(2):198-207.

Preloran HM, Browner CH, Balzano S. "Globalizacion y salud: El impacto de un protocolo medico sin fronteras." (Globalization and Health: The Impact of a Medical Protocol Without Borders). Revista Anual Realidad del Cono Sur. 2005 (Buenos Aires: Universidad Argentina John F. Kennedy).

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. (In press)

Browner CH, Preloran HM. "Entering the Field: Recruiting Latinos for Ethnographic Work." In, Richard Wright, ed. Handbook of Fieldwork. London: Sage. (In press)

Preloran HM, Browner CH, Lieber E. "Impact of Interpreters' Approach on Latinas' Use of Amniocentesis." Special Issue on Public Health Genetics, Health Education and Behavior. (In press)

BROWNER, Carole "Use of Amniocentesis by Mexicans and Mexican-Americans"
Preloran, H.M. and C.H. Browner. "Paternidad Prenatal: parejas de origen mexicano decidiendo sobre el uso del diagnostico fetal." Revisa Anual de Investigaciones Folkloricas. 1997; 12.

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.

Browner, C.H. and Preloran, H.M. "Male Partners' Role in Latinas' Amniocentesis Decisions." Journal of Genetic Counseling. 1999; 8(2): 85-108.

Preloran, H.M., Browner, C.H., and Balzano, S. "Texto y contexto en el analisis de la narrativa: Renegociación de roles en situaciones médicas con peligro de vida." Scripta Ethnologica. 1999; 20: 23-36. (Buenos Aires: Centro Argentino de Ethnologia Americana).

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.

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.

Browner CH. "Situating Women's Reproductive Activities." American Anthropologist. 2000; 102(4):773-88.

Browner, C.H. and Preloran, H.M. "Latinas, Amniocentesis and the Discourse of Choice." Culture, Medicine, and Psychiatry. 2000; 24(3): 353-75.

Browner, C.H. and Preloran, H.M. "Interpreting Low-Income Latinas' Amniocentesis Refusals." Hispanic Journal of Behavioral Sciences 2000; 22(3): 346-68.

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.

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.

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.

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.

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.

BUCHANAN, Allan "The Human Genome Initiative and Limits of Ethical Theory"
Buchanan, A.E., D.W. Brock, N. Daniels, and D. Wickler. From Chance to Choice: Genetics & Justice. Cambridge, UK: Cambridge University Press, 2000. 398p.

BULGER, Ruth "Predicting Future Disease: Issues in the Development, Application, and Use of Tests for Genetic Disorders"
Institute of Medicine Committee on Assessing Genetic Risks. Assessing Genetic Risks: Implications for Health and Social Policy. eds. L.B. Andrews et al. Washington, DC: National Academy Press, 1994. 338p.

BURHANSSTIPANOV, Linda "Genetic Education for Native Americans"
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.

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]

Burhansstipanov L., Bemis L., Dignan M. "Native American Cancer Education: Genetic and Cultural Issues." J Cancer Education. 2001a: 16(3); 142-145. [PubMed]

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]

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]

Dignan M.B., Burhansstipanov L., Bemis L. "Genetic Education for Native Americans - Evaluation Methodology and Results." Genetics. February 2005: 169: 317-321.

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]

Burhansstipanov L., Bemis L., Dignan M. "e;Native American Recommendations for Genetic Research to Be Culturally Respectful." Jurimetrics. 2002: 42(2);149-157. [PubMed]

BURKE, Wylie "Evaluating Use of Genetic Information: A Model Process"
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.

BURKE, Wylie "Genetic Susceptibility Testing for Breast Cancer"
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.

Burke, W., N. Press, and L. Pinsky. "Breast Cancer Genetics from a Primary Care Perspective."Cancer. 1997; 80(3):621-626.

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.

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.

Bars J., J. Hull and W. Burke. "Breast Cancer." Genline, Roberta Pagon, Ed. 1998.

Burke, W. and M.B. Laya. [Invited editorial] "Cancer genetics and survival; another link in the chain of evidence." J Natl Cancer Inst. 1999; 91: 201-3.

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.

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]

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.

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

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.

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.

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.

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

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.

Gardner, G.C. and L.E. Pinsky. "Perception and Attitude of Medical School Faculty Toward Participation in University Sponsored Continuing Medical Education." J Cont Educ Health Prof. (In press).

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BURKE, Wylie "Genomic Health Care and the Medically Underserved"
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Fryer-Edwards K, Fullerton SM. Relationships with test-tubes: where's the reciprocity? American Journal of Bioethics, 6(6):36-38. 2006 [PubMed]

Haga SB, Thummel KE, Burke W. Adding pharmacogenetics information to drug labels: lessons learned. Pharmacogenet Genomics, 16(12):847-854. 2006. [PubMed]

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Burke W, Psaty BM. Personalized medicine in the era of genomics. JAMA, 298(14):1682-4. 2007. [PubMed]

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]

James RD, Yu JH, Henrikson NB, Bowen DJ, & Fullerton SM. Strategies and stakeholders: minority recruitment in cancer genetics research. Community Genetics. [In Press]

Fullerton SM. On the absence of biology in philosophical considerations of race. In Race and Epistemologies of Ignorance, eds. S Sullivan and N Tuana, SUNY Series on Philosophy and Race, eds. R Bernasconi and TD Sharpley-Whiting, SUNY Press: Albany, NY. [In Press]

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Tarini B, Burke W, Wilfond B. Waiving informed consent in newborn screening research: balancing social value and respect. Am J Med Genet, 148(1):23-30. 2008. [PubMed]

Jaja C, Burke W, Thummel K, Edwards K, Veenstra DL. Cytochrome P450 enzyme polymorphism frequency in Indigenous and Native American populations: A systematic review. Commun Genet, 11(3):141-9. 2008. [PubMed]

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]

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BURKE, Wylie "Guiding Clinicians in Genetic Assessment of Cancer Risk"
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Spanier B.W.M., Bruno M.J., Burke W., et al. "Genetic testing." New Engl J Med. 348(11): 1066-1066 March 13, 2003.

Burke W., Pagon R.A. "Genetic testing - Reply" New Engl J Med 348(11): 1067-1067 March 13, 2003.

Ramsey S.D., Burke W., Clarke L. "An economic viewpoint on alternative strategies for identifying persons with hereditary nonpolyposis colorectal cancer." Genetics in Medicine. September/October 2003; 5(5): 353-363.

BURNS, Joan "Partnership for Genetic Services"
Davidson M., David K., Hsu N., Pollin T., Weiss J., Wilker N., Wilson M. "Consumer Perspectives on Genetic Testing: Lessons Learned." Genetics and Public Health in the 21st Century. Khoury M.J., Burke W., Thomson E.J., eds. Oxford University Press, New York, 579-602.

Wilker, N.L., M.E. Davidson, C. Holmes et al. Report to NYLCare Health Plans Medical Affairs Department: Opportunities to Enhance NYLCare's Genetics Service Delivery System. June 1998. 26pp.

Davidson M., Weingarten K., Pollin T., Wilson M., Wilker N., Hsu N., Weiss J. "Consumer Perspectives on Genetic Testing: Implications for bulding family-centered public policies." Families, Systems & Health: The Journal of Collaborative Family HeathCare. Summer 2000; 18(2): 217.

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