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ELSI Publications and Products
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.
A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
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Publications for Other ELSI Program Activities |
Publications for Grants and Contracts
ADEBAMOWO, Clement "West African Bioethics Training Program"
Fanshawe, TR., Prevost, AT, Roberts, JS, Green, RC, Armstrong, D, Marteau, TM. Explaining Behavior Change after Genetic Testing: The Problem of Collinearity between Test Results and Risk Estimates. Genetic Testing, 12(3):381-386. 2008. [PubMed Central]
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.
AMUNDSON, Ronald "Why Do Disability Activists Reject the Genome Project?"
Admunson, R, Tresky, S. Bioethics and disability rights: Conflicting values and perspectives. Journal of Bioethical Inquiry, 5(2-3):111-123. 2008.
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).
BOTKIN, Jeffrey "Methods for Promoting Public Dialogue on the Use of Residual Newborn Screening"
Lewis, M. H., Goldenberg, A., Anderson, R., Rothwell., E and Botkin, J. R. State laws regarding the retention and use of residual newborn screening blood samples. Pediatrics, 127:703-712. 2011. [PubMed]
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"
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]
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.
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).
Koenig, B.A. and N.A. Press. "Desperately seeking narratives of genetic testing for breast cancer." Bioethics in Context. Barry Hoffmaster, Ed. Oxford University Press. (To be published)
BURKE, Wylie "Genomic Health Care and the Medically Underserved"
Burke W, Press N. Ethical obligations and counseling challenges in cancer genetics. J Natl Compr Canc Netw, 4(2):185-91. 2006. [PubMed]
Burke W, Press N. Genetics as a tool to improve cancer outcomes: ethics and policy. Nat Rev Cancer, 6(6):476-82. 2006. [PubMed]
Carlsten C, Burke W. Potential for genetics to promote public health: genetics research on smoking suggests caution about expectations. JAMA, 296:2480-2. 2006. [PubMed]
Fryer-Edwards K, Fullerton SM. Relationships with test-tubes: where's the reciprocity? American Journal of Bioethics, 6(6):36-38. 2006 [PubMed]
Fryer-Edwards K, James R, Fullerton SM, Burke W. Response to NIH GWAS RFI: Comments re: NIH Proposed Policy for Sharing of Data from Genome-wide Association Studies. Submitted to NIH, Nov. 30, 2006.
Haga SB, Thummel KE, Burke W. Adding pharmacogenetics information to drug labels: lessons learned. Pharmacogenet Genomics, 16(12):847-854. 2006. [PubMed]
Paradies YC, Montoya MJ, Fullerton SM. Racialized Genetics and the Study of Complex Diseases: the thrifty genotype revisited. Perspectives in Biology and Medicine, 50(2):203-227. 2007. [PubMed]
Henrikson NB, Burke W, Veenstra DL. Ancillary risk information and pharmacogenetic tests: social and policy implications. The Pharmacogenomics Journal, 8:85-89. 2008. [PubMed]
Burke W, Zimmern R. Moving Beyond ACCE: An Expanded Framework for Genetic Test Evaluation. A Paper for the United Kingdom Genetic Testing Network. 2007. [Full Text]
Burke W, Kroese M, Zimmern R. Defining purpose: a key step in genetic test evaluation. Genet Med, 9(10):675-81. 2007 [PubMed]
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]
Carlson RJ. Pre-emptive public policy for genomics. Journal of Public Health, Policy and Law, 33:39-51. 2008. [PubMed]
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]
Burke W, Holland S, Kuszler P, Starks H, Press N. Translational genomics: Seeking a shared vision of benefit. Am J Bioeth, 8:54-6. 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]
James RD, Yu JH, Henrikson NB, Bowen DJ, & Fullerton SM. Strategies and stakeholders: minority recruitment in cancer genetics research. Community Genetics. 11(4):241-9. 2008. [PubMed]
Shields AE, Burke W, Levy DE. The use of available genetic tests among minority-serving physicians in the US. Genet Med, 10:404-14. 2008. [PubMed]
Haga SB, Burke W. Pharmacogenetic testing: not as simple as it seems. Genet Test, 10:391-5. 2008. [PubMed]
Yu J-H, Goering S, Fullerton M. Race Based Medicine and Justice as Recognition: Exploring the Phenomenon of BiDil. Cambridge Quarterly of Health Care Ethics, 2008. [In Press]
Caulfield, T, Fullerton, SM, Ali-Khan, SE, Arbour, L, Burchard, EG, Cooper, R, Hardy, BJ, Harry, S, Hyde-Lay, R, Kahn, J, Kittles, R, Koenig, B, Lee, SSJ, Malinowski, M, Ravitsky, V, Sankar, P, Scherer, SW, Séguin, B, Shickle, D, Suarez-Kurtz, G, & Daar, AS. Race and ancestry in biomedical research: exploring the challenges. Genome Medicine, [In Press]
Veenstra DL, Burke W. Pharmacogenomics and public health. Public Health Genom, 2008. [In Press]
Shields, AE, Fullerton, SM, & Olden, K. Genes, environment, and cancer disparities. In Dimensions of Cancer Disparities, ed. H.. Koh, Springer: New York, NY, In Press.
BURKE, Wylie "Guiding Clinicians in Genetic Assessment of Cancer Risk"
Burke W. "Genomic medicine: Genetic testing." New Engl J Med 347(23): 1867-1875 December 5, 2002
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.
BURKE, Wylie "Center for Genomics and Healthcare Equality"
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. May 10, 2007. 284p.
Haga, S, Burke, W. Pharmacogenetic testing: not as simple as it seems. Genetics in Medicine, 10(6):391-395. 2008. [PubMed]
McGrath, BB, Edwards, KL. When Family Means More (or Less) Than Genetics: The Intersection of Culture, Family, and Genomics. Journal of Transcultural Nursing, 20(3):270-277. 2009. [PubMed Central]
BURNS, Joan "Partnership for Genetic Services"
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.
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.
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Tercyak K.P., Streisand R., Peshkin B.N., Lerman C. "Psychosocial impact of predictive testing for illness on children and families: Challenges for a new millennium." Journal of Clinical Psychology in Medical Settings, 2000; 7: 55-68.
Peshkin B.N., DeMarco T.A., Brogan B.M., Lerman C., Isaacs C. "BRCA1/2 testing: complex themes in result interpretation." J Clin Oncol, 2001; 19: 2555-65.
Tercyak K.P., Lerman C., Peskin B.N., Hughes C., Main D., Isaacs C., Schwartz M.D. "Effects of Coping Style and Test Result on Anxiety among Women Participating in Genetic Counseling and Testing for Breast/Ovarian Cancer Risk." Health Psychology. 2001; 20: 217-222.
Tercyak K.P., Peshkin B.N., Streisand R., Lerman C. "Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants." Psycho-Oncology. 2001; 10: 336-346.
Hughes C., Lerman C., Schwartz M., Peshkin B.N., Wenzel L., Narod S., Corio C., Tercyak K.P., Hanna D., Isaacs C., Main D. "All in the Family: Evaluation of the process and content of sister's communication about BRCA1 and BRCA2 genetic test results." American Journal of Medical Genetics. 2002; 107(2): 143-150.
Hughes C., Lerman C., Schwartz M., Peshkin B.N., Wenzel L., Narod S., Corio C., Tercyak K.P., Hanna D., Isaacs C., Main D. "All in the Family: Evaluation of the process and content of sister's communication about BRCA1 and BRCA2 genetic test results." American Journal of Medical Genetics. 2002; 107(2): 143-150.
Lerman C., Croyle R.T., Tercyak P., Hamann H. "Genetic testing: Psychological aspects and implications." Journal of Consulting and Clinical Psychology. June 2002; 70(3): 784-797.
"Care and Understanding: A Telephone Counseling Program for Women Who Have a BRCA1 or BRCA2 Gene Alteration." The Cancer Assessment and Risk Evaluation Program Care Kit. (Educational materials on (1) Managing Family Concerns, (2) Making Medical Decisions, (3) Emotional Responses to Genetic Testing, and (4) Strategies to Help Cope with Stressors Related to Genetic Test Results.)
Cella D., Hughes C., Peterman A., Chang C.H., Peshkin B.N., Schwartz M.D., Wenzel A., Lemke A., Marcus A., Lerman C. "A Brief Assessment of Concerns Associated with Genetic Testing for Cancer: The Multidimensional Impact of Cancer Risk Assessment (MICRA) Questionnaire." Health Psychology. (accepted for publication)
Hughes-Halbert, C., Wenzel, L., Lerman, C. et al. "Predictors of Participation in Psychosocial Telephone Counseling following Genetic Testing for BRCA1 and BRCA2 Mutations." Cancer Epidemiology, Biomarkers & Prevention. May 2004; 13(5): 875-881.
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IONNO, Sandra "SPUSA 1999 International Conference Genetic Portions"
Mind-full: A Brainsnack for Future Leaders with Ethical Appetites: Volume Two. Washington, DC: Student Pugwash USA, May 1999.
Science and Social Responsibility in the New Millennium: Conference Report. Washington, DC: Student Pugwash USA, June 1999.
Science and Social Responsibility in the New Millennium: Conference Report. Washington, DC: Student Pugwash USA, June 2000.
Nash, Audrey et. al (editors). "Science and Social Responsibility in the New Millennium Conference Proceedings." Washington, DC: Student Pugwash USA. Summer 2000.
Higman, Susan M. "Science and Social Responsibility in the New Millennium: Evaluation of Student Pugwash USA's 20th Anniversary Conference and Measurement of the Organization's Impact on Participants (Final conference assessment)." Baltimore, MD: June 29, 2000.
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JAYARATNE, Toby "Beliefs among Whites and African-Americans about Genetic Causes for Gender, Class and Race Differences: Social-Political Educational Implications"
Lanie, A.D., Jayaratne, T.E., Sheldon, J.P., et al. "Exploring the public understanding of basic genetic concepts." Journal of Genetic Counseling. 2004; 13(4): 305-320.
Jayaratne, T.E., Ybarra, O., Sheldon, J.P., Brown, T.N., Feldbaum, M., Pfeffer, C.A., Petty, E.M. "White Americans' Genetic Lay Theories of Race Differences and Sexual Orientation: Their Relationship with Prejudice toward Blacks, and Gay Men and Lesbians." Group Processes & Intergroup Relations. 2006; 9(1): 77-94.
Sheldon JP, Jayaratne TE, Feldbaum MB, DiNardo CD, Petty EM. Applications and Implications of Advances in Human Genetics: Perspectives from a Group of Black Americans. Community Genet, 10:82?92. 2007. [PubMed]
Cole ER, Jayaratne TE, Cecchi LA, Feldbaum MB, Petty EM. Vive La Difference? Genetic Explanations for Perceived Gender Differences in Nurturance. Sex Roles Springer Science. 57(3-4):211-22. 2007.
JONSEN, Albert "A Paradigm Approach to Ethical Problems in Genetics"
Durfy, S.J. "Ethics and the Human Genome Project." Archives of Pathology and Laboratory Medicine. May 1993: 117(5); 466-469.
Jonsen, A.R. "Genetic Testing, Individual Rights, and the Common Good." In: Duties to Others, eds. C. Campbell and A. Lustig. Boston: Kluwer Academic, 1994. 319p.
Callahan, T.C.; S.J. Durfy; and A.R. Jonsen. "Ethical Reasoning in Clinical Genetics: A Survey of Cases and Methods." Journal of Clinical Ethics. Fall 1995: 6(3); 248-253.
Jonsen, A.R. "The Impact of Mapping the Human Genome on the Patient Physician Relationship." In: The Human Genome Project and The Future of Health Care, eds. T.H. Murray, M. Rothstein, and R. Murray. Bloomington: Indiana University Press, 1996. 248p.
JUENGST, Eric "Anticipating Enhancement: Ethical, Legal and Social Issues"
Juengst, E.T. "Can Prevention be Distinguished from Enhancement in Genetic Medicine?" Journal of Medicine and Philosophy. 1997; 22: 125-142.
Whitehouse, P.J., E.T. Juengst, T.H. Murray and M.J. Mehlman. "Enhancing Cognition in the Intellectually Intact." The Hastings Center Report. May-June 1997; 27: 14-23.
Juengst, E.T. "What Does Enhancement Mean?" p. 29-47, in Enhancing Human Traits: Ethical and Social Implications, E. Parens, Ed. Washington, DC: Georgetown University Press, 1998.
Juengst, E.T. and L. Walters. "Ethical Issues in Human Gene Transfer Research." p. 691-712, in The Development of Human Gene Therapy, T. Friedman, Ed. Cold Spring Harbor, NY: Cold Spring Harbor Laboratory Press, 1999.
Juengst, E.T. "Anticipating Enhancement: A Conceptual and Ethical Challenge for Gene Therapy Regulation." p.97-109, in Gene Therapy and Ethics, A. Nordgren, Ed. Uppsala: Acta Universitatis Upsaliensis, 1999.
Juengst, E.T. "Concepts of Disease after the Human Genome Project." p. 125-152, in Ethics and Values in Health Care on the Frontiers of the Twenty-First Century, S. Wear and James (eds.) (Bono Philosophy and Medicine Book Series, Volume ) Uppsala: Uppsala University Library, 1999.
Mehlman, M.J. "How Will We Regulate Genetic Enhancement?" Wake Forest Law Review. Fall 1999; 34(3): 671-714.
Mehlman, M.J. "The Human Genome Project and the Courts: Gene Therapy and Beyond." Judicature. November-December 1999; 83(3): 124-130.
Mehlman, M.J. "The Law of Above Averages: Leveling the New Genetic Enhancement Playing Field." Iowa Law Review. 2000; 85: 124-130.
Juengst, E.T. "Enhancement: Ethical Issues." in The Encyclopedia of Ethical, Legal and Political Issues in Biotechnology, T. Murray and M. Mehlman, (eds.) New York: John Wylie & Sons, 2000. (In press).
Mehlman, M.J. "Genetic Enhancement and the Regulation of Acquired Genetic Advantages." in The Encyclopedia of Ethical, Legal and Political Issues in Biotechnology, T. Murray and M. Mehlman, (eds.) New York: John Wylie & Sons, 2000. (In press).
Juengst, E.T. and E. Parens. "Germ-line Dancing: Definitional Considerations for Science Policy Makers." In Points to Consider Regarding Inherited Genetic Modifications in Human Beings, A. Chapman and M. Frankel (eds.) Washington, DC: AAAS. (In press).
JUENGST, Eric "Center for Genetic Research, Ethics, and Law (CGREAL)"
Hoffman S. "In There a Place for 'Race' as a Legal Concept?" Arizona State Law Journal. 2004; 36(4): 1093-1159.
Juengst, E., Ponsaran, R. "Normal aging, disease prevention and medical ethics." Public Policy and Aging Report 2004: 14-18.
Juengst ET. "FACE facts: Why human genetics will always provoke bioethics." J Law Med Ethics 2004; 32(2):267-75, 191. [PubMed]
Davis, D.S. "Genetic Research & Communal Narratives." Hastings Center Report. 2004; 34(4):40-49. [PubMed]
Gaines, A.D, Race: Local biology and culture in mind. Chapter 15. Casey, C., Edgerton, R.B. (eds.) A Companion to Psychological Anthropology. Blackwell. pp. 274-97. 2005.
Hoffman S, Berg J. The Suitability of IRB Liability. University of Pittsburgh Law Review, 67(2):365-428. 2005.
Mehlman, M.J. "Genetic Enhancement: Plan Now to Act Later." Kennedy Institute of Ethics Journal. 2005; 15(1): 77-82. [PubMed]
Hoffman, S. "Racially-tailored medicine unraveled". American University Law Review. 2005; 55(2): 395-452. [PubMed]
Macklin, R., Juengst, E.: Genetic and reproductive technologies. In The Encyclopedia of Philosophy, 2nd Edition. Thompson Gale. 2006.
Davis D. Genetic Testing and Tort Actions. In Genetic Testing: Care, Consent, and Liability. N.F. Sharpe and R.F, eds. Carter. Hoboken, N.J. , Wiley-Liss: 107-127. 2006.
Juengst, E. "Altering the human species? Misplaced essentialism in science policy," In Rasko, J., O'Sullivan, G. and Ankeny, R. (eds.), The Ethics of Inheritable Genetic Modification: A Dividing Line? Cambridge: Cambridge University Press. pp. 149-58. 2006
Juengst, E. and Goldenberg, A.: Genetic diagnostic, pedigree and screening research. In Emanuel, E. and Crouch, R. (eds.) The Oxford Textbook of Clinical Research Ethics. Oxford. 2006. [In Press]
Juengst, E.: Population-based Genetic Research and Screening: Conceptual and Ethical Issues. In The Handbook of Bioethics. B. Steinbook(ed.). Oxford, Oxford University Press: 471-491. 2006.
Marshall, P.: Ethical Issues in Research Design and Informed Consent in Resource Poor Countries. World Health Organization. 2006.
Marshall P, Berg J. Protecting Communities in Biomedical Research. American Journal of Bioethics, 6(3): 28-30. 2006. [PubMed]
Dressler L, Juengst E. Thresholds and boundaries in the disclosure of individual genetic research results. American Journal of Bioethics, 6:18-20. 2006. [PubMed]
Hoffman S, Podgurski A. Securing the HIPAA Security Rule. Journal of Internet Law, 10(1). 2007.
Davis D. The changing face of misidentified paternity. Journal of Medicine and Philosophy. [In Press]
Dressler L. Control and Use of Banked Human Specimens in Research. Biospecimen
Ownership Counterpoint. Journal of Cancer Epidemiology, Prevention and Biomarkers, 16(2):190-191. 2007. [PubMed]
Winkelman C, Higgins PA, Chen Y-J K, Levin A. Cytokines in chronically critically ill patients after activity and rest. Biologic Research for Nursing, 8(4):261-71. 2007. [PubMed]
Natowicz M, Kass N, et al. Access to Health Insurance: Experiences and Attitudes of those with Genetic versus Non-genetic Medical conditions. American Journal Medical Genetics 143A(7):707-717. 2007. [PubMed]
Leppert M, Matsuda I, et al. Community Engagement, Public Consultation, and Informed Consent in the International HapMap Project. Community Genetics, 10(3):186-198. 2007. [PubMed]
Marshall P. Ethical Issues in Research Design and Informed Consent to Biomedical and Social Research in Resource Poor Settings. Geneva: World Health Organization, Special Topics in Social, Economic, and Behavioral Research Series of Programme for Research and Training in Tropical Diseases (TDR), 2007.
Davis DS. The changing face of misidentified paternity. Journal of Medicine and Philosophy, 32(4):359-373. 2007. [PubMed]
Juengst E. Annotating the Moral Map of Enhancement: Gene Doping, the Limits of
Medicine and the Spirit of Sport. Ethics, Genetics and the Future of Sport: Implications of Genetic Modification Selection. ed. T Murray. Washington, DC, Georgetown University Press. [In Press]
Juengst E, Grankvist H. Ethical Issues in Human Gene Transfer: A Historical Overview. In Principles of Health Care Ethics. ed. R Ashcroft. John Wiley and Sons. pp. 789-796. 2007.
Leppert M, Matsuda I, et al. Community Engagement, Public Consultation, and Informed Consent in the International HapMap Project. Community Genetics. [In Press]
Binstock RH, Fishman JR, et al. The Ethics, Sociology, and Politics of Anti-Aging Medicine and Science. Beyond Therapy. ed. T Runkel. Bonn, Germany, Institut für Wissenschaft und Ethik. [In Press]
Davis D. A Thoughtful Look at Disability. Hastings Center Report, 54-55(2). 2007.
Davis D. A Thoughtful Look at Disability. Hastings Center Report, 54-55(2). 2007.
Binstock RH and JR Fishman. Social Dimensions of Anti-Aging Science and Medicine, in Dale Dannefer and Chris Phillipson (eds.), International Handbook of Social Gerontology (Sage Publications, in press).
Davis D. Religion, Genetics, and Sexual Orientation: A First Cut, Kennedy Institute of Ethics Journal (in press).
Fishman JR, Binstock RH, Lambrix M. Anti-Aging Science: The Emergence, Maintenance, and Enhancement of a Discipline, Journal of Aging Studies. In Press.
Berg J. Of Elephant and Embryos: A Proposed Framework for Legal Personhood. Hastings Law Journal, In Press. 2008.
Juengst E, Goldenberg A. Genetic diagnostic, pedigree and screening research. The Oxford Textbook on the Ethics of Clinical Research. E. Emanuel, Grady, C., Reidar, L Miller, F. Wendler, D. Oxford University Press. In Press.
Settersten RA Jr, Flatt M, Ponsaran R. The Lure and the Lair of Anti-Aging Research: Top Scientists, a Contested Field, and the Struggle for Legitimacy. Journal of Aging Studies. In Press.
Workman ML, Winkelman C. (accepted for publication, anticipated out in August). The Genetics of Pulmonary Disease. Critical Care Nursing Clinics of North America.
JUENGST, Eric "Enhancement Ethics and the Molecular Genetics of Aging"
Juengst, E.T.; Binstock, R.H.; Mehlman, M.J., et al. "Aging- Antiaging research and the need for public dialogue." Science. 2003. 299(5611): 1323-1323. [PubMed]
Juengst, E.T., Binstock, R.H., Mehlman, M., et al. "Biogerontology, 'anti-aging medicine,' and the challenges of human enhancement." Hastings Center Report. 2003; 33(4):21-30 [PubMed]
Mehlman, M.J., Binstock, R.H., Juengst, E.T., et al. "Anti-aging medicine: Can consumers be better protected?" Gerentologist 2004. 44(3): 304-310. [PubMed]
Whitehouse, P.J, Juengst, E.T. "Antiaging medicine and mild cognitive impairment: Practice and policy issues for geriatrics." J. Am. Geriatr. Soc.. 2005; 53(8): 1417-1422. [PubMed]
Binstock, R., Fishman, J., Juengst, E.: Anti-aging medicine and science: Social implications. 6th Edition. Binstock, R., George, L.K. and Cutler, S. J. Handbook of Aging and the Social Sciences. Academic Press. 2006.
Binstock, R., Juengst, E., Fishman, J. "Boundaries and labels: Anti-aging medicine and science." Journal of Gerontology: Biological Sciences. [In Press]
JUENGST, Eric "Enhancement: Professional Ethical and Public Policy Issues"
Juengst E.T. "Growing pains: Bioethical perspectives on growth hormone replacement research" J Anti-Aging Med, 5(1): 73-79 Spring 2002
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KAHN, Jeffrey "Genetics & Disability Insurance Ethics, Law & Policy"
Kahn JP, Wolf SM (eds). Genetic Testing and Disability Insurance. JLME, Special Supplement 35:2; 90p. Summer 2007.
KAHN, Jonathan "Colliding Categories: Haplotypes, Race & Ethnicity"
Kahn J. Genes, Race, and Population: Avoiding a Collision of Categories. American Journal of Public Health, 96(11):1965-70. 2006 [PubMed]
KARJALA, Dennis "A Legal Research Agenda for the Human Genome Initiative"
Karjala, D.S. "A Legal Research Agenda for the Human Genome Initiative." Jurimetrics. 1992: (Special Issue: The Human Genome Initiative) 32(2); 121-311.
KAY, Lily "Information and the Transformation of Molecular Biology"
Kay, L.E. Who Wrote the Book of Life? A History of the Genetic Code. Stanford University Press, February 2000.
KELEHER, Cynthia "Human Genome Project Education and Outreach"
Keleher, C.A. "Translating the Genetic Library: The Goals, Methods, and Applications of the Human Genome Project." Bulletin of the Medical Library Association. 1993: 81: 274-277.
KELLY, Susan "Routes of Access to Genetic Services For Rural KY Women"
Kelly SE. "The new genetics meets the old underclass: Findings from a study of genetic outreach services in rural Kentucky." Critical Public Health. 2002: 12(2); 1-18.
Kelly S.E. "The 'new genetics' meets the old underclass: Findings from a study of genetic outreach services in rural Kentucky." Critical Public Health (accepted for special issue, Winter 2002)
Kelly S.E. "Bioethics and rural health: Theorizing Place, Space, and Subjects." Social Science & Medicine (accepted for special issue 2003).
Kelly SE. "Bioethics and rural health: theorizing place, space, and subjects." Social Science & Medicine. June 2003; 56 (11): 2277-2288.
Kelly SE. "A different light - Examining, impairment through parent narratives of childhood disability." Journal of Contemporary Ethnography. APR 2005; 34 (2): 180-205
KEVLES, Daniel "Seminar on Ethical and Policy Issues Arising from the Project to Map and Sequence the Human Genome"
Kevles, D.J. and L. Hood, eds. The Code of Codes: Scientific and Social Issues in the Human Genome Project. Cambridge: Harvard University Press, 1992. 397p.
Kevles, D.J. "Social and Ethical Issues in the Human Genome Project." Phi Kappa Phi Journal (National Forum). Spring 1993; 73: 18-21.
KILBERG, Richard "Our Genes/Our Choices"
Gesteland R.F. "Exploring genetic technology." video review. Judicature. May-June 2003; 86(6): 320-321.
KING, Mary Claire "Sequencing mtDNA for Human Identification"
King, M.C. "An Application of DNA Sequencing to a Human Rights Problem." In: Molecular Genetic Medicine, Friedman, Ed. 1991: 117-131.
Ginther, C.; L. Issel-Tarver; and M.C. King. "Identifying Individuals by Sequencing Mitochondrial DNA from Teeth." Nature Genetics. October 1992; 2: 135-138.
KINNEY, Anita "BRCA1 Testing in a Large African American Kindred"
Kinney, A.Y., Croyle, R.A., Dudley, W.N., Neuhausen, S., Pelias, M.K., & Bailey, C. "Knowledge and attitudes toward genetic testing among a large African American kindred with a BRCA1 mutation." Preventive Medicine. 2001; 33: 543-551.
BRCA Team. (2001). Family health study. Salt Lake City, UT: Color Transfer. (Culturally targeted BRCA1 testing educational pamphlet).
Baty, B.J., Kinney, A.Y., Dudley, W., Marshall, E. "Uncertainty in a family at high risk for a BRCA1 mutation." Journal of Genetic Counseling. 2002; 11: 470-471.
Kinney, A.Y., Emery, G., Dudley, W.N., & Croyle, R.T. "Screening behaviors among African American women at high risk for breast cancer: Do beliefs about God matter?" Oncology Nursing Forum. 2002; 29: 835-843.
Baty, B.J., Kinney, A.Y., Simonsen, S., & Wiley, A. "Developing culturally sensitive cancer genetics communication aids for African-Americans." American Journal of Medical Genetics. 2003; 118: 146-155.
Baty BJ, Dudley WN, Musters A, Kinney AY. Uncertainty in BRCA1 cancer susceptibility testing. Am J Med Genet Part C Semin Med Genet, 142(4):241-50. 2006. [PubMed]
KLITZMAN, Robert "Views and Approaches Toward Research Integrity Among IRBs"
Klitzman, R. Complications of culture in obtaining informed consent. American Journal of Bioethics
6(1):20-21. 2006. [PubMed]
Klitzman, R. Qualifying confidentiality: Historical and empirical issues and facts. American Journal of
Bioethics, 6(2):26-27. 2006. [PubMed]
Krosin, M, Klitzman, R, Levin, B, Cheng, J, Ranney, ML. Problems in comprehension of informed
consent in rural and peri-urban Mali, West Africa. Clinical Trials, 3(3):306-313. 2006. [PubMed]
Klitzman, R. Questions, complexities, and limitations in disclosing individual genetic test results.
American Journal of Bioethics, 6(6):34-36. 2006. [PubMed]
Klitzman, R. Additional implications of a national survey on ethics consultation in U.S. hospitals.
American Journal of Bioethics. 7(2):47-48. 2007. [PubMed]
Klitzman, R, Siragusa, J, Albala, I, Appelbaum, P. The reporting of monetary compensation in research articles.
Journal of Empirical Research on Human Research Ethics, 2(4):61-67. 2007. [PubMed]
Klitzman, R, Zolovska, B, Folberth, W, Chung, W, Sauer, M, Appelbaum, P. Pre-implantation Genetic Diagnosis: Ethics, Risks and Benefits. Fertility and Sterility, 92(4):1276-1283. 2008.
Klitzman, R, Appelbaum, P, and Chung, W. Anticipating issues related to increasing Pre-implantation
genetic diagnosis use: A research agenda. Reproductive Biomedicine, 17(1):33-42. 2008. [PubMed]
Klitzman, R, Albala, I, Siragusa, J, Appelbaum, P. The reporting of compensation and risks on
research recruitment websites. IRB, 30(1):15-20. 2008.
Klitzman, R. Views of the process and content of ethical reviews of HIV vaccine trials among members
of US Institutional Review Boards and South African Research Ethics Committees. Developing
World Bioethics, 8(3):207-218. 2008. [PubMed]
Klitzman, R and Sauer, M. Should egg donors in stem cell research be paid, and if so, how much?
Reproductive BioMedicine Online, 18(5):603-608.
Appelbaum, P, Lidz, C, and Klitzman, R. Voluntariness of Consent to Research: A Conceptual Model.
Hastings Center Report 39(1):30-39. 2009.
Appelbaum, P, Lidz, C, Klitzman, R. Voluntariness of Consent to Research: A Preliminary Empirical
Investigation. IRB, 31(6):10-14. 2009.
Kleinert, K, Rifai, H, and Klitzman, R. Reporting of IRB approval in journal articles that present
research conducted in the developing world. Developing World Bioethics, doi: 10.1111/j. 1471-8847. 2011 [PubMed]
Klitzman, R. Genetic Discrimination Post-GINA: Subtle and Indirect Discrimination. Journal of
Genetic Counseling. [In Press]
Fisher, C. F., Chin, L., Klitzman, R. The Marketing of Neuromarketing: Ethical and Policy Considerations. Harvard Review of Psychiatry. [In press]
KLITZMAN, Robert "Views of Privacy of Genetic Information"
Klitzman R, Kirshenbaum S, Kittel L, et al. Intricacies and Inter-relationships Between HIV Disclosure and HAART: A Qualitative Study. AIDS Care, 16(5):628-640, 2004. [PubMed]
Klitzman R, Kirshenbaum SB, Kittel L, Morin SF, Daya S, Mastrogiacomo M, Rotheram-Borus, MJ. Naming Names: Perceptions of Name-Based HIV Reporting, Partner Notification, and Criminalization of Non-disclosure Among Persons Living With HIV. Sexuality Research and Social Policy, 1(3):38-57. 2004. [NLM Gateway]
Klitzman R, Bayer R. Mortal Secrets: Truth and Lies in the Age of AIDS. Johns Hopkins University Press. Paperback edition. 2005.
Klitzman R. Clinical Neuroethics. In Neuroethics. Oxford University Press. J. Illes (editor). [In Press]
KNOPPERS, Bartha "The First International Conference on DNA Sampling & Human Genetic Research: Ethical, Legal and Policy Aspects"
Knoppers, B.M., C.M. Laberge and M. Hirtle, eds. Human DNA: Law and Policy. The Hague, The Netherlands: Kluwer Law International, 1997.
KOENIG, Barbara "A Case-Based Ethics Curriculum for the Biotech Industry"
Kuppermann, M., E. Gates, A.E. Washington. "Racial/Ethnic Differences in Prenatal Diagnostic Test Use and Outcomes: Preferences, Socioeconomics or Patient Knowledge?" Obstetrics and Gynecology. 1996; 87: 675-82.
Kuppermann, M., D. Feeny, E. Gates, S. Posner, B. Blumberg, A.E. Washington. "Preferences of Women Facing a Prenatal Diagnostic Choice: Implications for Genetic Testing Guidelines." Medical Decision Making. 1996; 16: 466. (Abstract)
KUPPERMANN, Miriam "Optimizing Prenatal Testing Decision-Making"
Kuppermann, M., E. Gates, A.E. Washington. "Racial/Ethnic Differences in Prenatal Diagnostic Test Use and Outcomes: Preferences, Socioeconomics or Patient Knowledge?" Obstetrics and Gynecology. 1996; 87: 675-82.
Kuppermann, M., D. Feeny, E. Gates, S. Posner, B. Blumberg, A.E. Washington. "Preferences of Women Facing a Prenatal Diagnostic Choice: Implications for Genetic Testing Guidelines." Medical Decision Making. 1996; 16: 466. (Abstract)
Knoppers, B.M., C.M. Laberge and M. Hirtle, eds. Human DNA: Law and Policy. The Hague, The Netherlands: Kluwer Law International, 1997.
Kuppermann, M., S. Shiboski, D. Feeny, E. Elkin, A.E. Washington. "Can Preference Scores for Discrete States be Used to Derive Preference Scores for an Entire Path of Events? An Application to Prenatal Diagnosis." Medical Decision Making. 1997; 17: 42-55.
Kuppermann M., Feeny D., Gates E., Posner S., Blumberg B., Washington A.E. "Preferences of women facing a prenatal diagnostic choice: Long-term outcomes matter most." Prenatal Diagnosis. 1999; 19: 711-6.
Moyer A., Brown B.A., Gates E., Daniels M., Brown H.D., Kuppermann M. "Decision about prenatal testing for chromosomal disorders: Perceptions of a diverse group of pregnant women." Journal of Women's Health & Gender-Based Medicine. 1999; 8: 521-31.
Ratliff A., Angell M., Dow R.W., Kuppermann M. et al. "What is a good decision?" Effective Clinical Practice. 1999; 2: 185-97.
Kupperman M., Goldberg J.D., Nease R.F., Washington A.E. "Who should be offered prenatal diagnosis? The thirty-five-year-old question." American Journal of Public Health. 1999;89:160-3.
Ostrove J.M., Adler N.E., Kuppermann M., Washington A.E. "Objective and subjective assessments of socioeconomic status and their relationship to self-rated health in an ethnically diverse sample of pregnant women." Health Psychology, 2000; 19:613-8.
Kuppermann M., Nease R.F., Learman L.A., Gates E., Blumberg B., Washington A.E.. "Procedure-related miscarriages and Down syndrome-affected births: Implications for prenatal testing based on women's preferences." Obstetrics and Gynecology, 2000; 96: 511-6.
Kuppermann M., Nease R.F., Ackerson L.M., Black S.B., Shinefield H.R., Lieu T.A.. "Parents preferences for outcomes associated with childhood vaccinations." Pediatric Infectious Disease Journal. 2000; 12: 129-33.
Harris R.A., Washington AE, Feeny D, Kuppermann M. "Decision Analysis of Prenatal Testing for Chromosomal Disorders: What Do the Preferences of Pregnant Women Tell Us?" Genetic Testing. 2001; 5(1): 23-32.
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LAPHAM, E. Virginia "Human Genome Education Model Program"
The HuGEM Project. Georgetown University Child Development Center, Washington, DC and The Alliance of Genetic Support Groups, Chevy Chase, MD. (Six videos: titles listed below)
- "The HuGEM Project: Overview of the Human Genome Project and Its Ethical, Legal and Social Issues." (19 minutes)
- "The HuGEM Project: Genetic Testing Across the Lifespan" (30 minutes)
- "The HuGEM Project: Issues of Genetic Privacy and Discrimination" (45 minutes)
- "The HuGEM Project: Opportunities and Challenges of the Human Genome Project" (24 minutes)
- "The HuGEM Project: Working Together to Improve Genetic Services" (28 minutes)
Palincsar, L. et al. Human Genome Education Model Project Video Manual. Georgetown University Child Development Center, Washington, DC and The Alliance of Genetic Support Groups, Chevy Chase, MD. Georgetown University. 1996.
Lapham, E.V. and J.O. Weiss. "Ethical, Legal, and Social Implications of the Human Genome Project: Education of Interdisciplinary Professionals Meeting Proceedings." Human Genome Education Model Project. Georgetown University. Washington, DC. June 10, 1996.
Lapham, E.V., C. Kozma and J.O. Weiss. "Genetic Discrimination: Perspectives of Consumers." Science, 25 October 1996; 274: 621-624.
Lapham, E.V., T. Long and C. Kozma. "New Genetics: The Human Genome Project." PT Magazine. March 1999: 78-83.
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Smith, D.H., K.A. Quaid, R.B. Dworkin et al. Early Warning: Cases and Ethical Guidance for Presymptomatic Testing in Genetic Diseases. Bloomington, Indiana: Indiana University Press, 1998. 188 p.
SMITH, Edward "Tuskegee Genome Conference"
Smith, E.J. and W.J. Sapp eds. Plain Talk about the Human Genome Project. Tuskegee, Alabama: Tuskegee University. 1997.
SORENSON, James "An Evaluation of Testing and Counseling for CF Carriers"
Genetic Counseling for CF Carriers. Parts I & II. (An educational videotape to be used in conjunction with genetic counseling on cystic fibrosis testing.) Chapel Hill: University of North Carolina, 1992.
Sorenson, J.R. and B. Cheuvront. "The Human Genome Project and Health Behavior and Health Education Research." Health Education Research. 1993; 8(4): 589-593.
Callanan, N.P. et al. "CF Carrier Testing: Experience of Relatives." Journal of Genetic Counseling. 1995; 4(2): 83-95.
Sorenson, J.R. et al. "Proband and Parent Assistance in Identifying Relatives for Cystic Fibrosis Carrier Testing." American Journal of Medical Genetics. 1996; 63(3): 419-425.
Sorenson, J.R. et al. "Acceptance of Home and Genetic Clinic Cystic Fibrosis Carrier Education and Testing by First, Second, and Third Degree Relatives of CF Patients." American Journal of Medical Genetics May 1997; 70(2): 121-129.
Cheuvront B., Sorenson J.R., Callanan N.P. et al. "Psychosocial and educational outcomes associated with home- and clinic-based pretest education and cystic fibrosis carrier testing among a population of at-risk relatives." American Journal of Medical Genetics February 1998; 75(5): 461-468.
Callanan N.P., Cheuvront B.J., Sorenson J.R. "CF Carrier testing in a high risk population: Anxiety, risk perceptions, and reproductive plans of carrier by "non-carrier" couples." Genetics in Medicine. November/December 1999; 1(7): 323-7.
Newman JE, Sorenson JR, DeVellis BM, Cheuvront B. "Gender differences in psychosocial reactions to cystic fibrosis carrier testing." American Journal of Medical Genetics. NOV 22 2002; 113 (2): 151-157.
SORENSON, James "An Experimental Study to Improve Risk/Benefit Appraisal"
Sorenson JR, Lakon C, Spinney T, Jennings-Grant T. "Assessment of a decision aid to assist genetic testing research participants in the informed consent process." Genetic Testing. FAL 2004; 8 (3): 336-346
Griffith JM, Sorenson JR, Jennings-Grant T, Fowler B. "Development of an interactive computer-assisted instruction (ICAI) program for patient prenatal genetic screening and carrier testing for use in clinical settings." Patient Education and Counseling. (In pressavailable online December 2004)
SORENSON, James "Hemophilia 'A' Carrier Testing--Acceptance and Reactions"
Sorenson JR, Jennings-Grant T, Newman J. "Communication about carrier testing within hemophilia A families." American Journal of Medical Genetics Part C-Seminars in Medical Genetics. MAY 15 2003; 119C (1): 3-1
SPICER, Paul "The Promises and Pitfalls of Native Genetic Research"
Buchwald, D., Mendoza-Jenkins, V., Croy, C., McGough, H., Bezdek, M., Spicer, P. ?Attitudes of urban American Indians and Alaska Natives regarding participation in research.? J Gen Intern Med. 2006; 21(6): 648-51. [PubMed]
STOWE, Matthew "A Framework for Disability Perspectives on HGP"
Stowe, MJ, Turnbull, HR, Pence, R, Rack, J, Schrandt, S, Laub, L. The Importance of Attitudes Toward and Understanding of Disability and Science in the Age of Genetics. Research and Practice for Persons with Severe Disabilities, 32(3):190-206. 2007.
Stowe, M, Turnbull, R, Schrandt, M, and Rack, J. Looking to the Future: Intellectual and Developmental Disabilities in the Genetics Era. Journal on Developmental Disabilities, 13(2): 1-64. 2007.
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TEICH, Albert "Ethical and Legal Implications of Genetic Testing"
Conference Proceedings: The Genome, Ethics, and the Law: Issues in Genetic Testing. Washington, DC: AAAS (publication Number 92-11S), 1992. 124p.
Frankel M. and A. Teich. Ethical and Legal Issues in Pedigree Research. Washington, DC: AAAS, 1993. 216p.
Frankel, M. and A. Teich, eds. The Genetic Frontier: Ethics, Law and Policy. Washington, DC: AAAS, 1994. 240p.
TERCYAK, Kenneth "Parent Communication of BRCA1/2 Test Results to Children"
Tercyak KP, Peshkin BN, Demarco TA et al. Information Needs of Mothers Regarding Communicating BRCA1/2 Cancer Genetic Test Results to Their Children. GENETIC TESTING, 11(3): 249-255. 2007. [PubMed]
Peshkin BN, DeMarco TA, Garber JE et al. Brief Assessment of Parents? Attitudes Toward Testing Minor Children for Hereditary Breast/Ovarian Cancer Genes: Development and Validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS). Journal of Pediatric Psychology, pp. 1-12. 2008. [PubMed]
DeMarco, TA, Peshkin, BN, Valdimarsdottir, HB, Patenaude, AF, Schneider, KA, Tercyak, KP. Role of Parenting Relationship Quality in Communicating about Maternal BRCA1/2 Genetic Test Results with Children. Journal of Genetic Counseling, 17:283287. 2008. [PubMed Central]
O'Neill, SC, Peshkin, BN, Luta, G, Abraham, A, Walker, LR, Tercyak, KP. Primary care providers' willingness to recommend BRCA1/2 testing to adolescents. Familial Cancer, 9(1):43-50. 2010. [PubMed]
Tercyak, KP, Alford, SH, Emmons, KM, Lipkus, IM, Wilfond, BS, McBride, CM. Parents' Attitudes Toward Pediatric Genetic Testing for Common Disease Risk. Pediatrics, 127(5):288-295. 2011. [PubMed]
TEXTER, Cardie "The Human Genome Project: Human and Scientific Dimensions"
MCET. The Human Genome Project: Exploring the Human and Scientific Dimensions. (Series of 7 Videos--core of bi-weekly elective biology course). Boston: MCET.
Blatt, R. "The Human Genome Project: Exploring the Scientific and Humanistic Dimensions." (Curriculum Materials). Boston: MCET.
Additional MCET Video Products:
- "Fragile Pressure" Fragile X. December 1993. (Video length: 18:26)
- Human Genome Project Cystic Fibrosis Case Study: In Whose Hands?. (Video length: 18:32)
- Human Genome Teachers Institute Studio. (Video)
- "Shadows on the Screen": Human Genome Project. (Video length: 17:30)
- "A Test of Time" Huntington's Disease. December 1993. (Video length: 16:33)
TROTTIER, Ralph "Impact of HGP Derived Technology on Genetic Testing, Screening and Counseling: Cultural, Ethical, and Legal Issues"
Crandall, L.A. "Biomedical Ethics: Challenges from New Technologies" in Building Bridges: Strategies for the Future, Proceedings of the 14th Annual Meeting of the Society for Healthcare Planning and Marketing. Chicago; American Hospital Association, 1992.
Crandall, L.A. "Health Care Reform and Payment for 'Non-Beneficial' Medical Interventions at the End of Life: Is There a Policy Solution?" pp. 123-34 in Health Care Crisis? The Search for Answers. Frederick, Maryland;University Publishing Group, 1995.
James, D.C.S. et al., "Professional Preparation of Individuals Who Provide Genetic Counseling Services," J. Genet. Couns. 1995; 4: 49-63.
James, D.C.S. et al., "Roles of Physicians, Genetic Counselors, and Nurses in the Genetic Counseling Process," J. Fla. Med. Assoc. 1995; 82(5): 403-10.
Phoenix, D.A., et al., "Sickle Cell Screening Policies as Portent: How the Human Genome Project Affects Public-Sector Genetic Services?" J. Nat Med. Assoc. November 1995; 87: 807-12.
Trottier, R.W. "Genetics In Public Health: Implications of Genetic Screening/Counseling in Rural/Culturally Diverse Populations," Chapter 13 in Technoscience and Cyberculture, S. Aronowitz, B. Martinsons, and M. Menser, Eds.. New York: Routledge Press, 1996.
Crandall, L.A. "Genetic Testing and Managed Care: Balancing Individual, Family, and Corporate Interests" in Resources, Rationing, and Responsibility: Ethical Issues in Managed Care (Continuing Education Conference Papers). Indianapolis; Indiana University School of Medicine, Division of Continuing Education, 1996.
Trottier, R.W. and L.A. Crandall. Public Sector Genetic Services: Current Status and Potential Issues Raised by the Human Genome Project. Final Report, Morehouse School of Medicine; Atlanta: October 1996.
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WACHBROIT, Robert "Reassessing Health, Normality, and Confidentiality"
Wasserman, D. "Disability, Discrimination, and Fairness." Report from the Institute for Philosophy & Public Policy. 1993; 13: 7-12.
Wachbroit, R. "Rethinking Medical Confidentiality: The Impact of Genetics." Suffolk University Law Review. Winter 1993; 27(4): 1391-1410.
Wulfsberg, E.A. et al. "Alpha-Antitrypsic Deficiency: Impact of Genetic Discovery on Medicine and Society." JAMA. 1994; 271(3): 217-222.
Hoffmann, D.E. and E.A. Wulfsberg. "Testing Children for Genetic Predispositions: Is it in Their Best Interest?" The Journal of Law, Medicine & Ethics. Winter 1995; 23(4): 331-344.
WAISBREN, Susan "Expanded Newborn Screening for Metabolic Disorders"
Albers S., Levy H.L. "One more thought on sudden infant death syndrome." Pediatrics 2001; 107: 809 (letter).
Albers S., Marsden D., Quackenbush E., Stark A.R., Levy H.L., Irons M. "Detection of neonatal CPT II deficiency by expanded newborn screening." Pediatrics 2001; 107: e103, 1-4.
Albers S., Levy H.L., Irons M. et al. "Compound heterozygosity in four asymptomatic siblings with medium-chaim acyl-CoA dehydrogenase deficiency." J Inherit Metab Dis 2001; 24: 417-8.
Waisbren S.E., Albers S., Amato S. et al. "Effect of Expanded Newborn Screening for Biochemical Genetic Disorders on Child Outcomes and Parental Stress." JAMA. November 19, 2003; 290(19); 2564-2572. (Holtzman N.A. "Expanding Newborn Screening: How Good Is the Evidence?" Editorial, 2606-2608).
Website: New England Consortium of Metabolic Programs
Highlighted presentations available on the website include: "Newborn Screening: A New Era," by Harvey L. Levy;
"Benchmarks for Fairness in Newborn Screening for Metabolic Disorders," by Susan Waisbren; and "Genetics and Newborn Screening Collaborative," by Thomas Brewster.
Waisbren, S.E., Levy, H.L. "Expanded screening of newborns for genetic disorders." JAMA. 2004; 18;291(7): 820-1; author reply 821. [PubMed]
Waisbren, S.E., Rones, M., Read, C.Y., Marsden, D., Levy, H.L. "Brief report: Predictors of parenting stress among parents of children with biochemical genetic disorders." J. Pediatr Psychol. 2004; 29(7):565-70. [PubMed]
Gurian, E.A., Kinnamon, D.D., Henry, J.J., Waisbren, S.E. "Expanded newborn screening for biochemical disorders: The effect of a false-positive result." Pediatrics. 2006; 117(6): 1915-21. [PubMed]
WALTERS, LeRoy "DNA Patent Policies at Academic Institutions"
Pressman, L., Burgess, R., Cook-Deegan, R.M., McCormack, S.J., Nami-Wolk, I., Soucy, M., Walters, L. "The licensing of DNA patents by US academic institutions: an empirical survey." Nature Biotechnology. 2006; 24(1): 31-39. [PubMed]
WALTERS, LeRoy "National Information Resource on Ethics and Human Genetics"
WALTERS, LeRoy. National Information Resource on Ethics & Human Genetics Web site. Includes: Genetics and Ethics database, QuickBibs, Digital Collection Project, Organizations, Search Request Form.
United States. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Splicing Life: a Report on the Social and Ethical Issues of Genetic Engineering with Human Beings. Washington, DC: President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1982. 126p. Full text digitized and provided at: http://bioethics.georgetown.edu/pcemr/splicinglife.pdf, also available at: http://www.bioethics.gov/reports/past_commissions/splicinglife.pdf
United States. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Screening and Counseling for Genetic Conditions: a Report on the Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Programs. Washington, DC: U.S. Government Printing Office, 1983. 122p. Full text digitized and provided at: http://bioethics.georgetown.edu/pcemr/geneticscreening.pdf, also available at: http://www.bioethics.gov/reports/past_commissions/geneticscreening.pdf
Durfy, S.J. and A.E. Grotevant. "The Human Genome Project." Scope Note 17. Kennedy Institute of Ethics Journal. December, 1991; 1(4): 347-362.
McCarrick, P.M. "Genetic Testing and Genetic Screening." Scope Note 22. Kennedy Institute of Ethics Journal. September 1993; 3(3): 333-354.
Coutts, M.C. "Human Gene Therapy." Scope Note 24. Kennedy Institute of Ethics Journal. March 1994; 4(1): 68-83.
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 21." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1995. 783p.
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 22." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1995. 761p.
Coutts, M.C. and P.M. McCarrick. "Eugenics." Scope Note 28. Kennedy Institute of Ethics Journal. June 1995; 5(2): 163-178.
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 23." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1997. 774p.
Darragh, M. and P.M. McCarrick. "Genetics and Ethics: Selections from Updated Scope Notes." Kennedy Institute of Ethics Journal. September 1997; 7(3): 299-318.
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 24." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1998. 766p.
Bioethics Information Retrieval Project. "Bioethics Thesaurus." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1994-1999, annual.
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 25." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1999. 752p.
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 26." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 2000. 740p.
Bishop, L.J., M. Darragh, D. Goldstein, L. Huttlinger, A. Nolen. "Basic Resources in Bioethics: 1996-1999." Scope Note 37. Kennedy Institute of Ethics Journal. 2000 March; 10(1): 81-102.
Poland, S.C. "Genes, Patents, and Bioethics - Will History Repeat Itself?" Scope Note 39. Kennedy Institute of Ethics Journal. September 2000; 10(3): 265-281.
Walters, L. and T.J. Kahn eds. "Bibliography of Bioethics, Volume 27." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 2001. 675p.
Walters, L., T.J. Kahn, and D. Goldstein, eds. "Bibliography of Bioethics, Volume 28." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 2002. 765p.
Bishop, L.J. and S.C. Poland. "Bioethics and Cloning, Part I." Scope Note 41. Kennedy Institute of Ethics Journal. 2002 September; 12(3): 305-324.
Poland, S.C. and L.J. Bishop. "Bioethics and Cloning, Part II." Scope Note 42. Kennedy Institute of Ethics Journal. 2002 December; 12(4): 391-407.
Walters, L., T.J. Kahn, and D. Goldstein, eds. "Bibliography of Bioethics, Volume 29." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 2003. 737p.
Huttlinger, L.F., ed. "New Titles in Bioethics, 1994 to present." Quarterly and annual. From July 2003.
Bishop, L.J., and A.L. Nolen. "Animals in Science and Education." Co-published simultaneously in The Reference Librarian No. 86, 2004, p. 57-70; and: Kistler, John M., ed. "Animals Are the Issue: Library Resources on Animal Issues." Binghamton, NY: The Haworth Press, 2004; pp. 57-70.
Walters, L., T.J. Kahn, and D. Goldstein, eds. "Bibliography of Bioethics, Volume 30." Washington, DC: Kennedy Institute of Ethics, Georgetown University, 2004. 571p.
"Bioethics Searchers Guides: Using Databases of the National Library of Medicine and National Reference Center for Bioethics Literature." Washington, DC: Kennedy Institute of Ethics, Georgetown University, May 2004. 171 p.
WASSERMAN, David "Genetic Factors in Crime--Findings, Uses & Implications"
Wasserman, D. "Research into Genetics and Crime: Consensus and Controversy." Politics and the Life Sciences. March 1996: 15(1); 107-109.
WASSERMAN, David "Genetic Testing, Disabilities, and the Quality of Life"
Wasserman, D., Strudler, A. "Can a Nonconsequentialist Count Lives." Philosophy & Public Affairs. 2003; 31(1):71-94.
Wasserman, D., Bickenbach, J., Wachbroit, R., eds., Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability.. New York, New York: Cambridge University Press, 2005. 273 p.
WERTZ, Dorothy "Ethics and Genetics: A Survey of Approaches in the US and Canada"
Wertz, D.C. "Ethical and Legal Implications of the New Genetics: Issues for Discussion." Social Science and Medicine. 1992; 35(4): 495-505.
Wertz, D.C. and J.C. Fletcher. "A Critique of Some Feminist Challenges to Prenatal Diagnosis." Journal of Women's Health. 1993; 2(2): 173-188.
Wertz, D.C. "Provider Biases and Choices: The Role of Gender." Clinical Obstetrics and Gynecology. September 1993; 36(3): 521-531.
Wertz, D.C. and J.C. Fletcher. "Feminist Criticism of Prenatal Diagnosis: A Response." Clinical Obstetrics and Gynecology. September 1993; 36(3): 541-567.
Wertz, D.C. "Provider Gender and Moral Reasoning: The Politics of an Ethics of Care." Journal of Genetic Counseling. 1994; 3(2): 95-112.
Wertz, D.C. et al. "Testing Healthy Children and Adolescents; Recommendations for Avoiding Harm." The Genetic Resource. 1994; 8(2): 16-20.
Wertz, D.C. et al. "Genetic Testing for Children and Adolescents: Who Decides?" JAMA. September 1994; 272(11): 875-881.
Wertz, D.C. "Professional Perspectives: A Survey of Canadian Providers." Health Law Journal. 1995; 3: 59-130.
Wertz, D.C. "Ethics." In: Pediatric Neuropathology, S. Duckett, Ed. Baltimore: Williams & Wilkins, 1995.
Wertz, D.C. and P.R. Reilly. "Laboratory Policies and Practices for the Genetic Testing of Children: A Survey of the Helix Network." American Journal of Human Genetics. 1997; 61: 1163-1168.
Wertz, D.C. "The Difficulties of Recruiting Minorities to Studies of Ethics and Values in Genetics." Community Genetics. 1998; 1: 175-179.
Wertz, D.C. "Ethical Issues in Pediatric Genetics: Views of Geneticists, Parents, and Primary Care Physicians." Health Law Journal. 1998; 6: 1-42.
Wertz, D.C. "Genetic Discrimination: Results of a Survey of Genetics Professionals, Primary Care Physicians, Patients, and Public." Health Law Review. 1999; 7(3): 7-8.
Wertz, D.C. "Patient and Professional Views on Autonomy: A Survey in the United States and Canada." Health Law Review. 1999; 7(3): 9-10.
Wertz, D.C. "Drawing Lines: Notes for Policymakers." In: Parens, E., Asch, A., eds. Prenatal Testing and Disability. Washington, DC: Georgetown University Press. 2000: 261-287.
WERTZ, Dorothy "Geneticists Approach Ethics: An International Survey"
Wertz, D.C. "International Research in Bioethics: The Challenges of Cross-Cultural Interpretation." Bioethics and Society: Constructing the Ethical Enterprise. eds. R. DeVries and J. Subedi. New Jersey: Prentice Hall. 145-165.
Wertz, D.C. "Views of Chinese Medical Geneticists: How they Differ from 35 Other Nations." To appear in: Proceedings of the German Institute for Asian Studies
Wertz, D.C. and J.C. Fletcher. "Proposed: An International Code of Ethics for Medical Genetics." Clinical Genetics. 1993: 44(1); 37-43.
Wertz, D.C. "Opinions des geneticiens de 37 pays sur la preselection du sexe." Sociologie et societes. Autumn 1996; XXVIII(2): 77-92.
Wertz, D.C. "International Perspectives on Privacy and Access to Genetic Information." Microbial & Comparative Genomics. 1997; 2(1): 53-61.
Cohen, P.E., D.C. Wertz, I. Nippert and G. Wolff. "Genetic Counseling Practices in Germany: A Comparison Between East German and West German Geneticists." Journal of Genetic Counseling. 1997; 6(1): 61-80.
Wertz, D.C. "Society and the Not-so-New Genetics: What Are We Afraid of? Some Future Predictions From a Social Scientist." The Journal of Contemporary Health Law and Policy. 1997; 13: 299-346.
Mao, X. and D.C. Wertz. "China's Genetic Services Providers' Attitudes Towards Several Ethical Issues: A Cross-Cultural Survey." Clinical Genetics. 1997; 52: 100-109.
Wertz, D.C. "Is There a Women's 'Ethic' in Genetics: A 37-Nation Survey of Providers." JAMWA Winter 1997; 52(1): 33-38.
Wertz, D.C. and J.C. Fletcher. "Ethical and Social Issues in Prenatal Sex Selection: A Survey on Geneticists in 37 Nations." Soc Sci Med 1998; 46(2): 255-273.
Wertz, D.C. "Genetic Counseling in Mexico." American Journal of Medical Genetics. [Editorial Comment] 1998; 75: 424-425.
Lisker, R., A. Carnevale, J.A. Villa, S. Armendares and D.C. Wertz. "Mexican geneticists' opinions on disclosure issues." Clinical Genetics. 1998; 54: 321-329.
Wertz, D.C. "Eugenics Is Alive and Well: A Survey of Genetic Professionals around the World." Science in Context. 1998; 11(3-4): 100-109.
Wertz, D.C. "International Perspectives." In: The Genetic Testing of Children, A.J. Clark, Ed. Oxford: BIOS Scientific Publishers, 1998.
Wertz, D.C. "International Research in Bioethics: The Challenges of Cross-Cultural Interpretation." In: Bioethics and Society, eds. R. DeVries and J. Subedi. Upper Saddle River, New Jersey: Prentice Hall, 1998.
Wertz, D.C. "Patients' and Professionals' Views on Autonomy, Disability, and "Discrimination": Results of a 36-Nation Survey." In: The Commercialization of Genetic Research, eds. B. Williams-Jones and T. Caulfield. NewYork: Plenum Press, 1999.
Wertz, D.C. and J.C. Fletcher. "Geneticists Approach Ethics: An International Survey." Clinical Genetics. 1993: 43(2); 104-110.Georgetown University Press. 2000: 261-287.
Wertz D.C. "Emerging Risks of Genetic Testing." Risk Management Foundation of the Harvard Medical Institutions Forum. Summer; 2000: 8-9.
Wertz D., Fletcher J., Nippert I., Wolff G., Ayme S. "Has Patient Autonomy Gone too Far? Geneticists' Views in 36 Nations." The American Journal of Bioethics. 2002; 2(4) In Focus.
Wertz D.C. "Testing Children and Adolescents." in A Companion to Genethics. J. Burley and J. Harris. (eds.) Malden, Massachusetts: Blackwell Publishers, 2002. 92-113.
Wertz D.C., Knoppers B.M. "Serious Genetic Disorders: Can or Should They Be Defined?" American Journal of Medical Genetics. 108: 29-35 (2002)
WIKLER, Daniel "Human Genome Research in an Interdependent World"
Capron, A. "Human Genome Research in an Interdependent World." Kennedy Institute of Ethics Journal. September 1991. (Consensus Report including a proposal for Coordination of International ELSI issues by HUGO.)
WILKINSON, Susann "Biotechnology and the Diagnosis of Genetic Disease"
Biotechnology and the Diagnosis of Genetic Disease: Forum on the Technical, Regulatory and Societal Issues. Final Report. Washington, DC: Georgetown University Medical Center, August 1991. (Consensus Report on FDA's role in regulation of genetic technology.)
WOLF, Susan "Managing Incidental Findings in Human Subjects Research"
Wolf, SM, Paradise, J, Nelson, CA, Kahn, JP, Lawrenz, F. eds. Symposium: Incidental Findings in Human Subjects Research: From Imaging to Genomics. The Journal of Law, Medicine & Ethics 36(2):209-435. 2008.
Wolf, SM, Lawrenz, FP, Nelson, CA, et al. Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations. The Journal of Law, Medicine, and Ethics, 36(2):219-248. 2008. [PubMed]
Richardson, HS. Incidental Findings and Ancillary-Care Obligations. The Journal of Law, Medicine, and Ethics 36(2):256-270. 2008. [PubMed]
Wolf, SM. Introduction: The Challenge of Incidental Findings. The Journal of Law, Medicine, and Ethics, 36(2):216-218. 2008. [PubMed]
Van Ness, B. Genomic Research and Incidental Findings. The Journal of Law, Medicine, and Ethics, 36(2):292-297. 2008. [PubMed]
Siddiki, H, Fletcher, JG, McFarland, B. et al. Incidental Findings in CT Colonography: Literature Review and Survey of Current Research Practice. The Journal of Law, Medicine, and Ethics, 36(2):320-331. 2008. [PubMed]
Wilfond, BS, Capenter, KJ. Incidental Findings in Pediatric Research. The Journal of Law, Medicine, and Ethics, 36(2):332-340. 2008. [PubMed]
Parker, LS. The Future of Incidental Findings: Should They be Viewed as Benefits? The Journal of Law, Medicine, and Ethics, 36(2):341-351. 2008. [PubMed]
Milstein, AC. Research Malpractice and the Issue of Incidental Findings. The Journal of Law, Medicine, and Ethics, 36(2):356-360. 2008. [PubMed]
Wolf, SM, Paradise, J, Caga-anan C. The Law of Incidental Findings in Human Subjects Research: Establishing Researchers' Duties. The Journal of Law, Medicine, and Ethics 36(2):361-383. 2008. [PubMed]
Lawrenz, F, Sobotka, S. Empirical Analysis of Current Approaches to Incidental Findings. The Journal of Law, Medicine, and Ethics, 36(2):249-255. 2008. [PubMed Central]
Cho, MK. Understanding Incidental Findings in the Context of Genetics and Genomics. The Journal of Law, Medicine, and Ethics, 36(2):280-285. 2008. [PubMed Central]
Nelson, CA. Incidental Findings in Magnetic Resonance Imaging (MRI) Brain Research. The Journal of Law, Medicine, and Ethics 36(2):315-319. 2008. [PubMed Central]
Illes, J, Chin, VN. Bridging Philosophical and Practical Implications of Incidental Findings in Brain Research. The Journal of Law, Medicine, and Ethics 36(2):298-304. 2008. [PubMed Central]
Miller, FG, Mello, MM, Joffe S. Incidental Findings in Human Subjects Research: What Do Investigators Owe Research Participants? The Journal of Law, Medicine, and Ethics 36(2):271-279. 2008. [PubMed Central]
Orme, NM, Fletcher, JG, Siddiki, HA, et al. Incidental Findings in Imaging Research Evaluating Incidence, Benefit, and Burden. Archives of Internal Medicine, 170(17):1525-1532. 2010. [PubMed]
Fabsitz, RR, McGuire, A, Sharp Richard R, et. al. Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants: Updated Guidelines From a National Heart, Lung, and Blood Institute Working Group. Circulation-Cardiovascular Genetics, 3(6):574-580. 2010. [PubMed]
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ZABORSKY, Oskar "An Evaluation of the Application of DNA Technology in Forensic Science"
National Research Council. "DNA Technology in Forensic Science." Washington, D.C.: National Academy Press, 1992. 185p.
ZALLEN, Doris "The Human Genome Project: A Choices and Challenges Forum"
"The Human Genome Project: A Choices and Challenges Forum." Blacksburg, Virginia: Virginia Polytechnic Institute, April 1992. (Transcript and Videotape of Plenary session)
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Other ELSI Program Activities
"NIH-DOE ELSI Working Group Task Force on Genetics and Insurance (ITF)"
Project Date: May 1991 to May 1993
- NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research, Genetic Information and Health Insurance: Report of the Task Force on Genetic Information and Insurance. May 1993: NIH Publication No. 93-3686.
"Pre-symptomatic Testing for P53 Mutations"
Two conferences held May 8-9 and November 19, 1991 on the NIH Campus in Bethesda, Maryland. (Co-sponsored by NCI.)
- Li, F.P., J.E. Garber, S.H. Friend et al. "Recommendations on Predictive Testing for Germ Line p53 Mutations Among Cancer-Prone Individuals." Journal of the National Cancer Institute. August 5, 1992; 84(15): 1156-1160.
"NIH Cystic Fibrosis Studies Consortium (CFSC) and Consensus Development Conference"
Project Start Date: 9/30/91. Conference Date: April 14-16, 1997.
- Love, C.B. and E.J. Thomson. "Genetic Testing for Cystic Fibrosis: January 1989 through February 1997. [nlm.nih.gov] " Current Bibliographies in Medicine 97-2 . Bethesda, Maryland: National Library of Medicine, March 1997. 78p.
- Genetic Testing for Cystic Fibrosis [od.nih.gov]. NIH Consensus Statement 1997. April 14-16; 15(4): 1-37.
"Reproductive Genetic Testing: Impact on Women"
Conference held November 21-23, 1991, NIH campus, Bethesda, Maryland.
- Thomson, E., K. Rothenberg et al. "NIH Workshop Statement: Reproductive Genetic Testing: Impact on Women." American Journal of Human Genetics. November 1992; 51: 1161-1163.
- Evans, M., K. Rothenberg and E. Thomson, eds. "Reproductive Genetic Testing: Impact Upon Women." Fetal Diagnosis and Therapy. April 1993: 8(supplement).
- Rothenberg, K. and E. Thompson. Women and Prenatal Testing: Facing the Challenges of Genetic Technology. Columbus, Ohio: Ohio State University Press, 1994.
"Human Subjects in Genetics Research Involving Families: Points to Consider."
Conference held in 1992 on the NIH Campus in Bethesda, Maryland.
(Co-Sponsored by OPRR and NIMH)
- "Human Genetic Research." OPRR 1993 Protecting Human Research Subjects Institutional Review Board Guidebook. 1993: Chapter 5 (Section H); 42-63.
"NCHGR/CDC Informed Consent for Genetics Research Using Stored Tissue Samples"
Meeting held July 7 and 8, 1994 on the NIH campus in Bethesda, Maryland.
(Co-sponsored by CDC)
- Clayton, E.W., K.K. Steinberg, M.J. Khoury et al. "Informed Consent for Genetic Research on Stored Tissue Samples." JAMA. December 13, 1995; 274(22): 1786-1792.
"NIH Cancer Genetic Studies Consortium (CGSC)""
Project Start Date: 9/30/94
- Wilfond, B., K. Rothenberg, E. Thomson and C. Lerman "Ethical and Health Policy Issues in Cancer Genetic Testing." The Journal of Law, Medicine and Ethics. 1997; 25: 243-51.
- Burke, W., G. Petersen, P. Lynch et al. "Recommendations for Follow-up Care of Individuals With an Inherited Predisposition to Cancer: I. Hereditary NonPolyposis Colon Cancer." JAMA, March 19, 1997; 277(11): 915-919.
- Burke, W., G. Petersen, P. Lynch et al. "Recommendations for Follow-up Care of Individuals With an Inherited Predisposition to Cancer: II. BRCA1 and BRCA2." JAMA, March 26, 1997; 277(12): 997-1003.
- 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, May 14, 1997; 277(18): 1467-1474.
- Bowen, D.J., A. Farkas and S.W. Vernon. "Psychosocial Issues in Cancer Genetics: From the Laboratory to the Public." 326-328.
- Daly, M., J. Farmer, C. Harrop-Stein et al. "Exploring Family Relationships in Cancer Risk Counseling Using the Genogram." 393-398.
- Smith, K.R., J.A. West, R.T. Croyle and 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. 385-392.
- 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." 377-383.
- 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." 369-375.
- Codori, A.M., G.M. Petersen, D.L. Miglioretti et al. "Attitudes toward Cancer Gene Testing: Factors Predicting Test Uptake." 345-351.
- Petersen, G.M., E. Larkin, A.M. Codori et al. "Attitudes toward Colon Cancer Gene Testing: Survey of Relatives of Colon Cancer Patients." 337-344.
- 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." 329-336.
"Impact of Genetic Counseling and Testing for Breast Cancer"
Funded by the American Cancer Society grant # PBR-97 (Member of CGSC)
Project period: 1995-1998
The overall goals of these studies are to demonstrate the psychological effects of genetic counseling for women with a family history of breast cancer and the additional psychological impact of genetic testing as it is introduced into clinical counseling approaches.
- Offit, K. Clinical Cancer Genetics: Risk Counseling & Management. New York: Wiley-Liss, Inc., 1998. 419p.
"NIH-DOE ELSI Working Group Task Force on Genetic Testing"
Project Start Date: April 1995
- Cho, M.K., M. Arruda, and N.A. Holtzman. "Educational material about genetic tests: Does it provide key information for patients and practitioners?" American Journal of Medical Genetics. 1997; 73: 314-320.
- Holtzman N.A., P.D. Murphy, M.S. Watson and P.A. Barr. "Predictive genetic testing: From basic research to clinical practice." Science. 1997; 278: 602-605.
- NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research, Promoting Safe and Effective Genetic Testing in the United States: Final Report of the Task Force on Genetic Testing. eds. N.S. Holtzman and M.S. Watson. September 1997.
"NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and Health Insurance."
Meeting was held July 19, 1995 on the NIH Campus in Bethesda, Maryland
- Rothenberg, K.H. "Genetic Information and Health Insurance: State Legislative Approaches." Journal of Law, Medicine & Ethics. 1995; 23: 312-319.
- Hudson, K.L., K.H. Rothenberg, L.B. Andrews et al. "Genetic Discrimination and Health Insurance: An Urgent Need for Reform." Science. October 1995; 270: 391-393.
"Informed Consent in Research Involving Human Participants Request for Applications and Research Consortium"
September, 1996 (Trans-Agency Initiative)
-
IRB: Ethics & Human Research Supplement. September-October 2003; 25(5).
- Siminoff L.A. "Toward Improving the Informed Consent Process in Research with Humans." pp. s1-s3.
- Sachs G.A., Hougham G.W., Sugarman J. et al. "Conducting Empirical Research on Informed Consent: Challenges and Questions." pp. s4-s10.
- Agre P., Campbell F.A., Goldman B.D. et al. "Improving Informed Consent: The Medium Is Not the Message." pp. s11- s19.
- Broome M.E., Kodish E., Geller G., Siminoff L.A. et al. "Children in Research: New Perspectives for Informed Consent." pp. s20-s25.
- Hougham G.W., Sachs G.A., Danner D. et al. "Empirical Research on Informed Consent with the Cognitively Impaired." pp. s26-s32.
"NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and the Workplace: Implications for Employment, Insurance and Privacy"
Meeting was held October 4, 1996 in Bethesda, Maryland
- Rothenberg, K.H., B. Fuller, M. Rothstein et al. "Genetic Information and the Workplace: Legislative Approaches and Policy Challenges." Science. March 21, 1997; 275: 1755-1757.
"National Human Genome Research Institute and National Action Plan on Breast Cancer Workshop on Privacy and Confidentiality in Genetics Research"
Meeting was held September 16-17, 1997 in Bethesda, Maryland
- Fuller, B.P., M.J. Ellis Kahn, P.A. Barr et al. "Privacy in Genetics Research." Science. 27 August 1999; 285: 1359-1361.
"National Coalition for Health Professional Education in Genetics"
- Collins, F.S. "Preparing Health Professionals for the Genetic Revolution." JAMA. (Editorial) October 1997; 278(15): 1285-1286.
"Followup Workshop to the Consensus Development Conference on Genetic Testing for CF"
October 15-16, 1997.
- Mennuti, M.T., E. Thomson and N. Press. "Screening for Cystic Fibrosis Carrier State." Obstetrics & Gynecology. March 1999; 93(3): 456-461.
- Vernon, S.W., D.J. Bowen and A.F. Patenaude (eds.) "Psychosocial Aspects of Cancer Genetic Testing: Findings from the Cancer Genetics Studies Consortium." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4). [Pubmed]
- Grody W.W., Desnick R.J. [Editorial] "Cystic Fibrosis Population Carrier Screening: Here at Last Are We Ready?" Genetics in Medicine. March/April 2001; 3(2): 87-90.
- Grody W.W., Cutting G.R., Klinger K.W. et al. "Laboratory Standards and Guidelines for Population-based Cystic Fibrosis Carrier Screening." Genetics in Medicine. March/April 2001; 3(2): 149-154.
- Burke W., Emery J. "Science and society - Genetics education for primary-care providers." Nat Rev Genet. 3(7): 561-566 July 2002.
- Lerman, C., C. Hughes, J.L. Benkendorf et al. "Racial Differences in Testing Motivation and Psychological Distress following Pretest Education for BRCA1 Gene Testing." 361-367.
- Vernon, S.W., E.R. Gritz, S.K. Peterson et al. "Intention to Learn Results of Genetic Testing for Hereditary Colon Cancer." 353-360.
"Hereditary Hemochromatosis: Gene Discovery and Policy Meeting"
- Burke, W., E. Thomson, M.J. Khoury et al. "Hereditary Hemochromatosis: Gene Discovery and Its Implications for Population-Based Screening." JAMA. 1998; 280: 172-178.
"Bioethics Education Materials and Resources Subcommittee (BEMARS)"
- Love, C., E. Thomson and C. Royal. "Ethical Issues in Research Involving Human Participants." [nlm.nih.gov] Current Bibliographies in Medicine 99-3. Bethesda, Maryland: National Library of Medicine, May 1999: 4650 citations.
"Informed Consent in Human Subjects Research"
- Proceedings: Conference on Informed Consent in Human Subjects Research. Cookeville, Tennessee: Tennessee Technological University, Spring 2000.
"Genetic Medicine-Primary Care Faculty Development Program"
- Culver J.O., Hull J.L., Dunne D.F.B., et al. "Oncologists' opinions on genetic testing for breast and ovarian cancer." Genet Med. 3(2): 120-125 March-April 2001.
- Evans J.P., Skrzynia C., Burke W. "The complexities of predictive genetic testing." Brit Med J 322 (7293): 1052-1056 April 28, 2001.
- Pinsky L., Pagon R., Burke W. "Genetics through a primary care lens." Western J Med. 175(1): 47-50 July 2001.
- Bates B.R., Templeton A., Achter P.J., et al. "What does "a gene for heart disease" mean? A focus group study of public understandings of genetic risk factors." Am J Med Genet. A 119A(2): 156-161 June 1, 2003.
- Pinsky L.E., Culver J.B., Hull J., et al. "Why should primary care physicians know about breast cancer genetics?" Western J Med 175(3): 168-173 September 2001.
"Request for Proposals to Study Iron Overload and Hereditary Hemochromatosis"
- Mclaren C.E., Barton J.C., Adams P.C., et al. "Hemochromatosis and Iron Overload Screening (HEIRS) Study Design for an Evaluation of 100,000 Primary Care-Based Adults." The American Journal of The Medical Sciences. February 2003; 325(2): 53-62. [PubMed]
- Anderson R.T., Press N.A., Tucker D.C. et al. "Patient acceptability of genotypic testing for hemochromatosis in primary care."quot; Genetics IN Medicine. October 2005; 7(8): 557-563. [PubMed]
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Last Updated: September 8, 2011
