![](https://webarchive.library.unt.edu/web/20090130215201im_/http://www.genome.gov/Images/spacer2.gif) |
ELSI Publications and Products
Ethical, Legal and Social Implications (ELSI) Program 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 ![](https://webarchive.library.unt.edu/web/20090130215201im_/http://www.genome.gov/Images/downanchor.gif)
Publications for Grants and Contracts
ADEBAMOWO, Clement "West African Bioethics Training Program"
Lee SS-J. Invited Review: Personalized Medicine and Pharmacogenomics: Ethical and Social Challenges. Personalized Medicine, 2(1):29-35. 2005.
Winkelman C. (accepted for publication, anticipated out in August). Invited topic. Inflammation and Genomics in the Critical Care Unit. Critical Care Nursing Clinics of North America.
ANDERSON, Gwen "Genetics in Nursing Literature and Continuing Education"
Anderson, G. "State of the science: Social, psychological, ethical nursing research in genetics." Biological Research for Nursing. 1999; 1(2): 133-146. [PubMed]
Anderson, G., Ed. Nursing Ethics: An International Journal for Health Care Professionals. Hadder Arnold Journals. 7(3): pp. 187-279. 2000.
Anderson, G., C. Yetter Read, R. Monsen. "Genetics, nursing and public policy: Setting an international agenda." Policy, Politics and Nursing Practice. 2000; 1(4): 245-255.
ANDREWS, Lori "Conceptual Frameworks for Genetics Policy"
Andrews, L.B. "Genetic Fallout: New Technologies Are Changing the Legal Landscape." Trial. 1995; 31(12): 20-27. [PubMed]
Andrews, L.B. "Prenatal Screening and the Culture of Motherhood." Hastings Law Journal. 1996; 47(4): 967-1006. [PubMed]
Andrews, L.B. "Compromised Consent: Deficiencies in the Consent Process for Genetic Testing." Journal of the American Medical Women's Association. 1997; 52(1): 39-42, 44. [PubMed]
Andrews, L.B. "Gen-etiquette: Are There Moral and Legal Responsibilities to Share Genetic Information within Families?" Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. Mark Rothstein, Ed. New Haven: Yale University Press, 1997.
Andrews, L.B. "Body Science." American Bar Association Journal. 1997; 83: 44-49.
Andrews, L.B. "Predicting and Punishing Anti-Social Acts." Behavioral Genetics: The Clash of Culture and Biology. R.A. Carson, M. Rothstein, F.E. Bloom, eds. Baltimore, MD; Johns Hopkins University Press, 224p. May 1999.
Andrews, L.B. "Past as Prologue: Sobering Thoughts about Genetic Enthusiasm." Seton Hall Law Review. 1997; 27(3): 893-918. [PubMed]
"Legal Issues in the Regulation and Use of Genetic Testing." in Stanford Working Group on Breast Cancer Final Report. [Forthcoming]
ARAR, Nedal "Beliefs and Attitudes Towards Hereditary Prostate Cancer"
Plaetke R., Thompson I., Sarosdy M., Harris J.M., Troyer D., Arar, N.H. "Genetic fieldwork for hereditary prostate cancer studies." Urologic Oncology. 2002; 7(1): 19-27. [PubMed]
ARAR, Nedal "Cultural and Ethical Issues in Genetic Family Studies"
Arar N.H., Plaetke R., Arar M.Y. et al. "Incorporating the Contextual Assessment Approach to regimens used in genetic family studies." Genetics in Medicine. 2002; 4(6): 451-63. [PubMed]
Arar N.H., Hazuda H.P., Plaetke R. et al. "Familial Clustering of Diabetic Nephropathy: Perceptions and Risk Recognition Among Mexican-American Patients With a Family History of Diabetes." Diabetes Spectrum. 2003; 16(3): 136-142.
ARMSTRONG, Katrina "Distrust, Race/Ethnicity, and Predictive Genetic Testing"
Peters, N., Rose, A., Armstrong, K. "The Association between Race and Attitudes about Predictive Genetic Testing." Cancer Epidemiology Biomarkers & Prevention . 2004; 13(3): 361-5. [PubMed]
ARONOWITZ, Robert "History of Breast Cancer Risk, 1900-Present"
Aronowitz, RA. The dilemma of genetic testing: the "breast cancer gene" and the physician's role, as ethics case study. ACP Observer, 18(3):1. 1998.
Aronowitz RA. Do not delay: Great cancer and Time, 1900-1970. Milbank Quarterly, 79(3):355-386. 2001. [PubMed]
Aronowitz RA. An Unnatural History of Breast Cancer. Cambridge University Press. 2007.
ASCH, David "How Much Information about the Risk of Cystic Fibrosis Do Couples Want to Know?"
Asch, D. and J.C. Hershey. "Why Some Health Policies Don't Make Sense at the Bedside." Annals of Internal Medicine. 1995; 122(11): 846-50. [PubMed]
Asch, D. et al. "Genetic Screening for Reproductive Planning: Methodological and Conceptual Issues in Policy Analysis." American Journal of Public Health. 1996; 86(5): 684-90. [PubMed]
ASCH, David "Prescriptive Decision Modeling for Cystic Fibrosis Screening"
Asch, D. et al. "Clarification Needed to Cystic Fibrosis Model." American Journal of Obstetrics and Gynecology. 1993; 168; 1358-9. [PubMed]
Asch, D. et al. "Reporting the Results of Cystic Fibrosis Carrier Screening." American Journal of Obstetrics and Gynecology. 1993: 168(1, Part 1); 1-6. [PubMed]
Asch, D.A., J.C. Hershey, M.L. DeKay et al. "Carrier Screening for Cystic Fibrosis: Costs and Clinical Outcomes." Medical Decision Making. 1998; 18(2): 202-12. [PubMed]
BAILEY, Donald "ELSI Scale-Up: Large Sample Gene Discovery & Disclosure"
Torke AM, Corbie-Smith G, Branch WT. African American patients' perspectives on medical decision making. Archives of Internal Medicine, 164(5):525-30. 2004. [PubMed]
Corbie-Smith G, Moody-Ayers S, Thrasher A. Closing the circle: Minority inclusion in research and reduction of health disparities. Archives of Internal Medicine, 164(13):1362-4. 2004. [PubMed]
Van Riper M, Gallo A. Family, health, and genomics. In DR Crane & ES Marshall (Eds.), Handbook of families and health: Interdisciplinary perspectives. Thousand Oaks: Sage Publications Inc. 2005.
Van Riper M. Genetic testing and the family. Journal of Midwifery and Women's Health, 50: 227-233. 2005. [PubMed]
Rothschild BB, Estroff SE, Churchill LR. The cultural calculus of consent. Clinical Obstetrics and Gynecology, 48(3), 574-94. 2005. [PubMed]
Bailey DB, Skinner D, Warren SR. Newborn Screening for Developmental Disabilities: Reframing Presumptive Benefit. American Journal of Public Health, 95(11):1889-1893. 2005. [PubMed]
Henderson GE, Easter MM, Zimmer C, King NMP, Davis A, Rothschild B, Churchill L, Wilfond B, Nelson D. Therapeutic misconception in early phase gene transfer trials. Social Science and Medicine, 62: 239-53. 2006. [PubMed]
Skinner D, Schaffer R. Families and genetic diagnoses in the genomic and Internet age. Infants & Young Children, 19:16-24. 2006.
Van Riper M. Ethical, legal, and social implications. In M.S. Runge & W.C. Patterson (Eds.), Principles of molecular medicine. Pp. 61-68). Totowa, NJ: Humana Press Inc. 2006.
Van Riper M. Family nursing in the era of genomic health care: We should be doing so much more! Journal of Family Nursing, 12: 111-118. 2006. [PubMed]
Sterling R, Henderson GE, Corbie-Smith G. Public Willingness to Participate in and Public Opinions About Genetic Variation Research: A Review of the Literature. American Journal of Public Health, 96(11):1971-78. 2006. [PubMed]
Bailey DB, Beskow LM, Davis AM, Skinner D. Changing Perspectives on the Benefits of Newborn Screening. Mental Retardation and Developmental Disabilities Research Reviews, 12:270-279. 2006. [PubMed]
Whitmarsh I, Davis AM, Skinner D, Bailey DB. A place for genetic uncertainty: Parents valuing an unknown in the meaning of disease. Social Science & Medicine, 65:1082-1093. 2007. [PubMed]
Skinner D, Weisner T. Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13(4):302-12. 2007. [PubMed]
King NMP. Genes and TS: What will they tell us? Scientific, ethical, and social implications. In Walkup, J. (ed.): AIN: Tourette Syndrome. Lippincott Williams & Wilkins. [In Press]
King NMP, Churchill LR. Assessing and comparing potential benefits and risks of harm. In Oxford textbook of clinical research ethics, E Emanuel, D Wendler, R Crouch (Eds.). Oxford University Press. [In Press]
King NMP. The glass house: Assessing bioethics. In The ethics of bioethics. L Eckenwiler, F Cohn (Eds). Johns Hopkins University Press. [In Press]
Schaffer R, Kuczynski K, Skinner D. Producing genetic knowledge and citizenship through the Internet: Mothers, pediatric genetics, and cybermedicine. Sociology of Health and Illness, 30(1):145-149. 2008. [PubMed]
Bailey D, Skinner D, Davis A, Whitmarsh I, Powell C. Concerns about expanded newborn screening: Fragile X syndrome as a prototype for emerging issues. Pediatrics, 121(3):693-704. 2008 [PubMed]
BIESECKER, Barbara Bowles "A Conference on Human Genome Research Implications"
Biesecker B.B., C.W. Vockley; and E. Conover. "Implications of Human Genome Research: Impact on Graduate Education in Genetic Counseling." Journal of Genetic Counseling. 1993; 2(3): 213-229. [PubMed]
Punales-Morefon, D. and Rapp., R. "Ethnocultural Diversity and Genetic Counseling Training: The Challenge for a Twenty-first Century." Journal of Genetic Counseling. 1993; 2(3): 155-158.
Rapp, R. "Amniocentesis in Sociocultural Perspective." Journal of Genetic Counseling. 1993; 2(3): 183-196. [PubMed]
Smith, A.C.M. "Update on Master's Genetic Counseling Training Programs: Survey of Curriculum Content and Graduate Analysis Summary." Journal of Genetic Counseling. 1993; 2(3): 197-211.
Smith, S.C.; N.S. Warren; and L. Misra. "Minority Recruitment into the Genetic Counseling Profession." Journal of Genetic Counseling. 1993; 2(3): 171-181.
Weil, J. and Mittman, I. "A Teaching Framework for Cross-Cultural Genetic Counseling." Journal of Genetic Counseling. 1993; 2(3): 159-69.
BLACKER, Deborah "Genetic Knowledge and Attitudes in Alzheimer's Disease"
Blacker, D. and Tanzi, R.E. . "Genetic Approaches to Risk Assessment: Implications for Early Diagnosis." In, L. Scinto and K. Daffner (ed). Early Diagnosis of Alzheimer's Disease. Totowa, New Jersey: Humana Press, 2000.
Blacker, D. "New Insights into Genetic Aspects of Alzheimer's Disease: Does Genetic Information Make a Difference in Clinical Practice?" Postgrad Med. 2000; 108(5): 119-22, 125-6, 129. [PubMed]
Tanzi, R.E. and D. Blacker. "Genetic Screening in Alzheimer's Disease: Usefulness, limits, and future prospects." Generations. 2001; 24(1): 58.
BLUMENTHAL, David "Academic-Industry Relationships in Genetics"
Blumenthal, D. "Academic-Industry Relationships in the Life Sciences." JAMA. 1992; 268(23): 3344-3349. [PubMed]
Blumenthal, D. "Growing Pains for New Academic/Industry Relationships." Health Affairs. 1994; 13(3): 176-193. [PubMed]
Campbell, E.G., Clarridge, B.R., Gokhale, M. et al. "Withholding Research Results in Academic Life Science." JAMA. 1997; 277(15): 1224-1228. [PubMed]
Blumenthal, D., Campbell, E.G., Anderson, M.S. et al. "Data Withholding in Academic Genetics: Evidence from a National Survey." JAMA. 2002; 287(4): 473-480. [PubMed]
BLUMENTHAL, David "Data-Sharing and Data-Withholding in Genetics Research"
Blumenthal, D., Campbell, E.G., Anderson, M.S. et al. "Data Withholding in Academic Genetics: Evidence from a National Survey." JAMA. 2002; 287(4): 473-480. [PubMed]
BOTKIN, Jeffrey "Behavioral and Psychosocial Effects of BRCA1 Testing"
Croyle, R.T., Smith, K.R., Botkin, J.R. B. Baty, B., Nash, J. "Psychological Responses to BRCA1 Mutation Testing: Preliminary Findings." Health Psychology, 16(1):63-72. [PubMed]
Baty, J.B., V.L. Venne, J. McDonald, R.T. Croyle, K. Smith, J.R. Botkin. "Genetic Counseling Protocols for BRCA1 testing." J Genetic Counseling. June 1997; 6(2): 223-244.
Botkin, J.R. "Ethical Issues and practical problems in preimplantation genetic diagnosis." American Journal of Law, Medicine and Ethics. 1998; 26: 17-28.
Smith, K.R., C.D. Zick, R.N. Mayer, J.R. Botkin. "Genetic testing and adverse selection in the market for life insurance: preliminary findings for the BRCA1 gene mutation." In Genetic Information: Acquisition, Access and Control. A.K. Thompson and R.F. Chadwick (Eds). New York, NY: Kluwer Academic/ Plenum Publishers, 1999. p.57-70.
Mayer, R.N., K.R. Smith, C.D. Zick, J.R. Botkin. "Coercion, control and consequences in genetic testing: views on insurance among tested individuals and the general public." In Genetic Information: Acquisition, Access and Control. Thompson and Chadwick (Eds). New York, NY: Kluwer Academic/ Plenum Publishers, 1999. p.41-56.
Smith, K.R, J. West, R. Croyle, J.R. Botkin. "Familial context of genetic testing for cancer susceptibility: moderating effect of siblings' test results on psychological distress one to two weeks after BRCA1 mutation testing." Cancer Epidemiol Biomarkers Prev. 1999 April; 8(4 Pt 2): 385-92.
Botkin J. "Ethical and Legal Issues in Genetic Testing for Cancer Susceptibility." in Shaw G. (ed) Cancer Genetics for the Clinician. Plenum Press. August 1999.
Hamann H.A., Croyle R.T., Venne V.L., Baty B., Smith K.R., Botkin J.R. "Attitudes toward the genetic testing of children among individuals tested for a BRCA1 gene mutation." American Journal of Medical Genetics. 2000; 92: 25-32.
Zick C.D., Smith K.R., Mayer R.N., Botkin J.R. "Genetic testing, adverse selection, and the demand for life insurance." American Journal of Medical Genetics. 2000; 93: 29-39.
BOTKIN, Jeffrey "Ensuring Confidentiality in the Publication of Pedigrees"
Botkin J. "Fetal privacy and confidentiality." Hastings Center Report. 1995; 25(5): 32-40.
Botkin, J.R., W.M. McMahon, K.R. Smith and J.E. Nash. "Privacy and Confidentiality in the Publication of Pedigrees: A Survey of Investigators and Biomedical Journals." JAMA. June 10, 1998; 279(22): 1808-1812. [Note editorials devoted to this article: "Privacy matters". Nature Genetics 1998; 19:207-208. Byers PH, Ashkenas J. "Pedigrees - Publish? or Perish the Thought" AJHG 1998; 63: 678; "Publication of Pedigrees" Oncology Times 1998; 20: 19-20.]
BOTKIN, Jeffrey "Genetic Testing and Screening for Mental Health Disorders"
Botkin J, McMahon W, Francis L (eds). Genetics and Criminality: The Potential Misuse of Scientific Information in Court Washington, DC: The American Psychological Association Press, 1999. 277p.
BOTKIN, Jeffrey "Prenatal Diagnosis and the Selection of Children"
Botkin J.R. "Ethical issues and practical problems in preimplantation genetic diagnosis." Am J Law, Med and Ethics. 1998; 26: 17-28. (Reprinted in Ethical Issues in Contemporary Medicine. B. Steinbock and J. Arras, eds.)
Botkin J.R. "Line erasing: developing professional standards for prenatal diagnosis." In Prenatal Testing and Disability Rights. E. Parens and A. Asch, eds. Washington, DC: Georgetown University Press, 2000: 288-307.
Botkin J.R. "Wrongful life and wrongful birth actions." In the Encyclopedia of Ethics, Legal, and Policy Issues in Biotechnology. John Wiley and Sons, 2000.
Botkin J.R. Review of "Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children 19s Futures" by Dena Davis, Cambridge Healthcare Quarterly. 2002; 11(1): 102-105.
Botkin J.R. "Preimplantation genetic diagnosis and the biologic selection of children." Kaiser Permanente Newsletter, January 2002.
Botkin J.R. "Wrongful life and wrongful birth: ethical and legal issues in prenatal diagnosis." Florida State University Law Review (In press).
BOWEN, Deborah "Counseling Strategies for Breast Cancer Risk"
Bowen, D.J., A. Farkas and S.W. Vernon. "Psychosocial Issues in Cancer Genetics: From the Laboratory to the Public." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 326-328. [Pubmed]
Durfy, S.J, D.J. Bowen, A. McTiernan et al. "Attitudes and Interest in Genetic Testing for Breast and Ovarian Cancer Susceptibility in Diverse Groups of Women in Western Washington." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 369-375. [PubMed]
McTiernan A., Kuniyuki A., Yasui Y., et al. "Comparisons of two breast cancer risk estimates in women with a family history of breast cancer." Cancer Epidem Biomar. 10(4): 333-338 April 2001.
Bowen D.J., Burke W., Yasui Y., et al. "Effects of risk counseling on interest in breast cancer genetic testing for lower risk women." Genet Med. 4(5): 359-365 September-October 2002.
Bowen D.J., Ludman E., Press N., et al. "Achieving utility with family history - Colorectal cancer risk." Am J Prev Med. 24(2): 177-182 February 2003.
Bowen D.J., Helmes A., Powers D., et al. "Predicting breast cancer screening intentions and behavior with emotion and cognition." J Soc Clin Psychol. 22(2): 213-232 April 2003.
Bowen DJ, Bourcier E, Press N, Lerwin FM, Burke W. "Effects of Individual and Family Functioning on Interest in Genetic Testing." Community Genetics 2004;7:25-32.
BROWN, R. Steven "State Governments and the Human Genome Project"
Brown, R.S. "The State Response to Genetic Research." Journal of State Government. Jul-Sep 1991; 64(3): 98-99.
Brown R.S. and K. Marshall, eds. Advances in Genetic Information: A Guide for State Policy Makers. Lexington, KY: The Council of State Governments; 1992. 123p.
Brown, R.S. "State Governments and the Human Genome Project." Genetic Resource. 1992; 6(2): 19-21.
BROWNER, Carole "Genetic Counseling Strategies with Mexican-Origin Women"
Balzano S, Preloran HM, Browner CH. "El protocolo medico como una forma de performance cultural: La neutralidad profesional y su efecto en la vida de los Pacientes y sus Familias" (The consequences of competing client and clinician agendas in prenatal care) Revista de Investigaciones Folclóricas. 2002; 17:145-155.
Browner CH, Preloran HM, Casado MC, Bass H, Walker A. "Genetic Counseling Gone Awry: Some Consequences of Miscommunication between Prenatal Genetic Service Providers and Latina Clients." Social Science and Medicine. 2003; 56(9): 1933-46.
Preloran HM, Balzano S, Browner CH. "The Roles of Trust and Cross-Cultural Miscommunication in Clinical Decision-Making." Californian Journal of Health Promotion. 2003; 1(2):198-207.
Preloran HM, Browner CH, Balzano S. "Globalizacion y salud: El impacto de un protocolo medico sin fronteras." (Globalization and Health: The Impact of a Medical Protocol Without Borders). Revista Anual Realidad del Cono Sur. 2005 (Buenos Aires: Universidad Argentina John F. Kennedy).
Browner CH, Preloran HM. "Culture and Communication in the Realm of Fetal Diagnosis. Unique Considerations for Latino Patients." In, Neil F. Sharpe and Ronald F. Carter, eds. Genetic Testing: Current Practices, Ethical Concerns, Legal Considerations. NY: John Wiley & Sons. (In press)
Browner CH, Preloran HM. "Entering the Field: Recruiting Latinos for Ethnographic Work." In, Richard Wright, ed. Handbook of Fieldwork. London: Sage. (In press)
Preloran HM, Browner CH, Lieber E. "Impact of Interpreters' Approach on Latinas' Use of Amniocentesis." Special Issue on Public Health Genetics, Health Education and Behavior. (In press)
BROWNER, Carole "Use of Amniocentesis by Mexicans and Mexican-Americans"
Preloran, H.M. and C.H. Browner. "Paternidad Prenatal: parejas de origen mexicano decidiendo sobre el uso del diagnostico fetal." Revisa Anual de Investigaciones Folkloricas. 1997; 12.
Preloran, H.M. and Browner, C.H. "Rol de la tradición en la prácticas del embarazo: efectos de la información genética entre Mexicanas residentes en Estados Unidos." Revista de Investigaciones Folkloricas. 1997; 12: 67-75.
Browner, C.H. and Preloran, H.M. "Male Partners' Role in Latinas' Amniocentesis Decisions." Journal of Genetic Counseling. 1999; 8(2): 85-108.
Preloran, H.M., Browner, C.H., and Balzano, S. "Texto y contexto en el analisis de la narrativa: Renegociación de roles en situaciones médicas con peligro de vida." Scripta Ethnologica. 1999; 20: 23-36. (Buenos Aires: Centro Argentino de Ethnologia Americana).
Browner, C.H., Preloran, H.M., and Cox, S.J. "Ethnicity, Bioethics, and Prenatal Diagnosis: the Amniocentesis Decisions of Mexican-origin Women and their Partners." American Journal of Public Health. 1999; 89(11): 1658-66.
Browner, C.H. and Preloran, H.M. "Para sacarse la espina (To Get Rid of the Doubt): Mexican Immigrant Women's Amniocentesis Decisions." In, Ann R. S 18tnan, Nelly Oudshoorn, and Marta Kirejczyk, eds. Bodies of Technology: Women's Involvement with Reproductive Medicine, pp. 368-383. Columbus: Ohio State University Press. 2000.
Browner CH. "Situating Women's Reproductive Activities." American Anthropologist. 2000; 102(4):773-88.
Browner, C.H. and Preloran, H.M. "Latinas, Amniocentesis and the Discourse of Choice." Culture, Medicine, and Psychiatry. 2000; 24(3): 353-75.
Browner, C.H. and Preloran, H.M. "Interpreting Low-Income Latinas' Amniocentesis Refusals." Hispanic Journal of Behavioral Sciences 2000; 22(3): 346-68.
Preloran, H.M., Browner, C.H. and Lieber, E. "Strategies for Motivating Latino Couples' Participation in Qualitative Health Research." American Journal of Public Health. 2001; 91(11): 1832-1841.
Root R and Browner CH. "Practices of the Pregnant Self: Compliance with and Resistance to Biomedical Prenatal Norms." Culture, Medicine, and Psychiatry. 2001; 25(2):195-223.
Markens S, Browner CH, Preloran HM. "Im Not the One Theyre Sticking the Needle Into: Latino Couples, Fetal Diagnosis, and the Discourse of Reproductive Rights." Gender & Society. 2003; 17(3):462-81.
Browner CH and Preloran HM. "Expectations, Emotions, and Medical Decision Making: A Case Study on the Use of Amniocentesis." Transcultural Psychiatry. 2004; 41(4): 427-444.
Browner CH, Preloran HM, and Balzano S. (Accepted for publication.) "Identity Management in an At-Risk Medical Situation." In, Mary Lawler and Cheryl Mattingly, eds. The Engaged Self.
BUCHANAN, Allan "The Human Genome Initiative and Limits of Ethical Theory"
Buchanan, A.E., D.W. Brock, N. Daniels, and D. Wickler. From Chance to Choice: Genetics & Justice. Cambridge, UK: Cambridge University Press, 2000. 398p.
BULGER, Ruth "Predicting Future Disease: Issues in the Development, Application, and Use of Tests for Genetic Disorders"
Institute of Medicine Committee on Assessing Genetic Risks. Assessing Genetic Risks: Implications for Health and Social Policy. eds. L.B. Andrews et al. Washington, DC: National Academy Press, 1994. 338p.
BURHANSSTIPANOV, Linda "Genetic Education for Native Americans"
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.
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.
CALLAHAN, Daniel "Ethical Priorities in for Clinical Uses of Genome Research"
Wilfond, B.S. and K. Nolan. "National Policy Development for the Clinical Application of Genetic Diagnostic Technologies: Lessons from Cystic Fibrosis." JAMA. December 1993; 270(24): 2948-2954.
Boyle, P.J. et al. "Public Priorities for Genetic Services." Hastings Center Report. May-June 1995; 25(3, Special Supplement).
CALLAHAN, Daniel "The Genetic Prism: Understanding Health and Responsibility"
Boyle, P.J. et al. "Genetic Grammar: Health, Illness, and the Human Genome Project." Hastings Center Report. 1992; Special Supplement 22(4): S1.
CAPLAN, Arthur "Ethics, Values, Professional Responsibilities"
Bartels, D.M.; B.S. LeRoy; and A.L. Caplan, eds. Prescribing Our Future: Ethical Challenges in Genetic Counseling. Hawthorne, NY: Aldine de Gruyter, 1993. 186p.
Caplan, A.L. "Neutrality is Not Morality: The Ethics of Genetic Counseling." In: Prescribing Our Future, eds. Bartels et al. Hawthorne, NY: Aldine de Gruyter, 1993.
LeRoy, B.S. "When Theory Meets Practice: Challenges to the Field Genetic Counseling." In: Prescribing Our Future, eds. Bartels et al. Hawthorne, NY: Aldine de Gruyter, 1993.
CAPRON, Alexander Morgan "Genome Mapping: Implications for Health and Life Insurance"
Capron, A.M. "Human Genome Research in an Interdependent World." Kennedy Institute of Ethics Journal. September 1991; 1(3): 247-251.
Capron, A.M. "Hedging Their Bets." Hastings Center Report. May-June 1993; 23(3): 30-32.
Capron, A.M. "Fashioning a Reasonable Interim Policy: Conclusions of the Insurance Project." p. 55-62, in Genetic Testing: Implications for Insurance. Chicago: Actuarial Foundation, 1998.
CARROLL, Ann "A Model for State Policy on Genetic Testing/Screening"
The New York State Task Force on Life and the Law. Genetic Testing and Screening in the Age of Genomic Medicine. November 2000. 411pp.
Carroll A.M., Coleman C.H. "Closing the gaps in genetics legislation and policy: A report by the New York State Task Force on Life and the Law." Genetic Testing. December 2001; 5(4): 275-280.
CASKEY, C. Thomas "National Study Conference on Genetics, Religion, and Ethics"
Genetics, Religion and Ethics Project, The Institute of Religion and Baylor College of Medicine, the Texas Medical Center, Houston, Texas, June 1, 1992, "Summary Reflection Statement" Human Gene Therapy. October 1992; 3(5): 525-527.
Nelson, J.R. On the New Frontiers of Genetics and Religion. Grand Rapids, MI: William B. Eerdmans, 1994. 212p.
CHEDD, Graham "The Secret of Life"
WGBH, "The Secret of Life" (Video series -- 8 one hour programs for PBS broadcast.)
Levine, J. and D. Suzuki. The Secret of Life: Redesigning the Living World. Boston: WGBH Educational Foundation, 1993. 280p.
Levine, J. and D. Suzuki. The Secret of Life: Redesigning the Living World. Boston: WGBH Educational Foundation, 1993. 280p.
CHO, Mildred "BRCA1/2 Testing: Patient Uptake and Treatment Choices"
Cho, M.K., P. Sankar, P.R. Wolpe and L. Godmilow. "Commercialization of BRCA1/2 Testing: Practitioner Awareness and use of a new genetic test." Am J Med Genet. 1999; 83: 157-163.
CHO, Mildred "Center for Integrating Ethics & Genetic Research"
Lee SS-J, Mountain J, Koenig, BA. The Meanings of Race in the New Genomics. GE Henderson, SE Estroff, LR Churchill, NMP King, J Oberlander, and RP Strauss (Eds), The Social Contributions to Health, Difference and Inequality: The Social Medicine Reader. 2nd Edition, Volume II. Duke University Press. 2005.
Magnus D. The Ethics of Preimplantation Genetic Diagnosis. Fertility Today, v.1, no.1, 2005.
Lee, S.S. "Racializing Drug Design: Implications of Pharmacogenomics for Health Disparities." American Journal of Public Health. 2005; 95(12): 2133-38. [PubMed]
Lee SS-J. Racializing Drug Design: Pharmacogenomics and Implications for Health Disparities. American Journal of Public Health, 95(12): 2133-2138. 2005. [PubMed]
Illes J, Blakemore C, Hansson M, Hensch T, Leshner A, Maestre G, Magistretti P, Quirion R, Strata P. International perspectives on engaging the public in neuroethics. Nature Reviews Neuroscience, 6(12):977-982. 2006 [PubMed]
Sankar P, Wolpe PR, Jones NL, Cho MK. How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States. Community Genet, 9(2):78-86. 2006. [PubMed]
Sankar P, Cho MK, Wolpe PR, Schairer C. What is in a cause? Exploring the relationship between genetic cause and felt stigma. Genet Med, 8(1):33-42. 2006. [PubMed]
Butte AJ. Kohane IS. Creation and implications of a phenome-genome network. Nature Biotechnology, 24(1):55-62. 2006. [PubMed]
Magnus D, Cho MK. A commentary on oocyte donation for stem cell research in South Korea. Am J Bioeth 6(1):W23-4. 2006. [PubMed]
Illes J. Pandora's box' of incidental findings in brain imaging research. Nature Clinical Practice Neurology 2:60-61. 2006 [PubMed]
Illes J, De Vries R, Cho MK, Schraedley-Desmond P. ELSI Priorities for Brain Imaging. Am J Bioeth 2(6):W24-31. 2006. [PubMed]
Greely HT. Stanford Symposium on Preimplantation Genetic Diagnosis: An Introduction - and Some Conclusions. 85 FERTILITY & STERILITY 1631-32. 2006.
Greely HT. Neuroethics and ELSI: Similarities and Differences. 7 MINN. J. L. SCI. & TECH, 599-637. 2006
Cho MK. Racial and ethnic categories in biomedical research: there is no baby in the bathwater. J Law Med Ethics, 34(3):497-9. 2006. [PubMed]
Singh J, Hallmayer J, Illes J. Interacting and paradoxical forces in neuroscience and society. Nature Reviews Neuroscience, 8:153-160. 2007. [PubMed]
Sankar, P, Cho, MK and Mountain, J. Race and ethnicity in genetic research. Am J Med Genet, 143(9):961-970. 2007. [PubMed]
Greely HT. The Uneasy Ethical and Legal Underpinnings of Large-Scale Genomic Biobanks. ANN. REV. HUM GENETICS & GENOMICS, 8:343-364. 2007. [PubMed]
Tabor HK, Cho MK. Ethical Implications of Array CGH in complex phenotypes: points to consider in research. Genetics in Medicine, 9(9):626-631. 2007 [PubMed]
McGuire AL, Cho MK, McGuire SE, Caulfield T. The future of personal genomics. Science, 317(5845):1687. 2007. [PubMed]
Cho MK. How to understand incidental findings in the context of genetics and genomics. Am J Law Medicine Ethics [In press]
McGuire AL, Caulfield T, Cho MK. Research ethics and the challenge of whole genome sequencing. Nature Reviews Genetics, 9(2):152-156. 2008. [PubMed]
Caulfield T, McGuire AL, Cho MK, et al. Research ethics recommendations for whole genome research: Consensus statement. PLoS Biology, 6(3):0430-35. 2008. [PubMed]
Cho MK, Sabeti PC, Tishkoff SA. Ethical and social implications of research on natural selection in humans. Trends in Genetics, 2008. [In Press]
Cho MK, Tobin SL, Greely HT, McCormick J, Boyce A, Magnus D. Strangers at the Benchside: Research Ethics Consultation. American Journal of Bioethics, 2008. [In Press]
Cho MK, Tobin SL, Greely HT, McCormick J, Boyce A, Magnus D. Research ethics consultation: the Stanford experience. IRB: Ethics & Human Research, 2008. [In Press]
CHO, Mildred "Effects of Gene Patents on Genetic Testing And Research"
Caulfield, T., Gold, E.R. and Cho, M.K. "Patenting human genetic material: Refocusing the debate." Nature Reviews Genetics. 2000; 1: 227-231. [PubMed]
Merz J.F., Kriss A.G., Leonard D.G.B., Cho M.K. "Diagnostic testing fails the test - The pitfalls of patents are illustrated by the case of haemochromatosis." Nature. 2002; 415(6872): 577-579.
Merz J.F., Magnus D., Cho M.K., et al. "Protecting subjects' interests in genetics research." Am J Hum Genet. 2002; 70(4): 965-971. [PubMed]
Merz J.F., Leonard D.G.B., Kriss A.G., Cho M.K. "Industry opposes genomic legislation." Nature Biotechnology. 2002; 20(7): 657-657 (letter to the editor). [PubMed]
Henry M.R., Cho M.K., Weaver M.A., Merz J.F. "DNA patenting and licensing." Science. 2002; 297(23): 1279. [PubMed]
Cho, M.K., Illangasekare S., Weaver M.A., Leonard D.G.B., Merz J.F. "Effects of Patents and Licenses on the Provision of Clinical Genetic Testing Services." Journal of Molecular Diagnostics. 2003; 1 (5): 3-8. [PubMed]
Henry M.R., Cho M.K., Weaver M.A., Merz J.F. "A pilot survey on the licensing of DNA inventions." Journal of Law, Medicine & Ethics. 2003; 31(3):442-9. [PubMed]
Merz, J.F. and Cho, M.K. "What are gene patents and why are people worried about them?" Community Genetics. 2005; 8:203-208. [PubMed]
CHURCHILL, Larry "Research, Treatment and Informed Consent in Gene Therapy"
Churchill, L.R., M.L. Collins, N.M.P. King, S.G. Pemberton and K.A. Wailoo. "Genetic Research as Therapy: Implications of 'Gene Therapy' for Informed Consent." Journal of Law, Medicine & Ethics. 1998; 26: 38-47.
Davis, A.M. "Exception from Informed Consent for Emergency Research: Drawing on Existing Skills and Experience." IRB: a Review of Human Subjects. 1998; 20(5): 1-8.
King, N.M.P. "Rewriting the 'Points to Consider': The Ethical Impact of Guidance Document Language." Human Gene Therapy. January 1999; 10: 133-139.
CITRIN, Toby "Genome Technology & Reproduction - values & public policy"
University of Michigan and the Michigan State University Center for Ethics and Humanities in the Life Sciences. "Genome Horisons: Public Deliberations & Policy Pathways." Project Reports and Conference Proceedings. August 1998. 96p.
Communities of Color and Genetics Policy Project. Voices and Views: Communities of Color and Genetics Policy Project Newsletter. Multiple Issues beginning in June 2000.
CLAYTON, Ellen Wright "Public Health and Genetics"
Clayton, E.W. "Through the Lens of the Sequence." Genome Research 2001; 11: 659-64.
Clayton EW. The Complex Relationship of Genetics, Groups, and Health: What It Means for Public Health. Journal of Law, Medicine & Ethics, 30:290-297. 2002. [PubMed]
CODORI, Anne-Marie "Gene Tests for Colon Cancer Risk: Psychosocial Studies"
Codori, A.M., G.M. Petersen, D.L. Miglioretti et al. "Attitudes toward Cancer Gene Testing: Factors Predicting Test Uptake." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 345-351. [Pubmed]
Petersen, G.M., E. Larkin, A.M. Codori et al. "Attitudes toward Colon Cancer Gene Testing: Survey of Relatives of Colon Cancer Patients." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 337-344. [Pubmed]
CONDIT, Celeste "An Empirical Study of Change in Public Genetic Discourse"
Condit, C.M., N. Ofulue and K. Sheedy. "Determinism and Mass Media Portrayals of Genetics." American Journal of Human Genetics. April 1998; 62: 979-84.
Condit, C.M. "Reply to Nelkin and Lindee." American Journal of Human Genetics. August 1998; 63: 663-4.
Condit, C.M. The Meanings of the Gene: Heredity in 20th Century American Public Discourse. University of Wisconsin Press. October 1999. 256p.
CONDIT, Celeste "Race and Public Communication about Human Variation"
Condit C.M., Ferguson A, Kassel R, et al. "An exploratory study of the impact of news headlines on genetic determinism." Sci Commun. 22(4): 379-395 June 2001.
Condit C. "What is 'public opinion' about genetics." Nat Rev Genet October 2001; 2(10): 811-815.
Condit C.M., Achter P.J., Lauer I., et al. " The changing meanings of "mutation": A contextualized study of public discourse." Hum Mutat 19(1): 69-75 2002.
Condit C.M., Parrott R., Harris T.M. "Lay understandings of the relationship between race and genetics: Development of a collectivized knowledge through shared discourse." Public Underst Sci. 11(4): 373-387 October 2002.
Bates, B.R., Templeton, A., Achter, P.J., Harris, T.M., Condit, C.M. "What does "a gene for heart disease" mean? A focus group study of public understandings of genetic risk factors." American Journal of Medical Genetics. 2003; 119(2): 156-61. [PubMed]
Condit C., Templeton A., Bates B., Bevan J.L., Harris T.M. "Attitudinal barriers to delivery of race-targeted pharmacogenomics among informed lay persons." Genetics in Medicine. September/October 2003; 5(5): 385-392.
Bevan J.L., Lynch J.A., Dubriwny T.N., et al. "Informed lay preferences for delivery of racially varied pharmacogenomics." Genetics in Medicine. September/October 2003; 5(5): 393-399.
Dubriwny TN, Bates BR, Bevan JL. "Lay Understandings of Race: Cultural and Genetic Definitions." Community Genet. 2004;7:185-195.
Condit, C.M., Parrott, R.L., Harris, T.M., Lynch, J.A., Dubriwny, T.N. "The role of 'genetics' in popular understandings of race in the United States." Public Understandings of Science 2004; 13(3): 249-72. [PubMed]
Bates, B.R. and Harris, T.M. "The Tuskegee study of untreated syphilis and public perceptions of biomedical research: A focus group study." Journal of the National Medical Association. 2004; 96(8): 1051-64. [PubMed]
Condit, C.M., Dubriwny, T.N., Lynch, J.A., Parrott, R. L. "Lay people's understanding of and preference against the word 'mutation'." American Journal of Medical Genetics. 2004; 130(3): 245-50. [PubMed]
Bates, B.R., Poirot, K., Harris, T.M., Achter, P.J., Condit, C.M. (2004). "Evaluating direct-to-consumer marketing of race-based pharmacogenomics: A focus group study of public understandings of applied genomic medication." Journal of Health Communication. 2004; 9(6): 541-59. [PubMed]
Condit, C.M., Parrott, R.L., Bates, B.R., Bevan, J.L., Achter, P.J. "Exploration of the impact of messages about genes and race on lay attitudes." Clinical Genetics 2004; 66(5): 402-8. [PubMed]
Condit, C., Parrott, R. "Perceived levels of health risk associated with linguistic descriptors and type of disease." Science Communication 2004; 26(2): 152-161.
Bates, B.R. "Public culture and public understandings of genetics: A focus group study." Public Understanding of Science. 2005; 14(1): 47-65. [PubMed]
Bates, B. R., Lynch, J. A., Bevan, J. L., & Condit, C. M. (2005). "Warranted concerns, warranted outlooks: A focus group study of public understandings about genetics research." Social Science in Medicine. 2005; 60(2): 331-344. [PubMed]
Parrott, R.L., Silk, K.J., Dillow, M.R., Krieger, J.L., Harris, T.M., Condit, C.M. "The development and validation of tools to assess genetic discrimination and genetically based racism." J Natl Med Assoc. 2005; 97(7): 980-90. [PubMed]
Lynch, J., Condit, C.M. "Genes and race in the news: A test of competing theories of news coverage". Am J Health Behav. 2006; 30(2): 125-35. [PubMed]
Lynch, J.A., Dubriwny, T.N. (in press). "Drugs and double binds: Racial identification and pharmacogenomics in a system of binary race logic." Health Communication. 2006; 19(1): 61-73. [PubMed]
COOK DEEGAN, Robert "Duke Center for the Study of Public Genomics"
Maurer S.M., Rai A., Sali A. "Finding cures for tropical diseases: Is open source an answer?" PloS Med 2004; 1(3): e56. [PubMed]
Reichman JH, Lewis T. "Using liability rules to stimulate local innovation in developing countries: Application to traditional knowledge," (Chapter 13) in International Public Goods and Transfer of Technology Under Globalized Intellectual Property Regime, eds. K. Maskus & J. Reichman. Cambridge University Press, Cambridge, UK. 2005
Zick C, Mathews C, Roberts JS, Cook-Deegan R, Pokorski R and R. Green, "Genetic Testing for Alzheimer's Disease And Its Impact on Insurance Purchasing Behavior." Health Affairs. 2005; 24: 483. [PubMed]
Rai A. "'Open and Collaborative Research: A New Model for Biomedicine." (Chapter 6) in Intellectual Property Rights in Frontier Industries: Biotechnology and Software. ed. R Hahn. AEI-Brookings Press. 2005.
Reichman JH and T Lewis. Using Liability Rules to Stimulate Local Innovation in Developing Countries: Application to Traditional Knowledge, in International Public Goods and Transfer of Technology Under a Globalized Intellectual Property Regime. Edited by KE Maskus & JH Reichman. Cambridge University Press. Pp. 337-366. 2005.
Reichman, J.H. The International Legal Status of Undisclosed Clinical Trial Data: From Private to Public Goods? Roffe, P., et al (eds.) Negotiating Health: Intellectual Property and Access to Medicines. Earthscan. pp. 133-50. 2006.
Angrist M., Cook-Deegan R.M. "Who Owns the Genome?" The New Atlantis. Winter 2006: 87-96.
Pressman, L., Burgess, R., Cook-Deegan, R., McCormack, S.J., Nami-Wolk, I., Soucy, M. and Walters, L. "The Licensing of DNA Patents by US Academic Institutions: An Empirical Survey." Nature Biotechnology 24(1):31-9. [Full Text]
So A.D., Rai A.K., Cook-Deegan, R.M. "Intellectual Property Rights and Technology Transfer: Enabling Access for Developing Countries." Commissioned Report for the World Health Organization Commission on Intellectual Property Rights, Innovation, and Public Health. (Under review)
Waldby, C. and Mitchell, R. Tissue Economies: Blood, Organs and Cell Lines in Late Capitalism. Duke University Press. 2006. [Book Abstract]
Eisenberg R., Rai, A . "Harnessing and Sharing the Benefits of State-Sponsored Research: Intellectual Property Rights and Data Sharing in California's Stem Cell Initiative." Berkeley Technology Law Journal 2006; 21(3).
Kepler T, Marti-Renom M, Maurer S, Rai A, Taylor G, Todd M. Open Source Research: The Power of Us. Australian Journal of Chemistry, 59: 291-294. 2006.
Cook-Deegan R, Dedeurwaerdere T. The Science Commons in Life Science Research: Structure, Function, and Value of Access to Genetic Diversity. International Social Science Journal (UNESCO) 58(188): 299-318. 2006.
Cook-Deegan, R. and McGeary, M.: In Stevens, R.A., Rosenberg, C.E., and Burns, L.R. (eds.) The Jewel in the Federal Crown? History, Politics, and the National Institutes of Health. Forthcoming in History and Health Policy in the United States: Putting the Past Back In. Rutgers University Press. 2006.
Caulfield T, Cook-Deegan RM, Kieff FS, Walsh J. Evidence and anecdotes: an analysis of human gene patenting controversies. Nature Biotechnology. 24(9):1091-4. 2006. [PubMed]
Wald P. Blood and Stories: How Genomics is Changing Race, Medicine, and Human History.
Patterns of prejudice: Race and Contemporary Medicine (special issue, ed. Sander Gilman) 40(4/5):303-33. 2006.
Crossman CR. Arming our Enemies: how parallel imports could increase Anti-microbial resistance. North Carolina Journal of International Law & Commercial Regulation, 31(4):823-845. 2006.
Rai A. Open and Collaborative? Biomedical Research: Theory and Evidence. In Brian Kahin and Dominique Foray, eds, Advancing Knowledge and the Knowledge Economy. MIT Press. 2006.
Reichman JH. The International Legal Status of Undisclosed Clinical Trial Data: From Private to Public Goods? In Negotiating Health: Intellectual Property and Access to Medicines. Pedro Roffe, Geof Tansey and David Vivas-Eugui, Eds. Earthscan, pp. 133-150. 2006.
Reichman LT, So A. The Case for Government Oversight and Government Funding of Clinical Trials. Economists' Voice 4(1):3. 2007.
Benjamin and Rai, Who's Afraid of the APA: What the Patent System Can Learn from Administrative Law. Georgetown L.J., 95:269-336. 2006.
Cook-Deegan R. The Science Commons in Health Research: Structure Function and Value. Journal of Technology Transfer, 32: 133-156. 2007.
Kumar S, Rai A. Synthetic Biology: The Intellectual Property Puzzle. Texas Law Review, 85:1745-1768. 2007.
Reichman JH, Dinwoodie GB, Samuelson P. A Reverse Notice and Takedown Regime to Enable Public Interest Uses of Technically Protected Copyrighted Works. Berkeley Journal of Technology, 22(1): 1-66. 2007.
Reichman JH, Dinwoodie GB, Samuelson P. A Reverse Notice and Takedown Regime to Enable Public Interest Uses of Technically Protected Copyrighted Works. Berkeley Journal of Technology, 22(1): 1-66. 2007.
Reichman JH, Dinwoodie GB, Samuelson P. A Reverse Notice and Takedown Regime to Enable Public Interest Uses of Technically Protected Copyrighted Works. Berkeley Journal of Technology, 22(1): 1-66. 2007.
Abbott FM, and Reichman JH. The Doha Round's Public Health Legacy: Strategies for the Production and Diffusion of Patented Medicines under the Amended TRIPS Provisions. Journal of International Economic Law, 10(4):921-987. 2007.
Feldman MP, A Colaianni and C Liu. Lessons from the Commercialization of the Cohen-Boyer Patents: The Stanford University Licensing Program. In Intellectual Property Management in Health and Agricultural Innovation: A Handbook of best Practices (eds. A Krattiger, RT Mahoney, L Nelsen, et al.). MIHR: Oxford, U.K., and PIPRA: Davis, U.S.A. 2007.
Lewis T, Reichman JH, and So A. The Case for Government Oversight and Government Funding of Clinical Trials. Economist's Voice Berkeley E-Press, Vol. 4, No. 1. 2007.
Lewis T, Reichman JH, and So A. The Case for Government Oversight and Government Funding of Clinical Trials. Economist's Voice. Berkeley E-Press, Vol. 4, No. 1. 2007.
Reichman J, Uhlir PF, Ritch HJ. Access to Scientific and Technological Knowledge: UNESCO's Past, Present and Future Roles. In Standard-setting in UNESCO, Vol. 1, Normative Action in Education, Science and Culture (ed. AA Yusuf). UNESCO Publishing; Martinus Nijhoff Publishers Leiden/Boston. 2007.
Reichman JH and Dreyfuss RC. Harmonization without Consensus: Critical Reflections on Drafting a Substantive Patent Law Treaty. 57 Duke Law Journal 85. 2007.
Reichman JH and Uhlir P. Trends Affecting Access to Scientific Data from Government Funded Research. In The Global Flow of Information. Jack Balkin and Eddan Katz, eds., NYU Press, 2007.
Reichman JH. Nurturing a Transnational System of Innovation. in Issues of Public Policy and Trade in Intellectual Property Law (Inge Govaere, ed., Peter Lang, European Academic Publishers, Switz., "College of Europe Studies", 2007.
Rai, Reichman, Uhlir, and Crossman. Pathways Across the Valley of Death: Novel Intellectual Property Strategies for Accelerated Drug Discovery. Yale Journal of Health Law, Policy, and Ethics, Vol. 8, No. 1. 2008.
CORBIE-SMITH, Giselle "Learning About Research in North Carolina (LeARN)"
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):1971-8. 2006. [PubMed]
COWAN, Ruth "History of Prenatal Diagnosis"
Cowan, R. "Genetic Technology and Reproductive Choice: An Ethics for Autonomy." In: The Code of Codes: Scientific and Social Issues in the Human Genome Project, eds. D.J. Kevles and L. Hood. Cambridge, MA; Harvard University Press, 1992. 244-264.
Cowan, R. "Aspects of the History of Prenatal Diagnosis." In: "Reproductive Genetic Testing: Impact upon Women." Fetal Diagnosis and Therapy, eds. Evans, Rothenberg and Thomson. 1993; 8(supplement): 10-17.
DALY, Mary "Coping with Genetic Risk for Breast and Ovarian Cancer"
Daly, M., J. Farmer, C. Harrop-Stein et al. "Exploring Family Relationships in Cancer Risk Counseling Using the Genogram." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 393-398. [Pubmed]
DAVIS, John "Concerns of Evangelicals about Genetic Interventions"
John J. Davis "Ethical Concerns of American Evangelicals Relative to Genetic Interventions." Ethics and Medicine (Accepted for publication).
DESNICK, Robert "Genetic Testing in the Ashkenazi Jewish Population"
Eng, C.M., C. Schechter, Robinowitz et al. "Prenatal Genetic Carrier Testing Using Triple Disease Screening." JAMA. October 1997; 278(15): 1268-1272.
DRESSER, Rebecca "Germ Line Interventions and Human Research Ethics"
Dresser R. "Designing Babies: Human Research Issues," IRB: Ethics & Human Research. 2004; 26:1-8. [PubMed]
Dresser R. "Genetic Modification of Preimplantation Embryos: Toward Adequate Human Research Policies." Milbank Quarterly. 2004; 82:195-214. [PubMed]
DUSTER, Troy "Pathways to Genetic Screening: Patient Knowledge - Patient Practices"
Duster, T. "Human Genetics, Evolutionary Theory, and Social Stratification." In: The Genetic Frontier: Ethics, Law and Policy, eds. M.S. Frankel and A. Teich. Washington, DC: AAAS; 1993, 209-247.
Duster, T., "Depistage Genetique et Resurgence de L'Eugenisme," Rev Quad, Spring 1994, 167-82.
Ragins, A. "Why Self-Care Fails: Implementing Policy at a Low-Income Sickle Cell Clinic," Qual Sociol 1995; 18(3): 331-56.
Duster, T. "The Hidden History of Scientific Racism," Crossroads February 1995; 48: 14-19.
Duster, T. "The Prism of Heritability and the Sociology of Knowledge," pp. 119-30 in Naked Science: Anthropological Inquiry into Boundaries, Power, and Knowledge, Laura Nader, Ed. New York; Routledge Press, 1996.
Yamashita, R.C. "Bringing Disease Back In: Provisional Models and Implications for Future Research," Sociol Health Care 1997; 14.
Duster, T. "Molecular Halos and Behavioral Glows," pp. 215-22 in Plain Talk About the Human Genome Project, Edward Smith and Walter Sapp, Eds. Tuskegee, Alabama; Tuskegee University, 1997.
Duster, T. "Persistence and Continuity in Human Genetics and Social Stratification," pp. 218-38 in Genetics: Issues of Social Justice, Ted Peters, Ed. Cleveland; Pilgrim Press, 1998.
Anspach, R. and D. Beeson, "Emotions in Medical and Moral Life." Chapter 4 in Bioethics in Context, Barry Hoffmaster, Ed. Cambridge University Press, 1999.
Beeson, D. and T. Doksum, "Family Values and Resistance to Genetic Testing," Chapter 9 in Bioethics in Context, Barry Hoffmaster, Ed. Cambridge University Press, 1999.
Duster, T. "The Social Consequences of Genetic Disclosure" in Behavioral Genetics: The Clash of Culture and Biology, Ronald A. Carson and Mark A. Rothstein, Eds. Baltimore; Johns Hopkins University Press, 1999.
ELIAS, Sherman "Human Genome Workshop: Ethics, Law and Social Policy"
Annas, G.J. and S. Elias. "Social Policy Issues Raised by the Human Genome Project." Genetic Resource. 1992; 6(2): 32-37.
Annas, G.J. and S. Elias, eds. Gene Mapping: Using Law and Ethics as Guides. New York: Oxford University Press, 1992. 291p.
Annas, G.J. and S. Elias. "The Human Genome Project: Social Policy Research Priorities." Politics and the Life Sciences, August 1992: 11(2); 245-249.
ELLINGTON, Lee "Communication Analysis of BRCA1 Genetic Counseling"
Ellington L., Roter D., Dudley W.N., Baty B.J., Upchurch R., Larson S., Wylie J.E., Smith K.R., Botkin J.R. "Communication Analysis of BRCA1 Genetic Counseling." Journal of Genetic Counseling. Vol. 14, No. 5, October 2005 [PubMed]
ELLIOT, Bruce Jr. "Ethnicity, Citizenship, Family: Identity after the HGP"
Brodwin P. "Genetic, Identity, and the Anthropology of Essentialism." Anthropological Quarterly 2002. 75(2); 323-330. [PubMed Central]
Parry, S., Elliott, C. "Genetic Ancestry Tracing and American Indian Identity." The American Philosophical Association Newsletter on Philosophy and Medicine. Spring (revised) 2002; 1(2): 9-12. [PubMed]
Elliott C., Brodwin P. "Identity and genetic ancestry tracing." BMJ. 2002; 21-28(325): 1469-71. [PubMed]
Brodwin, P. "Genetics, Identity, and the Anthropology of Essentialism." Anthropological Quarterly. 2002; 75(2): 323-330. (Reprinted in 'Mixed Race' Studies: A Reader. Jayne O. Ifekwunigwe. London: Routledge, 2004. Pp. 116-122). [PubMed]
Elliott C. "Adventures in the gene pool." Wilson Quarterly. 2003; 12-21.
Zoloth, L. "Uncourtable as the Stars: A Jewish View of Inheritable Genetics Interventions," in Designing Our Descendants: The Promises and Perils of Genetic Modification. Marc Frankel and Audrey Chapman eds. Baltimore MD: Johns Hopkins Press, 2003. pp. 212-237.
Zoloth L. "Each One a World," in Sacred Rights: The Case for Contraception and Abortion in World Religions. Daniel McQuire ed. Oxford University Press, 2003. pp. 21-54.
Johnston J. "Resisting a Genetic Identity: The Black Seminoles and Genetic Tests of Ancestry." Journal of Law, Medicine and Ethics. 2003; 31(2):262-71. [PubMed]
Johnston J., Elliott C., eds. "Identity and Genetic Ancestry Tracing." Developing World Bioethics. 2003; 3(2) [PubMed]
Johnston J., Elliott C. "From the Guest Editors. " iii-iv.
Johnston J., Thomas M. "Summary: The Science of Genealogy by Genetics. " 103-108. [PubMed]
Johnson J. "Case Study: The Lemba." 109-111. [PubMed]
Parfitt T. "Constructing Black Jews: Genetics Tests and the Lemba— the 'Black Jews' of South Africa." 112-118. [PubMed]
Azoulay K.G. "Not an Innocent Pursuit: The Politics of a 'Jewish' Genetic Signature." 119-126. [PubMed]
Zoloth L. "Yearning for the Long Lost Home: The Lemba and the Jewish Narrative of Genetic Return." 127-132. [PubMed]
Dula A., Royal C., Miles S. "The Ethical and Social Implications of Exploring African American Genealogies." 133-141. [PubMed]
Baylis, F. "Black as Me: Narrative Identity." 142-150. [PubMed]
Rotimi, C.N. "Genetic Ancestry Tracing and the African Identity: A Double-Edged Sword?" 151-158. [PubMed]
Palsson, G., Helgason A. "Blondes, Lost and Found: Representations of Genes, Identity, and History." 159-169. [PubMed]
Sabir S. "Chimerical Categories: Caste, Race, and Genetics." 170-177. [PubMed]
Parfitt, T. "Place, Priestly Status and Purity: The Impact of Genetic Research on an Indian Jewish Community." 178-185. [PubMed]
Zoloth L. "Genetics and Religion." Encyclopedia of Religion, 2nd edition, vol 5. Lindsay Jones ed. New York: Macmillan Publishing, 2004. pp. 3247-3431.
Zoloth, L. "Genetics and Human Self-Understanding." Encyclopedia of Religion, 3rd edition, vol 2. Stephen Post ed. New York: Macmillan Publishing 2004. pp. 985-992.
Brodwin P. "Faultlines in 'Bioscience Ethics:' Lessons from the Human Genome Diversity Project." (Peer commentary on Eisen and Berry: The Absent Professor: Why We Don?t Teach Research Ethics and What to Do About It.) The American Journal of Bioethics. 2002; 2(4): 56-57. [PubMed]
Brodwin P, ed. "Genetic Knowledge and Collective Identity." Culture, Medicine and Psychiatry. 2005; 29(2):139-43. [PubMed]
Brodwin, P. "Genetic Knowledge and Collective Identity." 139-143(5).
Brodwin, P. "Bioethics in action' and human population genetics research." 145-178(34). [PubMed]
Kahn, S.M. "The Multiple Meaning of Jewish Genes." 179-192(14).
Parfitt, T. "Genetics, History, and Identity: The Case of the Bene Israel and the Lemba." 93-224(32). [PubMed]
Willaims, S.R. "Genetic Genealogy: The Woodson Family?s Experience." 225-252(28). [PubMed]
Brodwin, P. "Genetic Truth-Claims and Identity Politics in the Melungeon Community." In Race, Roots, and Relations: Native and African Americans. Terry Straus, ed. Chicago: Albatross Press, 2005. pp. 156-161.
EUNPU, Deborah "The Human Genome Project: a Public Forum"
Eunpu, D. and J. Weiss. "The Human Genome Project: A Public Forum. Report on a Model Conference for Genetics Professional and Consumers." Journal of Genetic Counseling. 1993; 2: 93-113.
FADER, Betsy "Visions for a Sustainable World: Science, Technology, and Social Responsibility"
Visions for a Sustainable World: A Conference on Science, Technology and Social Responsibility-- Conference Report. Washington, DC: Student Pugwash USA, June 1992.
Fader, B. "Ethics and the Use of Genetic Information" Tough Questions by Student Pugwash USA. Conference Report. Summer 1992: 7-11.
FANOS, Joanna "Perception of Carrier Status by Cystic Fibrosis Siblings"
Fanos, J.H. and J. Johnson. "Still Living with Cystic Fibrosis: The Well Sibling Revisited." Pediatric Pulmonology. September 1992: Supplement 8; 228-229.
Fanos, J.H. and L. Wiener. "Tomorrow's Survivors: Siblings of Human Immunodeficiency Virus Infected Children." Journal of Developmental and Behavioral Pediatrics. June 1994: Supplement 15(3); 43-48.
Fanos, J.H. and J. Johnson. "Perception of Carrier Status by Cystic Fibrosis Siblings." American Journal of Human Genetics. 1995: 57(2); 431-438.
Fanos, J.H. and J. Johnson. "Barriers to Carrier Testing for Adult Cystic Fibrosis Sibs: The Importance of Not Knowing." American Journal of Medical Genetics. 1995; 59: 85-91.
Fanos, J.H. Sibling Loss. Mahwah, New Jersey: Lawrence Erlbaum Associates, Inc; 1996. 182pp.
FARRELL, Philip "Pulmonary Benefits of Cystic Fibrosis Neonatal Screening"
Farrell M.H., Certain L.K., Farrell P.M. "Genetic counseling and other risk communication services by newborn screening programs." Arch Pediatr Adol Med. 2001; 155:120-126.
Kotwicki R.J., Condra L., Vermeulen L., Wolf T., Douglas J.A., Farrell P.M. "Assessing the quality of life in children with cystic fibrosis." Wisc Med J. 2001; 100(5):50-54.
Ciske, D.J., Haavisto, A., Laxova, A. et al. "Genetic counseling and neonatal screening for cystic fibrosis: An assessment of the communication process." Pediatrics. 2001; 107: 699-705.
FEALK, Elizabeth "Evaluation of the Human Genome Project Educational Kit"
Bachrach, E.R., Fusaro, M., Goodman, I.F. Evaluation of the Human Genome Project: Exploring our Molecular Selves Final Report. Goodman Research Group, Inc. Cambridge, MA. August 2003.
FINE, Beth "Genetic Counselors as Educators on Human Genome Issues"
Fine, B.A. "The Evolution of Nondirectiveness in Genetic Counseling and Implications of the Human Genome Project." In: Prescribing Our Future: Ethical Challenges in Genetic Counseling, eds. Bartels et al. Hawthorne, NY: Aldine de Gruyter, 1993. 101-107.
Fine, B. and M. Koblenz. "Humanizing Genetic Testing: Clinical Applications of New DNA Technologies." Northwestern University. April 1994. (Course manual and video)
FLETCHER, John "Preparing for the New Genetics: Education of Professionals"
The Virginia ELSI Project "The New Genetics: Education of Professionals". Colloquy I Participant Handbook. The University of Virginia. Charlottesville, VA. June 1995.
GENOMUVA: The Newsletter of the Virginia ELSI Project. Multiple issues 1:1 Summer 1995.
FOSTER, Morris "African American Community Review of Genetic Research"
Foster, M.W., Sharp, R.R. "Beyond race: towards a whole-genome perspective on human populations and genetic variation" Nature Reviews Genetics. October 2004; 5: 790-796.
FOSTER, Morris "ELSI Research in Two Native American Communities"
Foster, M.W., A.J. Eisenbraun and T.H. Carter. "Communal discourse as a supplement to informed consent for genetic research."nature genetics. November 1997; 17: 277-279.
Foster, M.W., D. Bernsten and T.H. Carter. "A Model Agreement for Genetic Research in Socially Identifiable Populations." American Journal of Human Genetics. 1998; 63: 696-702.
Foster, M.W. and W.L. Freeman. "Naming Names in Human Genetic Variation Research." Genome Research. 1998; 8: 755-757.
Foster M.W., Sharp R.R. "Race, Ethnicity, and Genomics: Social Classifications as Proxies of Biological Heterogeneity." Genome Research 12:844-850 (2002)
Sharp R.R., Foster M.W. "Community involvement in the ethical review of genetic research: Lessons from American Indian and Alaska native populations" Environ Health Persp. 110: 145-148 Suppl. 2 April 2002.
FOSTER, Morris "Using Third-Party Data in Pedigree and Subgroup Analyses"
Foster MW. Pharmacogenomics and the social construction of identity. In
Pharmacogenomics and Pharmacy Practice in Pharmacogenomics: Social, Ethical and
Clinical Dimensions. Mark A. Rothstein (ed.); New York: John Wiley & Sons, Inc. 2003.
Foster MW, Sharp RR. Genetic research with minority populations. In Race and
Research in Focus: Perspectives of Minority Participation in Health Research, Bettina M.
Beech and Maurine Goodman (eds.); American Public Health Association Monograph
Series. 2004.
Foster MW, Sharp RR. Will investments in biobanks, prospective cohorts, and
markers of common patterns of variation benefit other populations for drug response and
disease susceptibility gene discovery? The Pharmacogenomics Journal, 5:75-80. 2005. [PubMed]
Foster MW, Sharp RR. Will investments in large-scale prospective cohorts and
biobanks limit our ability to discover weaker, less common genetic and environmental
contributors to complex diseases? Environmental Health Perspectives, 113: 119-122. 2005. [PubMed]
Foster MW, Sharp RR. Ethical issues in medical sequencing research: implications of
genotype-phenotype studies for individuals and populations. Human Molecular Genetics,
15:R45-R49. 2006. [PubMed]
Foster MW, Mulvihill JJ, Sharp RR. Investments in cancer genomics: who benefits
and who decides? American Journal of Public Health, 96(11):1960-1964. 2006. [PubMed]
Foster MW, Royal CDM, Sharp RR. The routinization of genetics and genomics:
implications for ethical practices. Journal of Medical Ethics, 32(11):635-638. 2006. [PubMed]
Sharp RR, Foster MW. Grappling with groups: protecting collective interests in biomedical research. Journal of Medicine and Philosophy, 32(4):321-37. 2007 [PubMed]
Foster MW, Sharp RR. Share and share alike: deciding how to distribute the scientific and social benefits of genomic data. Nature Reviews Genetics, 8:633-638. 2007. [PubMed]
GARBER, Judy "A Predictive Testing Program for P53 Mutations in LFS"
Dana-Farber Cancer Institute Predictive Testing Program. Testing for a Cancer Susceptibility Gene. Produced by Reunion Productions, Inc. Watertown, Massachusetts: Dana Farber Cancer Institute, 1992. (Video length 14:55)
Hoskins, K.F., Stopler, J.E. Calzone K.A. et al. "Assessment and Counseling for Women with a Family History of Breast Cancer." JAMA. 1994; 273(7): 577-585.
Biesecker, B.B. and J.E. Garber. "Testing and counseling adults for heritable cancer risk." J. Natl. Cancer Inst. 1995; 17: 115-118.
Patenaude, A.F., K.A. Schneider, S.A. Kieffer et al. "Acceptance of invitations for p53 and BRCA1 predisposition testing: Factors influencing potential utilization of cancer genetic testing." Psycho-Oncology. 1996; 5: 241-250.
GARBER, Judy "Dissemination of a BRCA1 Predisposition Testing Program"
Patenaude, A.F. "The genetic testing of children for cancer susceptibility: ethical, legal, and social issues." Behavioral Sciences and the Law. Fall 1996; 14(4): 393-410.
Patenaude, A.F. "Psychosocial impact of familial cancers," in D. Malkin, Ed. Cancer: Inherited Tumors. Springer-Verlag. December 1998.
Emmons, K.M., K.J. Kalkbrenner, N. Klar et al. "Behavioral Risk Factors among Women Presenting for Genetic Testing." Cancer Epidemiology, Biomarkers & Prevention. January 2000; 9: 89-94.
Dorval, M., A.F. Patenaude, K.A. Schneider et al. "Anticipated Versus Actual Emotional Reactions to Disclosure of Results of Genetic Tests for Cancer Susceptibility: Findings From p53 and BRCA1 Testing Programs." Journal of Clinical Oncology. May 2000; 18(10): 2135-2142.
GARTE, Seymour "Implications of Genomics Research on Racial Definition"
Garte, Seymour. "The Racial Genetics Paradox in Biomedical Research and Public Health." Public Health Reports. 2002; 117: 421-5.
Garte S. "Locus-Specific Genetic Diversity Between Human Populations: An Analysis of the Literature." American Journal of Human Biology. 2003; 15: 1-10.
Garte, Seymour. "Locus specific genetic diversity between human populations: An analysis of the literature." Amer. Jour. of Human Biology. 2003; 15: 814-823.
Taioli, E., Pedotti, P., Garte, S. "Importance of allele frequency estimates in epidemiological studies." Reviews in Mutation Research. 2004; 567: 63-70.
GELLER, Gail "A Model Informed Consent Process for BRCA1 Testing"
Geller, G., B.A. Bernhardt, K.A. Helzlsouer et al. "Informed consent and BRCA1 testing." Nature Genetics. 1995; 11: 364.
Geller, G., M. Strauss, B.A. Bernhardt, and N.A. Holtzman. "Decoding informed consent: Insights from women regarding genetic testing for breast cancer susceptibility." Hastings Center Report. 1997; 27(2): 28-33.
Bernhardt, B.A., G. Geller, M. Strauss et al. "Towards a model informed consent process: A qualitative assessment of women's attitudes about genetic testing for breast cancer risk. Journal of Genetic Counseling. 1997; 6(2): 207-222.
Geller G., J.R. Botkin, M.J. Green et al. "Genetic testing for susceptibility to adult-onset cancer: The process and content of informed consent." JAMA. 1997; 277: 1467-1474. (Joint CGSC publication)
Geller G., B.A. Bernhard, T. Doksum et al. "Decision-making about breast cancer susceptibility testing: How similar are the attitudes of physicians, nurse practitioners and at-risk women?" J Clin Onc. 1998; 16: 2868-2876.
James C.A., G. Geller, B.A. Bernhardt et al. "Are practicing and future physicians prepared to obtain informed consent? The case of genetic testing for susceptibility to breast cancer." Community Genetics. 1998; 1: 203-212.
Eisinger F., G. Geller, W.F. Burke, and N.A. Holtzman. "Cultural basis for differences between American and French clinical recommendations for women at increased risk of breast/ovarian cancer." Lancet. 1999; 353: 919-920.
Geller, G., T. Doksum, B.A. Bernhardt and S.A. Metz. "Participation in Breast Cancer Susceptibility Testing Protocols: Influence of Recruitment Source, Altruism, and Family Involvement on Women's Decisions." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 377-383. [Pubmed]
Bernhardt B.A., G. Geller, T. Doksum, and S.A. Metz. "How effective are nurses and genetic counselors at conducting the informed consent process for breast cancer susceptibility testing?" Oncology Nursing Forum. January 2000; 27(1): 33-39.
Tambor E.S., Bernhardt B.A., Geller G.I., Helzlsouer K.J., Doksum T., Holtzman N.A. "Should women at increased risk for breast and ovarian cancer be randomized to prophylactic surgery?: An ethical and empirical assessment." J Women's Health & Gender-Based Med. 2000; 9: 223-233.
GELLER, Gail "Minors At-Risk of Future Disease: Their Role in Research"
Geller G. "Commentary: Weighing benefits and burdens rather than competence." BMJ. 1999; 318: 1067.
Geller G., Tambor E.S., Bernhardt B.A., Wissow L.S., Fraser G. "Mothers and daughters from breast cancer families: A qualitative study of their perceptions of the risks and benefits associated with minors' participation in genetic susceptibility research." JAMWA. 2000; 55: 280-284.
Geller G., Tambor E.S., Bernhardt B.A., Fraser G., Wissow L.G. "Informed consent for enrolling minors in genetic susceptibility research: A qualitative study of at-risk children's and parents' views about children's role in decision making." Journal of Adolescent Health. 2003; 32: 260-271.
Bernhardt B.A., Tambor E.S., Fraser G., Wissow L.S., Geller G. "Parents' and children's attitudes toward the enrollment of minors in genetic susceptibility research: Implications for informed consent." American Journal of Medical Genetics. 2003; 116A: 315-323.
Broome M.E., Kodish R., Geller G., Siminoff L. "Children in research: New perspectives and practices for informed consent." IRB: Ethics & Human Research Supplement. 2003; 25: S20-S25.
GELLER, Gail "Prenatal Genetic Testing -- Provider-Patient Communication"
Bernhardt, B.A., G. Geller, T. Doksum et al. "Prenatal Genetic Testing: Content of Discussions Between Obstetric Providers and Pregnant Women. Obstetrics and Gynecology. May 1998; 91(5 Part I): 648-655.
Roter D.L., G. Geller, B.A. Bernhardt, S.M. Larson, T. Doksum. "Effects of obstetrician gender on communication and patient satisfaction." Obstetrics and Gynecology. 1999; 93: 635-641.
Bernhardt, B.A., Mastromariano-Haunstetter, C., Roter, D., Geller, G. "How do obstetric providers discuss referrals for prenatal genetic counseling?" J Genet Couns. 2004; 14(2):109-17. [PubMed]
GELLER, Gail "Publicizing Genetic Discoveries: The Impact of the Media"
Tambor E.S., Bernhardt B.A., Rodgers J. et al. "Mapping the human genome: An assessment of media coverage and public reaction." Genetics in Medicine. 2002 4(1): 31-36.
Geller G., Bernhardt B.A., Holtzman, N.A. "The media and public reaction to genetic research." JAMA. 2002; 287: 773.
Geller G., Tambor E.S., Bernhardt B.A., Rodgers J., Holtzman N.A. "Houseofficers' reactions to media coverage about the sequencing of the human genome." Soc Sci Med 2003; 56: 2211-2220.
Mountcastle-Shah E., Tambor E., Bernhardt B.A., Geller G. et al. "Assessing mass media reporting of disease-related genetic discoveries: Development of an instrument and initial fundings." Science Communication. 2003; 24: 458-478.
Geller, G., Bernhardt, B.A., Rodgers, J.E., Holtzman, N.A. "Scientists' and science writers' experiences reporting genetic discoveries: Toward an ethic of trust in science journalism." Genetics in Medicine. 2005: 7(3); 198-205. [PubMed]
Holtzman, N.A., Bernhardt, B.A., Mountcastle-Shah, E., Rodgers, J.E., Tambor, E., Geller, G. "The quality of media reports of discoveries related to human genetic diseases." Community Genetics . 2005; 8(3):133-44. [PubMed]
GERT, Bernard "Ethical and Legal Studies Relating to the Program to Map and Sequence The Human Genome"
Gert, B., E.M. Berger, G.F. Cahill, Jr. et al. Morality and the New Genetics: A Guide for Students and Health Care Providers. Boston: Jones and Bartlett, 1996. 242p.
Gert B. "Ethics and Research Subject Counseling," in Genes, Ethics, and Cancer In The Work Environment, Sheldon W. Samuels and Arthur C., Eds. Upton, OEM Press and Ramazzini Institute, 1998, pp. 25-31.
Gert B. "Genetic Engineering: Is It Morally Acceptable?" USA Today, 127(2644), January 1999, pp. 28-30.
Gert B. "Die Auswirkungen des genetischen Wissens ouf unsere Gesundheits- und Krankheitsknozeptionen," Zukunftsentwürfe: Ideen für eine Kultur der Veräbderung, edited by Jörn Rüsen, Hanna Leitgeb, and Norbert Jegelka, Campus Verlag, 1999, pp. 257- 269.
Gert B. "Morality and Human Genetic Engineering," Jahrbuch für Recht und Ethik - Annual Review of Law and Ethics, Der analysierte Mensch - The Human Analyzed, edited by B. Sharon Byrd, Joachim Hruschka, Jan C, Joerden, Duncker & Humblot, 1999, pp. 41- 52.
Berger, E.M. and B. Gert. "Genetic Disorders and the Ethical Status of Germ-Line Gene Therapy." Journal of Medicine and Philosophy. December 16, 1991: 16(6); 667-683. (was reprinted in Medical Ethics, edited by Michael Boylan, 2000.)
Gert B. "Thinking about Huxley's Brave New World: Was it Wrong to Create a Genetic Hierarchical Society? Is it wrong to Prevent One?" in Etica Della Ricerca Biologica. edited by Cosimo Marco Mazzoni (Leo S. Olschki, 2000), pp. 125-133.
Gert B. "Genetic Engineering," Encyclopedia of Ethics, 2001, Second Edition, Edited by Lawrence Becker and Charlotte Becker. Volume I, pp. 602-606. 2001.
GLANZ, Karen "Colon Cancer Risk Counseling for At-Risk Relatives"
Glanz K., Grove J., Le Marchand L., et al. "Underreporting of family history of colon cancer: Correlates and implications" Cancer Epidem Biomar. July 1999; 8(7): 635-639.
Glanz K, Steffen AD, Taglialatela1 LA. Effects of Colon Cancer Risk Counseling for First-Degree Relatives. Cancer Epidemiol Biomarkers Prev, 16(7):1485-1491. 2007. [PubMed]
GLANZ, Karen "Genetic Testing for Colon Cancer in Multiethnic Hawaii"
Glanz, K., J. Grove, C. Lerman et al. "Correlates of Intentions to Obtain Genetic Counseling and Colorectal Cancer Gene Testing Among At-Risk Relatives from Three Ethnic Groups." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 329-336. [Pubmed]
GOSTIN, Lawrence "Genetics Legislation: Syntax, Science and Policy"
Gostin, L.O., Hodge J.G. "Genetic privacy and the law: An end to genetics exceptionalism." ABA Jurimetrics. 1999; 40: 21-58.
Goston, L.O., Hodge, J.G., Calvo, C.M. "Genetics Policy and Law: A Report for Policymakers." National Conference of State Legislatures. 2001; 1-101.
Calvo, C.M, Johnson, A., eds. "Genetics Policy Report: Employment Issues." National Conference of State Legislatures. 2001; 1-38.
Hodge, J.G., Harris, M.E. "International genetics research and issues of group privacy." Journal of Biolaw and Business. 2001; Special Supp.: 15-21.
Johnson, A., Calvo, C.M., eds. "Genetics Policy Report: Privacy." National Conference of State Legislatures. 2002; 1-46.
King, M.P. "State roles in health: A snapshort for state legislatures." National Conference of State Legislatures. 2002; 1-24.
GRABER, Glenn "Societal Impact of Human Genetic Engineering"
Graber, G.; J. Collmann; and S. Dombrowski. "Human Gene Therapy: A Handbook for Community Discussion." Knoxville: University of Tennessee, 1993. (Accompanying video)
GREEN, Michael "Computer Education for Breast Cancer Genetic Testing"
Green, M.J. and N. Fost. "An Interactive Computer Program For Educating and Counseling Patients About Genetic Susceptibility to Breast Cancer." Journal of Cancer Education. 1997; 12(4): 204-208.
Green, M.J. and N. Fost. "Issues in Genetic Testing: Who Should Provide Genetic Education Prior to Gene Testing? Computers and Other Methods for Improving Patient Understanding." Genetic Testing. 1997; 1(2): 131-136.
Green, M.J. and N. Fost. Breast Cancer Risk & Genetic Testing. CD-ROM. Wisconsin Alumni Research Foundation. 1998.
B.J. Baty. "Counseling by Computer: Breast Cancer Risk and Genetic Testing." Software Review in American Journal of Medical Genetics. 1999; 86(1): 93-94.
J.P. Crowe. "Counseling by Computer: Breast Cancer Risk and Genetic Testing." CD-ROM Review in Journal of Women's Health. 1999; 8(1): 25-26.
M.K. Dabney and K. Huelsman. "Counseling by Computer: Breast Cancer Risk and Genetic Testing." Software Review in Genetic Testing 2000; 4(1): 43-44.
Green, M.J. "Commentary: Computers and Genetic Counseling Time for a Dialogue?" Journal of Genetic Counseling 2000; 9(4): 359-361.
Green M.J., Biesecker B.B., McInerney A.M., Mauger D., Fost N. "An Interactive Computer Program Can Effectively Educate Patients About Genetic Testing for Breast Cancer Susceptibility." American Journal of Medical Genetics. 2001; 103:16-23.
Green M.J., McInerney A.M., Biesecker B.B., Fost N. "Education About Genetic Testing for Breast Cancer Susceptibility: Patient Preferences for a Computer Program or Genetic Counselor." American Journal of Medical Genetics. 2001; 103:24-31.
Eng, C., Iglehart, D. "Decision Aids From Genetics to Treatment of Breast Cancer: Long-term Clinical Utility or Temporary Solution?." JAMA. July 28, 2004; 292(4): 496-498 (Reprinted).
Green, M.J., Baker, M.W., Harper, G.R., et al. "Effect of a Computer-Based Decision Aid on Knowledge, Perceptions, and Intentions About Genetic Testing for Breast Cancer Susceptibility: A Randomized Controlled Trial." JAMA. July 28, 2004; 292(4): 442-452 (Reprinted).
GREEN, Robert "Genetic Risk Assessment and Counseling for Alzheimer's Disease"
Green R.C., Cupples L.A., Go R., et.al. "Risk of Dementia Among White and African American Relatives of Patients With Alzheimer Disease." JAMA. January 2002; 287(3): 329-336.
Cupples, L.A., Farrer, L.A., Sadovnick, A.D. et al. "Estimating risk curves for first-degree relatives of patients with Alzheimer's disease: The REVEAL study." Genetics IN Medicine. July/August 2004; 6(4): 192-196.
Roberts, J.S., Barber, M., Brown, T.M. et al. "Who seeks genetic susceptibility testing for Alzheimer's disease? Findings from a multisite,randomized clinical trial." Genetics IN Medicine. July/August 2004; 6(4): 197-203.
LaRusse S, Roberts JS, Marteau TM, et al. "Genetic susceptibility testing versus family history-based risk assessment: Impact on perceived risk of Alzheimer disease." Genetics in Medicine. January 2005; 7(1):48-53.
GREEN, Ronald "Implications of Genome Research: A Model College Course"
Green R.M. Implications of Genetic Research: A Summer Institute Web site. http://www.dartmouth.edu/~ethics/smi.html
GREGG, Robin "Genetics, Ethics, and Choice: A Qualitative Study"
Gregg, R. "'Choice' as a Double-Edged Sword: Information, Guilt and Mother-Blaming in a High-Tech Age." Women and Health. 1993: 20(3); 53-73.
Gregg, R. "Explorations of Pregnancy and Choice in a High-Tech Age." In: Qualitative Studies in Social Work Research, Catherine Kohler Riessman, Ed. Thousand Oaks, California: Sage Publications, Inc., 1994.
Gregg, R. Pregnancy in a High-Tech Age: Paradoxes of Choice. New York: New York University Press; 1995.
GRITZ, Ellen "Psychosocial Aspects of Genetic Testing for HNPCC"
Vernon, S.W., E.R. Gritz, S.K. Peterson et al. "Correlates of Psychologic Distress in Colorectal Cancer Patients Undergoing Genetic Testing for Hereditary Colon Cancer." Health Psychology. 1997; 16: 73-86.
Vernon, S.W., E.R. Gritz, S.K. Peterson et al. "Intention to Learn Results of Genetic Testing for Hereditary Colon Cancer." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 353-360. [Pubmed]
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]
Lynch, P.M. "Clinical Challenges in Management of Familial Adenomatous Polyposis and Hereditary Nonpolyposis Colorectal Cancer." Cancer Supplement. December 1999: 86(11); 2533-2539.
Peterson, S.K. and S.W. Vernon. "A Review of Patient and Physician Adherence to Colorectal Cancer Screening Guideline." Seminars in Colon & Rectal Surgery. March 2000: 11(1); 58-72.
Gritz, E.R., S.W. Vernon, K. Peterson et al. "Distress in the Cancer Patient and its Association with Genetic Testing and Counseling for Hereditary Non-Polyposis Colon Cancer." Cancer Research, Therapy and Control. (In press).
GRODY, Wayne "Cystic Fibrosis Mutation Screening and Counseling"
Grody, W. Cystic Fibrosis. (Education videotape on cystic fibrosis testing--English/Spanish). Los Angeles: The UCLA Cystic Fibrosis Project, 1992.
Grody, W. et al. "PCR-Based Cystic Fibrosis (CF) Carrier Screening in a First-Year Medical Student Biochemistry Laboratory." American Journal of Human Genetics. 1993; 53: 1352-1355.
Tatsugawa, Z., M. Fox, C. Fang, J.M. Novak, R. Cantor, B.F. Crandall and W.W. Grody. "Education and Testing Strategy for Large-Scale Cystic Fibrosis Carrier Screening." Journal of Genetic Counseling. 1994: 3(4); 279-289.
Grody, W. et al. "PCR-Based Screening for Cystic Fibrosis Carrier Mutations in an Ethnically Diverse Pregnant Population." American Journal of Human Genetics. 1997; 60: 935-947.
HADDOW, Paula "Update and Dramatization of a Genetics Curriculum"
"Chances' Choices": Second Edition. Scarborough, ME: Foundation for Blood Research; 1997. 208p.
HALL, Mark "Effects of Restricting Insurers' Use of Genetic Info"
Hall, M.A. "Restricting Insurers' Use of Genetic Information: A Guide to Public Policy." N. Am. Actuarial Journal. January 1999; 3(1).
Hall, M.A. "Legal Rules and Industry Norms: The Impact of Laws Restricting Health Insurers' Use of Genetic Information." Jurimetrics. 1999; 40: 93-122.
Hall, M.A. and S.S. Rich. "Laws Restricting Health Insurers' Use of Genetic Information: Impact on Genetic Discrimination." Am. J. Hum. Genet. January 2000: 66: 293-307.
Hall, M.A. "When Genes are Decoded, Who Should See the Results." New York Times. February 29, 2000, at D7.
Hall, M.A. and S.S. Rich. "Patients' fear of genetic discrimination of health insurers: The impact of legal protections." Genetics in Medicine. August 2000; 2(4):214 221.
Mark A. Hall and Stephen S. Rich, "Genetic Privacy Laws and Patients' Fear of Discrimination by Health Insurers: The View from Genetic Counselors." Journal of Law, Medicine & Ethics. 2001; 28(3): 245-57.
HEATH, Deborah "Mapping Genetic Knowledge: An Anthropological Study"
Heath D. (1998) "Locating Genetic Knowledge: Picturing Marfan Syndrome and Its Traveling Constituencies." Science, Technology and Human Values. 23:1.
Heath D. (1998) "Bodies, Antibodies and Modest Interventions: Works of Art in the Age of Cyborgian Reproduction." In G. Downey and J. Dumit, eds. Cyborgs and Citadels: Anthropological Interventions in the Borderlands of Technoscience. Santa Fe, NM: School of American Research.
Heath D., Ley B., Koch E., Montoya M. (1999) "Nodes and Queries: Linding Locations in Networked Fields of Inquiry." In N Wakeford, Ed. Virtual Methodologies, special issues of American Behavioral Scientist. 43:3.
Heath D., Rapp R., Taussig K.S. (2002) Genealogical Dis-Ease: Where Hereditary Abnormality Biomedical Explanation, and Family Responsibility Meet. In S. Franklin and S. McKinnon, eds. Relative Values: Reconfiguring Kinship Studies. Raleigh, NC: Duke University Press.
Goodman A., Heath D., Lindee S., Eds. (2003) Genetic Nature/Culture: Anthropology and Science Across the Two Culture Divide. Berkeley CA: University of California Press.
Taussig K.S., Rapp R., Health D. (2003) "Flexible Eugenics." In A. Goodman, D. Health and S. Lindee, eds. Genetic Nature/Culture: Anthropology and Science Across the Two Culture Divide. Berkeley CA: University of California Press.
HENDERSON, Gail "Center for Genomics and Society"
Bailey D. Newborn screening for intellectual disability: Past, present, and future. LM Glidden (Ed.), International Review of Research in Mental Retardation, Volume 36. San Diego: Elsevier. 2007
Dressler LG. 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]
King NMP. The ethics of genetic testing: Is more always better? North Carolina Medical Journal, 68(2):112-4. 2007. [PubMed]
Van Riper M. Families of children with Down syndrome: Responding to a "change of plans" with resilience. Journal of Pediatric Nursing, 22:116-128. 2007 [PubMed]
Henderson GE, Mahoney D, Corneli A, Nelson DK, Mwansambo C. Applying research ethics guidelines: The view from a sub-Saharan research ethics committee. Journal of Empirical Research on Human Research Ethics, 2(2):41-48. 2007.
Henderson GE, Churchill LR, Davis AM, et al. Clinical trials and medical care: Defining the therapeutic misconception. Public Library of Science- Medicine, 4(11):1735-1738. 2007. [PubMed]
Skinner D, Weisner T. Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13:302-312. [PubMed]
Landsman G, Van Riper M. Family, household, and social context of bringing up children with special health care needs. In E.J. Sobo, K. Dennis, & P.S. Kurtin (Eds.), Optimizing care for children with special health care needs in their early years. Maryland: Paul H. Brookes Publishing, Inc. 2007.
Walker RL, Ivanhoe PJ. (Eds.) Working virtue: Virtue ethics and contemporary moral problems. Oxford, UK: Oxford University Press. 2007.
Evans JP. Healthcare in the age of genetic medicine. JAMA, 298(22):2670-2672. 2007. [PubMed]
Van Riper M. Genetics. In D. Lowdermilk & S. Perry (Eds.), Maternity and women's health care (9th ed.). Philadelphia: Elsevier Science. 2007
Susswein L, Skrzynia C, Lange L, Booker J, Graham III M, Evans JP. Increased uptake of BRCA1/2 genetic testing among African American women with a recent diagnosis of breast cancer. Journal of Clinical Oncology, 26:32-36. 2008. [PubMed]
Hayes D, Thor A, Dressler L, Weaver D, Edgerton S, Cowan D, Broadwater G, Goldstein L, Martino S, Ingle J, Henderson IC, Norton L, Winer E, Hudis C, Ellis M, Berry D. HER2 and response to paclitaxel in node-positive breast cancer. New England Journal of Medicine, 357(15):1496-1506. 2008. [PubMed]
Kaufman JS, Cooper RS. Race in epidemiology: new tools, old problems. Annals of Epidemiology, 18(2):119-123. 2008. [PubMed]
Bolnick DA, Fullwiley D, Duster T, Cooper RS, Fujimura JH, Kahn J, Kaufman JS, Marks J, Morning A, Nelson A, Ossorio P, Reardon J, Reverby SM, TallBear K. The science and business of genetic ancestry testing. Science, 318:399-400. 2007. [PubMed]
Corbie-Smith G, Blumenthal C, Henderson GE, Garrett J, Bussey-Jones J, Moloney ME, Sandler RS, Williams Lloyd S, Dorrance J, Darter J. Studying genetic research participants: Lessons from the ?Learning About Research in North Carolina? study. Cancer Epidemiology, Biomarkers & Prevention. In Press.
Cuskelly M, Hauser-Cram P, Van Riper M. Families of children with Down syndrome: What we know and what we need to know. Down Syndrome Research and Practice, In Press.
Easter M, Henderson G, Davis A, Churchill L, King N. The many meanings of care in clinical research. Reprinted in R. DeVries L, Turner K, Orfali & C. Bosk (Eds.), The view from here: Social science and bioethics, Oxford, UK: Blackwell Publishing Ltd. In Press.
Bailey D, Armstrong D, Kemper A, Skinner D, Warren S. Supporting family adaptation to pre-symptomatic and "untreatable" conditions in an era of expanded newborn screening. Journal of Pediatric Psychology. In Press.
Kaufman JS. Epidemiologic analysis of racial/ethnic disparities: Some fundamental issues and a cautionary example. Social Science and Medicine, In Press.
Wheeler A, Skinner D, Bailey DB. Perceived quality of life in mothers of children with fragile X syndrome. American Journal on Mental Retardation, In Press.
Whitmarsh IA. Biomedical ambiguity: Race, asthma, and the contested meaning of genetic research in the Caribbean. Cornell University Press. In Press.
Henderson GE. Introducing social and ethical perspectives on genetics research to sociologists engaged in gene environment research. Sociological Methods and Research, In Press.
Henderson GE, Garrett J, Bussey-Jones J, Moloney ME, Blumenthal C, Corbie-Smith G. Great expectations: Views of genetic research participants regarding current and future genetic studies. Genetics in Medicine, In Press.
Skinner D. Interdisciplinary research. In L. Given (Ed.), Sage Encyclopedia of Qualitative Research Methods. Sage Publications. In Press.
HENDERSON, Gail "Social Construction of Benefit in Gene Transfer Research"
Henderson GE, King NMP. IRB: Ethics and Human Research, vol. 23, no. 2 (2001): 13-15.
Churchill LR. "Narrative Ethics, Gene Stories and the Hermeneutics of Consent Forms," in Stories Matter: The Role of Narrative in Medical Ethics, edited by Rita Charon and Martha Montello, (New York: Routledge, 2002): 183-195.
Henderson, GE , King NMP. "Perceived Benefits of Participation in Gene Transfer Research." HemAware, vol. 7, no. 5 (2002): 73-75.
King NMP. "RAC Oversight of Gene Transfer Research: A Model Worth
Extending?" Journal of Law, Medicine & Ethics,, vol. 30, no. 3 (2002):
381-389.
Davis AM, Hull SC , Grady C. et al. "The Invisible Hand in Clinical
Research: The Study Coordinator's Critical Role in Human Subjects
Protection." Journal of Law, Medicine & Ethics, vol. 30, no. 3 (Fall
2002): 411-419.
Churchill LR., Nelson DK, Henderson GE et al. "Assessing Benefits in
Clinical Research: Why Diversity in Benefit Assessment Can Be Risky."
IRB: Ethics and Human Research, vol. 25, no. 3 (2003): 1-8.
Easter MM, Davis AM, Henderson GE. "Confidentiality: More than a
Linkage File and a Locked Drawer." IRB: Ethics and Human Research, vol.
26, no. 2 (2004): 13-17.
Henderson GE, Davis AM , King NMP et al. "Uncertain Benefit:
Investigators' Views and Communications in Early Phase Gene Transfer
Trials." Molecular Therapy, vol. 10, no. 2 (August, 2004): 225-231.
King NMP, Henderson GE , Churchill LR et al. "Consent Forms and the Therapeutic Misconception: The Example of Gene Transfer Research." IRB: Ethics and Human Research [forthcoming: January-February 2005 issue].
Henderson GE, Davis AM , King NMP. "Vulnerability to Influence - A Two-Way Street." American Journal of Bioethics [forthcoming].
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]
HILGARTNER, Stephen "Organizing the HGI: Social Impact and Technology Design"
Hilgartner, S. and S.I. Brandt-Rauf. "Data Access, Ownership, and Control: Toward Empirical Studies of Access Practices." Knowledge: Creation, Diffusion, Utilization. June 1994: 15(4): 355-372.
Hilgartner, S. "The Human Genome Project." In: Handbook of Science and Technology Studies, eds. S. Jasanoff et al. Thousands Oaks, California: Sage Publications, Inc.; 1995.
Hilgartner, S. "Biomolecular Databases: New Communication Regimes for Biology?" Science Communication. December 1995: 17(2): 240-263.
Hilgartner, S. "Access to Data and Intellectual Property: Scientific Exchange in Genome Research." Pp. 28-39 in National Academy of Sciences, Intellectual Property and Research Tools in Molecular Biology: Report of a Workshop. National Academy Press, 1997.
Hilgartner, S. "Data Access Policy in Genome Research." In : Private Science, A. Thackray, Ed. University of Pennsylvania Press, April 1998. 304p.
Stemerding D. and S. Hilgartner. "Means of Coordination in Making Biological Science: On the Mapping of Plants, Animals, and Genes." In: Getting New Technologies Together : Studies in Making Sociotechnical Order (De Gruyter Studies in Organization , No 82), eds. C. Disco and B. van de Meulen. Hawthorne, NY: Aldine de Gruyter, November 1998.
HOFFMAN, Lance "2nd Annual Conference on Computers, Freedom, and Privacy"
Hoffman, L., Ed. Proceedings of the Second Conference on Computers, Freedom, and Privacy. New York: Association for Computing Machinery, Inc., 1993.
HOLMES, Helen "Impact of the HGI on Society: A Women's Studies Approach"
Mahowald, M. "Feminist Fashion in Genetics: The WAGICS Workshop in Zanesville." Newsletter of the Network on Feminist Approaches to Bioethics. July 1996; 4(1): 3.
Johnson, A. "Ethics and Genetics." VHL Family Forum, September 1996; 4(3): 10.
Kenen, R. "Women and Genetics in Contemporary Society (WAGICS) Workshop." National Women's Health Network News (forthcoming)
HOLTZMAN, Neil "Ethical and Legal Issues in the Diffusion of Genetic Tests"
Geller, G. and N.A. Holtzman. "Implications of the Human Genome Initiative for the Primary Care Physician." Bioethics. 1991: 5(4); 318-325.
Holtzman, N.A. "The Diffusion of New Genetic Tests for Predicting Future Disease." FASEB Journal. 1992: 6; 2806-2812.
Holtzman, N.A. "Primary Care Physicians as Providers of Frontline Genetic Services." Fetal Diagnosis and Therapy. 1993: 8(supplement 1); 213-219.
Geller, G., E.S. Tambor, G.A. Chase et al. "Measuring Physicians' Tolerance for Ambiguity and its Relationship to Their Reported Practices Regarding Genetic Testing." Medical Care. 1993: 31(11); 989-1001.
Geller, G., E.S. Tambor, B.A. Bernhardt et al. "Physicians' Attitudes toward Disclosure of Genetic Information to Third Parties." The Journal of Law, Medicine & Ethics. Summer 1993: 21(2); 238-240.
Hofman, K.J. et al. "Physicians' Knowledge of Genetics and Genetic Tests." Academic Medicine. August 1993: 68(8); 625-632.
Geller, G., E.S. Tambor, G.A. Chase et al. "Incorporation of Genetics in Primary Care Practice: Will Physicians Do the Counseling and Will They Be Directive?" Archive of Family Medicine. November 1993: 2; 1119-1125.
Tambor, E.S., G.A. Chase, R.R. Faden et al. "Improving Response Rates through Incentive and Follow-up: The Effect on a Survey of Physicians' Knowledge of Genetics." American Journal of Public Health. November 1993: 83(11); 1599-1603.
Holtzman, N.A. "Benefits and Risks of Emerging Genetic Technologies: The Need for Regulation." Clinical Chemistry. 1994: 40(8); 1652-1656.
Holtzman, N.A. "Discovery, transfer, and diffusion of technologies for the detection of genetic disorders: Policy implications." International Journal of Technology Assessment in Health Care. 1994; 10: 562-572.
Geller, G. and N.A. Holtzman. "A Qualitative Assessment of Primary Care Physicians' Perceptions About the Ethical and Social Implications of Offering Genetic Testing." Qualitative Health Research. February 1995: 5(1); 97-116.
Geller, G., B.A. Bernhardt, K. Helzlsouer et al. "Informed Consent and BRCA1 Testing." (Correspondence) Nature Genetics. December 1995; 11: 364.
Holtzman N.A. "Are we ready to screen for inherited susceptibility to cancer?" Oncology. 1996; 10: 57-64.
Holtzman N.A. "Medical and ethical issues in genetic screening -- An academic view." Environmental Health Perspectives. 1996; 104(5): 987-990.
Holtzman N.A., Andrews L. "Ethical and legal issues in genetic epidemiology." Epidemiologic Reviews. 1997; 19: 163-174.
HOLTZMAN, Neil "Ethical and Policy Issues in Cystic Fibrosis Screening"
Cystic Fibrosis Carrier Testing: The Choice is Yours. (An educational videotape on cystic fibrosis testing). Baltimore: The Johns Hopkins University, 1992.
Faden, R.R. et al. "Attitudes of Physicians and Genetics Professionals Toward Cystic Fibrosis Carrier Screening." American Journal of Medical Genetics. 1994: 50(1); 1-11.
Myers, M.F., B.A. Bernhardt, E.S. Tambor and N.A. Holtzman. "Involving Consumers in the Development of an Educational Program for Cystic Fibrosis Carrier Screening." American Journal of Human Genetics. 1994: 54(4); 719-726.
Tambor, E.S., B.A. Bernhardt, G.A. Chase et al. "Offering Cystic Fibrosis Carrier Screening to an HMO Population: Factors Associated with Utilization." American Journal of Human Genetics. 1994: 55(4); 626-637.
Bernhardt, B.A., G.A. Chase, R.R. Faden et al. "Educating Patients About Cystic Fibrosis Carrier Screening in a Primary Care Setting." Archives of Family Medicine. 1996; 5: 336-340.
HUDSON, Kathy "National Black Leadership Conference on Genetics"
IMAGN! Increasing Minority Awareness of Genetics Now! Conference Report. October 2004. Genetics & Public Policy Center. Johns Hopkins University.
HUGHES-HALBERT, Chanita "Comparing Models of Pre-Test Education for BRCA1 Testing"
Lerman, C., B. Biesecker, J.L. Benkendorf et al. "Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing." Journal of National Cancer Institute. 1997; 89: 148-57.
Hughes, C., A. Gomez-Caminero, J. Benkendorf et al. "Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk." Patient Education and Counseling. 1997; 32: 51-62.
Lerman C. "Psychological aspects of genetic testing: Introduction to the Special Issues." Health Psychology. 1997; 16: 3-7.
Lerman, C. "Translational Behavioral Research in Cancer Genetics." Preventive Medicine. 1997; 26: S65-S69.
Benkendorf, J.L., J.E. Reutenauer, C.A. Hughes et al. "Patients Attitudes About Autonomy and Confidentiality in Genetic Testing for Breast-Ovarian Cancer Susceptibility." American Journal of Medical Genetics. December 1997; 73: 296-303.
Audrain, J., M.D. Schwartz, C. Lerman et al. "Psychological distress in women seeking genetic counseling for breast-ovarian cancer risk: The contributions of personality and appraisal." Annals of Behavioral Medicine. Fall 1998; 19(4): 370-7.
Croyle R., Lerman C. "Risk communication in genetic testing for cancer susceptibility." Journal of the National Cancer Institute Monographs, 1999; 25: 59-66.
Lerman, C., C. Hughes, J.L. Benkendorf et al. "Racial Differences in Testing Motivation and Psychological Distress following Pretest Education for BRCA1 Gene Testing." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 361-367. [Pubmed]
Glanz, K., J. Grove, C. Lerman et al. "Correlates of Intentions to Obtain Genetic Counseling and Colorectal Cancer Gene Testing Among At-Risk Relatives from Three Ethnic Groups." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 329-336. [Pubmed]
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.
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.
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
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 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.
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.
Kozma, C. and E.V. Lapham. "Nature: Understanding Genetic and Hereditary Influence on Brain Function." Lesson 3 in Nueroscience & Occupation: Links to Practice. C.B. Royeen, Ed.
Lapham E.V., Kozma C., Weiss J.O., Benkendorf J.L., Wilson M.A. "The Gap Between Practice and Genetics Education of Health Professionals: HuGEM Survey Results." Genetics in Medicine. July/August 2000; 2(4): 1-6.
LEA, Dale "A Practice-Based Genetics Curriculum for Nurse Educators"
Lea, Dale and J. Jenkins. Genetics in Clinical Practice: New Dimensions for Nursing and Health Care. Boston: Jones & Bartlett Publishers, 1998. 352p.
LEE, Sandra "Distributive Justice in Human Genetic Variation Research"
Lee, S.S. "Paradoxes of Difference." Book Review/Science in the Media. PLOS Biology. 2004; 2(9): e263. [PubMed Central]
Lee, S.S. "Personalized medicine and pharmacogenomics: ethical and social challenges." Personalized Med. 2005; 2(1): 29?35.
Lee, S.S. "Peronalized medicine and pharmacogenomics: ethical and social challenges." Ethical Perspective. Personalized Med. 2005; 2(1); 29-35.
Lee SS-J. Identifying 'Race' in the New Genetics: Bio-Banks of a Kind. Patterns of Prejudice. Ed. S.L. Gilman. 40(4,5): 443-460. 2006.
Lee SS-J. MEDICINE: The Politics of Hope--Dreaming in a Genomic Age. Science, 313(5795):1889-1890. 2006.
Lee SS-J. The Ethical Implications of Stratifying by Race in Pharmacogenomics. Clinical Therapeutics and Pharmacology 81(1):122-125. 2007. [PubMed]
Koenig B, Lee SS-J, Richardson S. Introduction. In Revisiting Race in a Genomic Age. Eds. B Koenig, SS-J Lee and S Richardson. New Brunswick: Rutgers University Press. [In Press]
Lee SS-J. Racial Realism: Reframing Disparity into Difference. In Revisiting Race in a Genomic Age. Eds. B Koenig, SS-J Lee and S Richardson. New Brunswick: Rutgers University Press. [In Press]
LEE, Sandra "Ethics of Identifying Race in the New Genetics"
Lee, Sandra Soo-Jin, Joanna Mountain, Barbara A. Koenig. "The Meanings of Race in the New Genomics: Implications for Health Disparities Research." Yale Journal of Health Policy, Law and Ethics. Spring 2001, pp33-75.
Lee, Sandra Soo-Jin. "Genetics and Racial Minorities." Stephen Post, ed., Encyclopedia of Bioethics, 3rd ed. 2003.
Lee, Sandra Soon-Jin. "Race, Distributive Justice and the Promise of Pharmacogenomics: Ethical Considerations." Amer. Jour. of PharmacoGenomics. 2003; 3(6): 385-392.
LERMAN, Caryn "Decisions and Outcomes of BRCA1/2 Test for Breast Patients"
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.
Claudine Isaacs, Beth N. Peshkin, Marc Schwartz, Tiffani A. DeMarco, David Main, Caryn Lerman. "Breast and Ovarian Cancer Screening Practices in Healthy Women with a Strong Family History of Breast or Ovarian Cancer." Breast Cancer Research and Treatment. January 2002; 71(2):103-112.
Marc D. Schwartz, Beth N. Peshkin, Chanita Hughes, David Main, Claudine Isaacs, and Caryn Lerman. "Impact of BRCA1/BRCA2 Mutation Testing on Psychologic Distress in a Clinic-Based Sample." Journal of Clinical Oncology. January 15 2002: 514-520.
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.
LESTER, Helen "Medicine at the Crossroads"
"Medicine at the Crossroads: Conceiving the Future." New York: WNET/Thirteen, 1990. (8 part video series.)
MAGYARI, Trish "Cystic Fibrosis Carrier Screening Educational Materials"
CF Carrier Testing: The Choice is Yours. Silver Spring: Macro International, 1994. (Educational Video)
MAHOWALD, Mary "The Human Genome Project and Women"
Mahowald, M.B. Women and Children in Health Care: An Unequal Majority. New York: Oxford University Press, 1993.
Mahowald, M.B. "Toward Gender Justice in Genetics." Proceedings of the International Social Philosophy Conference. Helsinki, Finland: University of Helsinki, August 1993.
Mahowald, M.B. "Reproductive Genetics and Gender Justice." In: Women and Prenatal Testing: Facing the Challenges of Genetic Technology, eds. K. Rothenberg and E. Thompson. Columbus: Ohio State University Press, 1994. 304p.
Lester, L. et al. "The Human Genome Project and Women: Cystic Fibrosis, a Case Study." Journal of Women's Health, December 1995; 4: 623-635.
Mahowald, M.B. et al. "The New Genetics and Women." The Milbank Quarterly. 1996; 74: 239-283.
Ravin, A.J., M.B. Mahowald and C.B. Stocking. "Genes or Gestation? Attitudes of Women and Men about Biologic Ties to Children." Journal of Women's Health. 1997; 6(6): 639-647.
Mahowald, M.B., Ed. and author. "The Human Genome Project and Women." and "Gender Justice in Genetics." Women's Health Issues. July/August 1997; 7(4): 281p.
MALEY, Julie "An Educational Ethics Casebook for Genetic Counseling"
Maley, J.A. and ad hoc Committee on Ethical Codes and Principles, NSGC. An Ethics Casebook for Genetic Counselors. Charlottesville, Virginia: University of Virginia, 1994.
MARCHANT, Gary "Genetic Susceptibility and Environmental Regulation"
Markel, H. Quarantine! East European Jewish Immigrants and the New York City Epidemics of 1892. Baltimore, Maryland: The Johns Hopkins University Press. 1997. 262p.
Marchant, G. "Genomics and Toxic Substances: part II - Toxicogenetics." Environmental Law Reporter. 2003; 33: 10641-10667.
Sharp, R.R., Udell, M.A., Wilson, S.H. "Shaping Science Policy in the Age of Genomics." Nature Reviews Genetics. 2004; 5: 311-316. [PubMed]
Grodsky, J.A. "Genetics and Environmental Law: Redefining Public Health." California Law Review. 2005; 93: 171-270.
Marchant, G. "Genetic Data in Toxic Tort Litigation." Law and Policy. [Forthcoming 2006]
Silver, K., Sharp, R.R. "Ethics Considerations in Testing Workers for the Glu69 Marker of Genetic Susceptibility to Chronic Beryllium Disease.7quot; Journal of Occupational and Environmental Medicine [Forthcoming 2006].
Silver, K., Sharp, R.R. "Ethics Considerations in Testing Workers for the Glu69 Marker of Genetic Susceptibility to Chronic Beryllium Disease.7quot; Journal of Occupational and Environmental Medicine [Forthcoming 2006].
MARKEL, Howard ""The Stigma of Disease: Implications of Genetic Testing""
Markel, H. "The Stigma of Disease: Implications of Genetic Screening." American Journal of Medicine. August 1992: 93; 209-15.
Markel, H. "Knocking out the Cholera': Cholera, Class, and Quarantines in New York City, 1892." Bull Hist Med 1995; 69: 420-457.
Markel, H. "Di Goldine Medina (The Golden Land): Historical Perspectives of Eugenics and the East European (Ashkenzai) Jewish-American Community, 1880-1925." Health Matrix: Journal of Law-Medicine. Winter 1997; 7(1): 49-64.
Marchant, G. "Genomics & Toxic Substances: Part II-Toxicogenetics." Envir. Law Rep. 2003; 33: 10641-10667.
MARSHALL, Patricia "Consent in Genetic Research: An International Trial"
Marshall P. Informed consent in international health research. Journal of Empirical Research on Human-Research Ethics, 1(1):25-42. 2006.
Marshall PA, Adebamowo CA, et al. Voluntary Participation and Informed Consent to International Genetic Research. American Journal of Public Health, 96(11): 1989-1995. 2006. [PubMed]
Marshall P. Commentary: Politics, Culture and governance in the Development of Prior Informed Consent in Indigenous Communities, JP Rosenthal. Current Anthropology, 47(1): 134-135. 2006.
Marshall P. Cultural Competence and Informed Consent in International Health Research. Cambridge Quarterly of Healthcare Ethics. [In Press]
MEHLMAN, Maxwell "Access to the Genome: Justice at the Frontier of Science"
Mehlman, M., J. Botkin and A. Scarrow. "Coverage of genetic technology under national health reform." Am J Hum Genet. 1994; 55: 1054-1060.
Botkin, J., R.T. Croyle., K.R. Smith et al. "A model protocol for evaluating the behavioral and psychosocial effects of BRCA1 testing." JNCI. 1996; 88: 872-882.
Mehlman, M.J. and K. Visocan. "Medicare and Medicaid: Are They Just Health Care Systems?" Houston Law Review: Winter 1992; 29(4): 835-
Mehlman, M.J. and J.R. Botkin. Access to the Genome: The Challenge to Equality. Washington, DC: Georgetown University Press. 1998. 152p.
Botkin, J., W. McMahon and L. Francis (eds). Genetics and Criminality: The Potential Misuse of Scientific Information in Court. The American Psychological Association Press, 1999.
MEISLER, Miriam "Genome Center Education Program"
Gregory, P. and F.S. Collins. "Assessment of High School Student Attitudes toward the Human Genome Project." American Journal of Human Genetics. 1992; 51(4):A140.
MERZ, Jon "Informed Consent to DNA Banking for Research"
Merz J.F, M.K, Cho, and P. Sankar. "Familial disclosure in defiance of nonconsent." American Journal of Human Genetics. 1998; 63: 898-899.
Merz J.F. "IRB review: necessary, nice, or needless?" Annals of Epidemiology. 1998; 8: 479-481.
Merz J.F., D.G.B. Leonard, and E.R. Miller. "IRB review and consent in human tissue research." Science. 1999; 283: 1647-1648.
Beskow L.M., Burke W., Merz J.F., et al. "Informed consent for population-based research involving genetics." J Am Med Assoc 286(18): 2315-2321 November 14, 2001
Merz J.F. 'The ethics of research on informed consent." Controlled Clinical Trials. 23(2): 172-177 April 2002
MICKLOS, David "Digital Image Archive on the American Eugenics Movement"
Micklos, D., Carlson, E. "Engineering American Society: The Lesson of Eugenics." Nature Reviews. November 2000; 1: 153-158.
Image Archive on the American Eugenics Movement.
Levitt, M.L. "Ethical Issues in Constructing a Eugenics Web Site." In M. BehrndeKlodt and P. Wosh eds., Privacy and Confidentiality Reader. Chicago: Society of American Archivists. (In press).
MIESFELDT, Susan "Attitudes About Hereditary Breast Cancer"
Meisfeldt S., Jones S. Cohn W., Ropka M. "Knowledge about Breast Cancer Risk Factors and Hereditary Breast Cancer among Women with Early-Onset Breast Cancer." Familial Cancer. 1: 135-141, 2002.
UVA Health System. "Are you at risk for hereditary breast cancer?" Family History Brochure and Companion Guide for Health Care Providers. 2003 The University of Virginia.
Miesfeldt S., Cohn W.F., Jones S.M., et al. "Breast cancer survivors' attitudes about communication of breast cancer risk to their children." Am J Med Genet. C 119C (1): 45-50 May 15 2003
MILLER, Suzanne "Facilitating Well-Informed Decisions for BRCA Testing"
Shoda, Y., Mischel, W., Miller, S.M., Diefenbach, M.A., Daly, M., & Engstrom, P. "Psychological interventions and genetic testing: Facilitating informed decisions about BRCA1/2 cancer susceptibility." Journal of Clinical Psychology in Medical Settings. 1998; 5: 3- 17.
Miller, S.M. and M.A. Diefenbach. "The Cognitive-Social Health Information Processing (C-SHIP) model: A theoretical framework for research in behavioral oncology." In Krantz & A. Baum (Eds.), Technology and methodology in behavioral medicine. NJ: Lawrence Erlbaum. July 1998.
Bruner, D.W., Baffoe-Bonnie, A., Miller, S.M., et.al. "A prostate cancer risk assessment program: A model for early detection of prostate cancer." Oncology. 1999; 13: 325-334.
Diefenbach, M., Miller, S.M., & Daly, M. "Specific worry about breast cancer predicts mammography use in women at risk for breast and ovarian cancer." Health Psychology. 1999; 18: 532-6.
Miller, S.M., V. Green and C.B. Bales. "What you don't know can hurt you: A cognitive-social framework for understanding children's responses to risk." In M. Lewis and D. Ramsay (Eds.), Soothing and Stress. NJ: Lawrence Erlbaum. 1999.
Miller, S.M. and M.A. Diefenbach. "Stress and coping in the cancer context." In M.Lewis and J. Haviland (Eds.), Handbook of Emotion: Second Edition. New York, NY: The Guilford Press. 2000.
Miller, S.M., Diefenbach, M.A., Kruus, L., Ohls, L., Hanks, G., Bruner, D., Baffoe-Bonnie, A., & Engstrom, P.E. "Psychological and screening profiles of first degree relatives of prostate cancer patients." Journal of Behavioral Medicine. 2001; 24: 247-258.
Hurley, K.E., Miller, S.M., Costalas, J.W., & Daly, M.B. "Anxiety/uncertainty reduction as a motivation for interest in prophylactic oophorectomy in women with a family history of ovarian cancer." Journal of Women's Health and Gender-Based Medicine. 2001; 10: 189-199.
Miller, S.M., Fang, C.Y., Diefenbach, M.A., & Bales, C. "Tailoring psychosocial interventions to the individual's health information processing style: The influence of monitoring versus blunting in cancer risk and disease." In A. Baum & B. Andersen (Eds.), Psychosocial interventions in cancer. Washington D.C.: American Psychological Association. 2001.
Miller S.M., Sherman K., Rodoletz M., et "The role of monitoring and anticipated BRCA1/2 carrier status on family communication intentions and plans among women with a hereditary pattern for breast/ovarian cancer" Psychosom Med. 64(1): 90 January-February 2002
Daly M.B., Barsevick A., Miller S.M., et al. "Communicating genetic test results to the family: A six-step, skills-building strategy" Fam Community Health. 24(3): 13-26 October 2001
Fang, C.F., Miller, S.M., Daly, M., & Hurley, K. "The influence of coping style and risk perceptions on decisions to undergo prophylactic oophorectomy among FDRs." Psychology and Health. 17(3): 365-376 June 2002.
Miller, S.M., J.S. Buzaglo, V. Simms et al. "Monitoring styles in women at risk for cervical cancer: Implications for the framing of health-relevant messages." In Special Issue "Innovative Approaches to Health Behavior Change," Annals of Behavioral Medicine. (In press).
MOSELEY, Ray "Insurance Implications of a Complete Human Genome Map"
Crandall, L.A. and R.E. Moseley. "Public Policy Implications of Scientific Research: The Human Genome Initiative and the Future of Insurance." The New Biologist. December 1991; 3(12): 1135-1136.
Moseley, R.E., L.A. Crandall, M.A. Dewar et al. "Ethical Implications of a Complete Human Gene Map." Business and Professional Ethics. Winter 1991; 10(4): 1-14.
Dewar, M.A., R.E. Moseley, H. Ostrer et al. "Genetic Screening by Insurance Carriers." (Letter) JAMA. March 1992; 267(9): 1207-1208.
McCrary, S.V., W.L. Allen, R.E. Moseley et al. "Ethical and Practical Implications of the Human Genome Initiative for Family Medicine." Archives of Family Medicine. 1993; 2(11): 1158-1163.
Ostrer, H., W.L. Allen, L.A. Crandall et al. "Insurance and Genetic Testing: Where Are We Now?" American Journal of Human Genetics. 1993; 52: 565-577.
McCrary S.V. and W.L. Allen "The Human Genome Initiative and Primary Care." In: Ethics: Critical Issues for Today's Health Professional, eds. J.F. Monagle and D.C. Thomama. Gaithersburg, Maryland: Aspen Publishers, 1994. 447p.
MOULTON, Benjamin "DNA Fingerprinting and Civil Liberties"
Maclin, T. "Is Obtaining an Arrestee's DNA a Valid Special Needs Search Under the Fourth Amendment? What Should (and Will) the Supreme Court Do? Regulation of Biobanks." Journal of Law Medicine & Ethics. 2005, 33(1):102-24. [PubMed]
Simoncelli, T., Steinhardt, B. "California's Proposition 69: A Dangerous Precedent for Criminal DNA Databases. Expert Testimony: Bridging Bioethics and Evidence Law." Journal of Law, Medicine & Ethics. 2005, 33(2):279-293. [PubMed]
Noble, A.A., Moulton, B.W. eds. "DNA Fingerprinting and Civil Liberties." The Journal of Law, Medicine & Ethics. 2006; 34(2): 171-475.
MURRAY, Jeff "ELSI Core for the Cooperative Human Linkage Center (CHLC)"
eir, R.F. and J.R. Horton. "DNA Banking and Informed Consent--Part 1." IRB: A Review of Human Subjects Research. July-August 1995; 17(4): 1-4.
Weir, R.F. and J.R. Horton. "DNA Banking and Informed Consent--Part 2." IRB: A Review of Human Subjects Research. September-December 1995; 17(5&6): 1-8.
MURRAY, Thomas "Ethical Decision Making for Newborn Genetic Screening"
Botkin, J.R. "Research for Newborn Screening: Developing a National Framework." Pediatrics 2005; 116(4):862-71. [PubMed]
Botkin, J.R., Clayton, E.W., Fost, N.C., Burke, W., Murray, T.H., Baily, A.M., Wilfond, B., Berg, A., Ross, L.F. "Newborn Screening Technology: Proceed With Caution."quot; Pediatrics. 2006; 117(5): 1793-1805. [PubMed]
MURRAY, Thomas "The Human Genome Initiative and Access to Health Care"
Murray, T.H. "Genetics and the Moral Mission of Health Insurance." Hastings Center Report: 1992; 22(6): 12-17.
Murray, T.H. "Ethics, Genetic Prediction, and Heart Disease." American Journal of Cardiology. September 1993; 72(10): 80D-84D.
Murray, T.H., M.A. Rothstein, and R.F. Murray, Jr. The Human Genome Project and the Future of Health Care. Bloomington, IN: Indiana University Press, 1996.
Murray, T.H. "Genetic Exceptionalism and 'Future Diaries': Is Genetic Information Different from Other Medical Information," in Mark A. Rothstein, Ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. New Haven: Yale University Press, 1997.
NELKIN, Dorothy "Human Heredity in American Popular Culture"
Dreyfus, R.C., and D. Nelkin. "The Jurisprudence of Genetics." Vanderbilt Law Review. 1992; 45(2):313-348.
Nelkin, D. "The Social Power of Genetic Information." In: The Code of Codes: Scientific and Social Issues in the Human Genome Project, eds. D.J. Kevles and L. Hood. Cambridge: Harvard University Press; 1992.
Nelkin, D. "Prospecting for Genes." Scientist. November 23, 1992.
Nelkin, D. "The Grandiose Claims of Geneticists." Chronicle of Higher Education. March 3, 1993: B1-B2.
Nelkin, D. "Promotional Metaphors and Their Popular Appeal." Public Understanding of Science. 1994; 3: 25-31.
Nelkin, D. "Promotional Metaphors and Their Popular Appeal." Public Understanding of Science. 1994; 3: 25-31.
Nelkin, D. "After Daubert: The Relevance and Reliability of Genetic Information." Cardozo Law Review. April 1994: 15(6-7); 2119-2128.
Nelkin, D. "Forms of Intrusion: Comparing Resistance to Information Technology and Biotechnology." In: Resistance to Technology, Martin Bauer, Ed. Cambridge: Cambridge University Press; 1995.
Nelkin, D. and L. Tancredi "Health Screening and Testing in the Public Health Context." In: Encyclopedia of Bioethics--Revised Edition. New York: Simon & Schuster MacMillan, 1995. 1129-1132p.
Nelkin, D. "The Media-ted Gene: Stereotyping Gender and Race." In: Deviant Bodies, eds. J. Urla and J. Terry. Bloomington: Indiana University Press; 1995. 416p.
Nelkin, D. and M.S. Lindee. The DNA Mystique: The Gene as a Cultural Icon. New York: W.H. Freeman and Company, 1995. 276p.
Nelkin, D. "Forms of Intrusion: Comparing Resistance to Information Technology and Biotechnology." In: Resistance to Technology, Martin Bauer, Ed. Cambridge: Cambridge University Press; 1995.
Nelkin, D. and L. Tancredi "Health Screening and Testing in the Public Health Context." In: Encyclopedia of Bioethics--Revised Edition. New York: Simon & Schuster MacMillan, 1995. 1129-1132p.
Nelkin, D. "The Media-ted Gene: Stereotyping Gender and Race." In: Deviant Bodies, eds. J. Urla and J. Terry. Bloomington: Indiana University Press; 1995. 416p.
Nelkin, D. and M.S. Lindee. The DNA Mystique: The Gene as a Cultural Icon. New York: W.H. Freeman and Company, 1995. 276p.
PAGE, David "Human Genome Project: Science, Law, and Social Change"
Whitehead Institute for Biomedical Research and American Society for Law, Medicine & Ethics. "The Human Genome Project: Science, Law and Social Change in the 21st Century." Whitehead Policy Symposium Report and CD-ROM. April 23-24, 1998. Cambridge, Massachusetts.
Whitehead Institute for Biomedical Research, The George Washington University Medical Center and American Society for Law, Medicine & Ethics. "Genes and Society: Impact of New Technologies on Law, Medicine, and Policy." Whitehead Policy Symposium Report and CD-ROM. May 10-12, 2000. Cambridge, Massachusetts.
PAGON, Roberta "Genline: An Electronic Clinical Genetics Knowledge Base"
Pagon, R.A. and P. Tarczy-Hornoch. GeneClinics: Medical Genetics Knowledge Base [geneclinics.org].
PARAD, Richard "Parent Education on DNA Testing in the Newborn Screen"
Wheeler P.G., Smith R., Dorkin H., Parad R.B., Comeau A.M., Bianchi D.W. "Genetic counseling after implementation of statewide cystic fibrosis newborn screening: Two years' experience in one medical center." Genetics in Medicine 2001; 3(3):411-415.
PARENS, Erik "Prenatal Testing for Genetic Disability"
Parens, E. and A. Asch. "The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations." Special Supplement, Hastings Center Report . September-October 1999; 29(5): S1-S22.
Parens, E. and A. Asch. eds. Prenatal Testing and Disability Rights. Washington, D.C.: Georgetown University Press, 2000. 371p.
PARENS, Erik "Tools for Public Conversation about Behavioral Genetics"
Parens E. "Genetic Differences and Human Identities: On Why Talking about Behavioral Genetics Is Important and Difficult." Hastings Center Report. Special Supplement. January-February 2004: S1-S34.
Parens, E., Chapman, A.R., Press, N.A. (eds.) Wrestling with Behavioral Genetics: Science, Ethics, and Public Conversation. Baltimore, Maryland: Johns Hopkins University Press. 2006.
PETERS, Theodore "Theological Questions Raised by the Human Genome Initiative"
Peters, T. and R.J. Russell. "The Human Genome Project: What Questions Does It Raise for Theology and Ethics?" Midwest Medical Ethics. Summer 1992: 8(1); 12-17.
Shannon, T.A. "Ethical Issues in Genetic Engineering: A Survey." Midwest Medical Ethics. Summer 1992; 8(1): 26-29.
Cole-Turner, R. The New Genesis: Theology and the Genetic Revolution. Westminster: John Knox Press, 1993. 127p.
Cole-Turner, R. "Religion and the Human Genome Project." Journal of Religion and Health. 1993: 31(2); 161-173.
Peters, T. "Genome Project Forces New Look at Ethics, Law." Forum for Applied Research and Public Policy: Fall 1993; 8(3): 5-13.
Cole, R.D. "Genetic Predestination." Dialog: a Journal of Theology. 1994; 33(1): 17-22.
Cole-Turner, R. "Genetic Counseling and Pastoral Counseling." Dialog: a Journal of Theology. 1994; 33(1): 49-53.
Heffner, P. "Determinism, Freedom, and Moral Failure." Dialog: a Journal of Theology. 1994; 33(1): 23-29.
Lebacqz, K. "Genetic Privacy: No Deal for the Poor." Dialog: a Journal of Theology. 1994; 33(1): 39-48.
Peters, T. "On the Gay Gene: Back to Original Sin Again?" Dialog: a Journal of Theology. 1994; 33(1): 30-38.
Cole-Turner, R. "The Genetics of Moral Agency." In: The Genetic Frontier: Ethics, Law and Policy, eds. M. Frankel and A. Teich. Washington, DC: AAAS, 1994.
Peters, T. "Intellectual Property and Human Dignity." in: The Genetic Frontier: Ethics, Law and Policy, eds. Frankel and Teich. Washington, DC: AAAS, 1994.
Peters, T., Ed. Genetics: Issues of Social Justice. Cleveland: Pilgrim Press, 1998.
PETERSEN, Gloria "Gene Tests for Colon Cancer Risk: Psychosocial Studies"
Petersen, G.M. "Genetic epidemiology of colorectal cancer." European Journal of Cancer. 1995; 31A: 1047-50.
Petersen, G.M. "Genetic counseling and predictive testing for colorectal cancer risk." International Journal of Cancer. 1996; 69: 53-54.
Petersen, G.M., E. Larkin, A.M. Codori et al. "Attitudes toward Colon Cancer Gene Testing: Survey of Relatives of Colon Cancer Patients." Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 337-344. [Pubmed]
Codori, A.M., G.M. Petersen, D.L. Miglioretti et al. "Attitudes toward Cancer Gene Testing: Factors Predicting Test Uptake."Cancer Epidemiology, Biomarkers & Prevention Special Issue. April 1999; 8(4): 345-351. [ Pubmed]
PHELAN, Jo "Genes, Disease and Stigma: A Study of Public Attitudes and Beliefs"
Phelan, J.C., Cruz-Rojas, R., Reiff, M. "Genes and stigma: The connection between perceived genetic etiology and attitudes and beliefs about mental illness." Psychiatric Rehabilitation Skills. 2002; 6: 159-85.
Phelan, J.C. "Genetic bases for mental illness?a cure for stigma?" Trends in Neurosciences. 2002; 25(8):430-1. [PubMed]
Phelan, J.C. "Geneticization of deviant behavior and consequences for stigma: The case of mental illness." Journal of Health and Social Behavior. 2005; 46(4): 307-22. [PubMed]
Phelan, J.C., Yang, L., Cruz-Rojas, R. "Effects of attributing serious mental illnesses to genetic causes on orientations to treatment." Psychiatric Services. 2006. 57(3):382-7. [PubMed]
Anglin, D.M, Link B.G., Phelan, J.C. "Racial differences in stigmatizing attitudes toward people with mental illness: Extending the literature." Psychiatric Services. [In Press].
PHILLIPS, John "Cystic Fibrosis Screening: An Alternative Paradigm"
Campbell, P.W. III and J.A. Phillips, III. "The Cystic Fibrosis Gene and Relationships to Clinical Status." Seminars in Respiratory Infections. 1992; 7: 150-157.
Campbell, P.W. et al. "Association of Poor Clinical Status and Heavy Exposure to Tobacco Smoke in Cystic Fibrosis Patients Homozygous for the F508 Deletion." Journal of Pediatrics. 1992; 12: 261-264.
Raskin, S. et al. "Cystic Fibrosis Genotyping by Direct PCR Analysis of Guthrie Blood Spots." PCR Methods and Applications. 1992; 2: 154-156.
Raskin S. and J.A. Phillips, III. "Genetic Diagnosis of Cystic Fibrosis in the Perinatal Period." Tennessee Perinatal Association Newsletter. 1992; 2: 6.
Raskin, S. et al. "Utility of Internal Markers to Improve the Accuracy of Cystic Fibrosis (CF) Genotype Analysis." Biotechniques. 1992; 13: 372-374.
Raskin, S. et al. "DNA Analysis of Cystic Fibrosis in Brazil by Direct PCR Amplification from Guthrie Cards." American Journal of Medical Genetics. 1993; 46: 665-669.
"The Cystic Fibrosis Genotype-Phenotype Consortium: Correlation Between Genotype and Phenotype in Cystic Fibrosis: Analysis of Seven Common Mutations." New England Journal of Medicine. 1993; 329: 1308-1313.
Parker, R.A. and J.A. Phillips, III. "Population Screening for Carrier Status: Effects of Test Limitations on Precision of Carrier Prevalence Sites." American Journal of Medical Genetics. 1994; 49: 317-322
Campbell, P.W. et al. "Detection of Pseudomonas (Burkholderia) Cepacia Using Species-Specific PCR." Pediatric Pulmonology. 1995; 20: 44-49.
Clayton, E.W., V.L. Hannig, J.P. Pfotenhauer et al. "Teaching about Cystic Fibrosis Carrier Screening by Using Written and Video Information." The American Journal of Human Genetics. July 1995; 57(1): 171-181.
Clayton, E.W., V.L. Hannig, J.P. Pfotenhauer et al. "Lack of Interest by Nonpregnant Couples in Population-based Cystic Fibrosis Carrier Screening." The American Journal of Human Genetics. 1996; 58(3): 617-627.
"Let's Talk" An Introduction to Cystic Fibrosis Testing. (An educational brochure and videotape on cystic fibrosis testing). Nashville: Vanderbilt Division of Genetics, Vanderbilt University Medical Center.
POST, Stephen "Ethics, Genetics and Alzheimer Disease"
Post, S.G. The Moral Challenge of Alzheimer Disease. Baltimore: The Johns Hopkins University Press, December 1995.
Relkin, Norman et al. "Apolipoprotein E Genotyping in Alzheimer's Disease: A Consensus Statement." Lancet. 1996; 347(9008): 1091-1095.
Post, S.G., "Ethical Aspects of Geriatric Care." In Geriatric Medicine, edited by Dennis W. Jahnigan and Robert W. Schrier. Cambridge, Ma.: Blackwell Publications, 1996, pp. 245-255.
Post, S.G., "People with Dementia: A Moral Challenge." In Birth to Death: Science and Bioethics, edited by David C. Thomasma and Thomasine Kushner. Cambridge, U.K.: Cambridge University Press, 1996.
Post, S.G. "On Not Jumping the Gun: Ethical Aspects of Genetic Testing in Alzheimer Disease." Annals of the New York Academy of Sciences: Apolipoprotein E Genotyping in Alzheimer's Disease. December 1996; 802(16): 111-120.
Lynn, Joanne, D.L. Marson, S.G. Post, and G.L. Odenheimer. "Legal and Ethical Dilemmas in Alzheimer's Care." Patient Care. 15 December 1996; 30(20): 44-61.
Winblad, B., S. Hill, B. Beermann, S.G. Post, A. Wimo, "Issues in the Economic Evaluation of Treatment for Dementia," Alzheimer Disease and Associated Disorders. 1997; 11(Suppl. 3): 39-44.
Post, S.G., B. Beerman, H. Brodaty et al. "Ethical Issues in Dementia Drug Development: Position Paper from the International Working Group on Harmonization of Dementia Drug Guidelines." Alzheimer Disease and Associated Disorders. 1997; 11(Suppl. 3): 26-28.
Post, S.G., "Physician-Assisted Suicide in Alzheimer Disease." Journal of the American Geriatrics Society. 1997; 45: 647-651.
Post, S.G., "Slowing the Progression of Dementia: Ethical Issues" Alzheimer Disease and Associated Disorders. 1997; 11(Suppl. 5): 34-36 [General Discussion by P. Leber et al. pp. 37-39).
Post, S.G., "Resource Allocation and Societal Responses to Old Age: The Case of Alzheimer Disease." Ageing and Society. 1997; 17(1): 83-85.
Post, S.G. et al. Tough Issues: Ethical Guidelines of the Alzheimer Society of Canada. Toronto: Alzheimer Canada, 1997.
Post, S.G. et al. Ethics Considerations Series for National Dissemination, Alzheimer's Disease & Related Disorders Association. (adopted from the Fairhill Guidelines on Ethics in the Care of People with Alzheimer's Disease, S.G. Post, Principal Investigator). Chicago: National Alzheimer's Association, 1997.
Post, S.G., P.J. Whitehouse, R.H. Binstock et al. "The Clinical Introduction of Genetic Testing for Alzheimer Disease: An Ethical Perspective." JAMA. March 12, 1997; 277(10): 832-836. [Reply to Letters, JAMA, 278(12): 979.]
Post, S.G. and P.J. Whitehouse, eds. Genetic Testing for Alzheimer Disease: Ethical and Clinical Issues. Baltimore: Johns Hopkins University Press. 1998. 274p.
Post, S.G., "The Fear of Forgetfulness: A Grassroots Approach to Alzheimer Disease Ethics." Journal of Clinical Ethics. Spring 1998; 9(1): 71-80.
Post, S.G. and P.J. Whitehouse, "Emerging Anti-Dementia Drugs: A Preliminary Ethical View," Journal of the American Geriatrics Society. June 1998; 46(6): 784-787.
G. Cohen, R. Cook-Deegan, R.M. Green, S.G. Post et al. "Alzheimer Testing at Silver Years." Cambridge Quarterly Healthcare Ethics. Summer 1998; 7(3): 294-307.
Post, S.G., "Ethical Considerations in Pharmacoeconomics and Dementia." In Health Economics of Dementia, edited by Anders Wimo. San Diego: John Wiley and Sons, July 1998.
Post, S.G., "Social and Ethical Considerations." Pharmacotherapy of Alzheimer's Disease, Serge Gauthier, Ed. London: Martin Dunitz, Ltd. , October 1998.
Post, S.G., "Future Scenarios for the Prevention and Delay of Alzheimer Disease Onset in High Risk Groups - An Ethical Perspective." American Journal of Preventive Medicine. February 1999; 16(2): 105-110.
Post, S.G., "The Concept of Alzheimer Disease in a Hypercognitive Society." Concepts of Alzheimer Disease : Biological, Clinical, and Cultural Perspectives, edited by K. Maurer, P.J. Whitehouse, and J.F. Ballenger. Baltimore: Johns Hopkins University Press , January 2000. 312p.
Kosik, K.S., S.G. Post, and K.A. Quaid. "Ethical Implications of Early Diagnosis for Alzheimer Disease." Early Diagnosis of Alzheimer Disease (Current Clinical Neurology), edited by L.F.M. Scinto and K. Daffner. New York: Humana Press, February 2000. 300p.
Post, S.G., "Advocacy for People with Alzheimer Disease." Improved End-of-Life Care: The HMO Challenge, edited by Steven Miles and K. Faber-Langendoen. Frederick, Md.: University Publishing Group (In press).
PRESS, Nancy "Family Disclosure of Cancer Risk: An Ethnographic Study"
Press N.A., Fishman J.R., Koenig B.A. "Collective Fear, Individualized Risk: The Social and Cultural Context of Genetic Testing for Breast Cancer." Nursing Ethics. 2000; 7(3):237-49. [PubMed]
Press, N., Reynolds, S., Pinsky, L., Murthy, V., Leo, M., Burke, W. "That's like chopping off a finger because you're afraid it might get broken: Disease and illness in women's views of prophylactic mastectomy." Social Science & Medicine 2005; 61(5): 1106-17. [PubMed]
PROCTOR, Robert "Cancer and the Human Genome: Ethical Implications"
Proctor, R. Cancer Wars: How Politics Shapes What We Know and Don't Know about Cancer. New York; BasicBooks (Division of HarperCollins Publishers), 1995. 356p.
PROWS, Cynthia "Summer Genetics Program for Nursing Faculty"
Prows, C.A. and C. Hetteberg. Genetics Program for Nursing Faculty Newsletter: A Focus on Educational Resources. 1998; 1(1): 1-5
Prows, C.A. and C. Hetteberg. Genetics Program for Nursing Faculty Newsletter: A Focus on Educational Resources. 1998; 1(2): 1-3.
Prows, C.A. and C. Hetteberg. Genetics Program for Nursing Faculty Newsletter: A Focus on Educational Resources. 1999; 2(1):1-5.
Hetteberg, C., C.A. Prows, C. Deets, C. Kenner and R. Monsen. "National Survey of Genetics Content in Basic Nursing Preparatory Programs in the United States." Nursing Outlook. July/August 1999; 47(4): 168-174.
Prows, C., K. Latta, C. Hetteberg, J. Williams, C. Kenner and R. Monsen. "Preparation of Undergraduate Nursing Faculty to Incorporate Genetics Content into Curricula." Biological Research for Nursing. October 1999: 1(2); 108-112.
Jenkins, J.F., Prows, C., Dimond, E., Monsen, R., and Williams, J. "Recommendations for educating nurses in genetics." Journal of Professional Nursing. 2001; 17(6): 283-290.
RAU, Richard "DNA Forensics Science: An Update--Supplement"
National Research Council. The Evaluation of Forensic DNA Evidence. Washington, DC: National Academy Press, 1996.
ROBERTSON, John "Preimplantation genetic diagnosis & genetic modification"
Robertson JA. "Extending preimplantation genetic diagnosis: the ethical debate." Human Reproduction. 2003; 18(3): 465-471.
ROBERTSON, John "The Use of Genetic Information in Reproductive Decisions"
Robertson, J.A. "Ethical and legal issues in human embryo donation." Fertility and Sterility. November 1995: 64(5); 885-894.
Robertson, J.A. "The Case of the Switched Embryos." Hastings Center Report. Nov-Dec 1995: 25(6); 13-20.
Robertson, J.A. "Genetic Selection of Offspring Characteristics." Boston University Law Review. June 1996: 76(3); 421-482.
ROTER, Deborah "Genetic Counseling Processes and Analogue Client Outcome"
Roter, D., Ellington, L., Larson, S., Dudley, W. "The Genetic Counseling Video Project (GCVP): Models of Practice." AJMG. [In Press]
ROTHMAN, Sheila "A Paradox of Genetic Research: Race, Ethnicity & Disease"
Rothman SM, SI Brandt-Rauf, et al. Ashkenazi Jews and Breast Cancer: The Consequences of Linking Ethnic Identity to Genetic Disease. American Journal of Public Health, 96(11):1979-88. 2006. [PubMed]
ROTHSCHILD, Joan "Science, Technology and the Perfect Child: An Ethics and Values Critique"
Rothschild, Joan. "Engineering the 'Perfect Child': Feminist Responses," in M. Pellikan-Engel, Ed., Against Patriarchal Thinking: A Future Without Discrimination? Amsterdam: VU University Press, 1992. pp. 233-41
Rothschild, Joan. "The Perfect Baby," in B.K. Rothman and D.L. King, eds., Encyclopedia of Childbearing: Critical Perspectives. Phoenix, AZ: Oryx Press, 1993. pp. 302-03
Rothschild, J. The Dream of the Perfect Child. Bloomington, IN; Indiana University Press: June 20, 2005. 304p.
ROTHSTEIN, Mark "Genetic Information and Life Insurance Underwriting"
Rothstein, M.A., ed. Genetics and Life Insurance: Medical Underwriting and Social Policy. MIT Press: Cambridge & London. 2004.
ROTHSTEIN, Mark "Genetic Ties and the Future of the Family"
Rowley, P.T. et al. "Cystic Fibrosis Carrier Screening: Knowledge and Attitudes of Prenatal Care Providers." American Journal of Prevention Medicine. 1993: 9(5); 261-266.
Loader, S. et al. "Cystic Fibrosis Carrier Population Screening in the Primary Care Setting." American Journal of Human Genetics. 1996; 59: 234-247.
Rowley, P.T., S. Loader and J.C. Levenkron. "Cystic Fibrosis Carrier Population Screening: A Review." Genetic Testing. 1997; 1(1): 53-59.
Levenkron J.C., Loader S., Rowley P.T. "Carrier screening for cystic fibrosis: test acceptance and one year follow-up." American Journal of Medical Genetics. 1997; 73: 378-386.
Rowley P.T., Loader S., Kaplan R.M. "Prenatal screening for cystic fibrosis carriers: an economic evaluation." American Journal of Medical Genetics. 1998; 63: 1160-1174.
Haddow J.E. et al. "Issues in implementing prenatal screening for cystic fibrosis; results of a working conference." J Medical Screening. 1999; 6: 60-66.
ROTHSTEIN, Mark "Legal and Ethical Issues Raised by the Human Genome Project"
Rothstein, M.A., Ed. Legal and Ethical Issues Raised by the Human Genome Project. Houston, Texas: University of Houston Health Law and Policy Institute, March 1991. 449p.
Health Law Issue. "Symposium: Legal and Ethical Issues Raised by the Human Genome Project." University of Houston Law Review. Spring 1992; 29(1).
Health Law Issue. "Symposium: Legal and Ethical Issues Raised by the Human Genome Project." University of Houston Law Review. Spring 1992; 29(1).
Billings, P.A. et al. "Case Study: But Is He Genetically Diseased?" Hastings Center Report. Jul-Aug 1992: 22(4)Special Supplement; S18-20.
ROTHSTEIN, Mark "Pharmacogenomics and Minority Populations"
Rothstein, M.A., Epps, P.G. "Pharmacogenomics and the (Ir)relevance of Race," 1 Pharmacogenomics J. 104-108 (2001).
Rothstein, M.A. and Epps, P.G. "Ethical and Legal Implications of Pharmacogenomics." Nature Reviews. March 2001; 2: 228-231.
Rothstein, M.A. (ed.) Pharmacogenomics: Social, Ethical, and Clinical Dimensions. Wiley-Liss; (January 2003) 368p.
Palmer, L.I., Martin, R.C.G., Hein, D.W. "Chemopreventive drug treatment in subjects with genetic predisposition to cancer: prescriber liability and health care disparities" Pharmacogenomics. April 2004; 5(3): 319-329.
ROTHSTEIN, Mark "Genetic Ties and the Future of the Family"
Anderlik, M.R., Rothstein, M.A. "DNA-based Identity Testing and the Future of the Family: A Research Agenda." American Journal of Law, Medicine and Ethics. 2002: 28(215).
Murray, T.H. "DNA, Nurture, and Parenthood." Nature Review Genetics. 2003; 4(331).
Kaebnick, G.E. "Natural Father: Genetic Ties, Marriage, and Fatherhood." Cambridge Quarterly of Healthcare Ethics. (Forthcoming).
Parness, J.A. "Old Fashioned Pregnancy, Newly-Fashioned Paternity." Syracuse Law Review. 2003: 53; 57-86.
Murray, T.H., Kaebnick, G.E. "Genetic ties and genetic mixups." Journal of Medical Ethics. 2003; 29: 68-69.
Genetic Ties and the Future of the Family. eds. Rothstein, M.A., Murray, T.H., Anderlik, M.R., Kaebnick, G.E. (accepted for publication by Johns Hopkins University Press).
Genetic Bonds and Family Law: The Challenge of DNA Parentage Testing. Conference Proceedings. March 27-28, 2003. New Orleans.
Anderlik, M.R. "Assessing the Quality of DNA-based Parentage Testing: Findings from a Survey of Labortories." 43 Jurimetrics 291 (2003).
ROYAL, Charmaine "Center on Genomics and Social Identity in the African Diaspora"
Brezo J, Royal C, Ampy F, Headings V. Ethnic Identity and Diabetes-Type-2 Health Attitudes in Americans of African Ancestry. Ethnicity and Disease, 16: 624-632. 2006. [PubMed]
Royal C. "Race" and Ethnicity in Science, Medicine, and Society. BioSocieties, 1(3):325-328. 2006.
Foster M, Royal C, Sharp R. The Routinization of Genomics and Genetics: Implications for Ethical Practices. Journal of Medical Ethics, 32(11):635-8. 2006. [PubMed]
Payne P. Race, Genetics, Drugs, and Health Care Costs: The Story of BiDil. [In Press]
SAGOFF, Mark "Concepts of Nature, Biotechnology, and the Human Genome"
Sagoff, M. "Genetic Engineering and the Concept of the Natural." in Philosophy and Public Affairs Quarterly. Spring/Summer 2001; 21(2/3): 2-10.
Sagoff, M. "Biotechnology and Agriculture: The Common Wisdom and Its Critics." Indiana Journal of Global Legal Studies. Fall 2001; 9(1): 13-34.
Sagoff, M. "Are Genes Inventions? An Ethical Analysis of Gene Patents." in J. Burley and J. Harris, A Companion to Genethics. Oxford: Blackwell Publishers, 2002. p. 420-37.
Sagoff, M. "Intellectual Property and Products of Nature." American Jounral of Bioethics. 2002; 2(3): 12-13.
Sagoff, M. "Transgenic Chimeras," American Journal of Bioethics. 2003; 3(3).
Wasserman, D. "Personal Identity and Moral Appriasal of Prenatal Genetic Therapy." in Mutating Concepts, Evolving Disciplines: Genetics, Medicine, and Society. Parker, L. and Ankeny, R. eds. (Kluwer, 2002)
Wasserman, D., Wachbroit, R. "Ethical Issues in Reproductive Technology." in Oxford Handbook of Practical Ethics. Lafollette, H. ed. (Oxford University Press, 2003)
Wasserman, D. "Species and Races, Chimeras and Multiracial People." American Journal of Bioethics. 2003; 3(3).
Wasserman, D. "This Old House: The Human Genome and Human Body as Objects of Historic Preservation." Politics and the Life Sciences. March 2003; 22(1): 43-47.
Gehring, V. (ed) "Genetic Prospects: Essays on Biotechnology, Ethics, and Public Policy." Institute for Philosophy and Public Policy Studies. Rowman & Littlefield Publishers, August 2003.
SANKAR, Pamela "Advancing the Race Dialog: Genes, Forensics & Medicine"
Sankar, P., Kahn, J. "BiDil: Race medicine or race marketing?" Health Affair. 2005; 24(6): W5455-W5463. [PubMed]
Rebbeck, T.R., Sankar, P. "Ethnicity, ancestry, and race in molecular epidemiologic research." Cancer Epidem Biomar 2005; 14(11): 2467-71. [PubMed]
Sankar, P., Cho, M.K., Wolpe, P.R., et al. "What is in a cause? Exploring the relationship between genetic cause and felt stigma". Genet Med 2006; 8(1): 33-42. [PubMed]
Rebbeck T.R., Halbert, C.H., Sankar, P. "Genetics, epidemiology, and cancer disparities: Is it black and white?" J Clin Oncol. 2006; 24(14): 2164-2169. [PubMed]
Sankar, P. "Hasty generalization and exaggerated certainties: Reporting genetic findings in health disparities research." New Genetics and Society. [In Press]
SANKAR, Pamela "Beyond stigma: Interpreting Genetic Difference"
Sankar P., Cho M.K. "Toward a new vocabulary of human genetic variation." Science November 2002; 298(15): 1337-1338.
Sankar P. "MEDLINE definitions of race and ethnicity and their application to genetic research." Nat Genet. 34(2): 119-119 June 2003.
Cho MK, Sankar P. "Forensic genetics and ethical, legal and social implications beyond the clinic." Nat Genet. Suppl. S NOV 2004; 36 (11): S8-S12.
SARKAR, Sahotra "Genetic Reductionism--Its Sources and Implications"
Sarkar, S. Genetics and Reductionism. Cambridge University Press. November 1998.
SCANLON, M. Colleen "Managing Genetic Information: Policies for US Nurses"
Scanlon, C. and W. Fibison. Managing Genetic Information: Implications for Nursing Practice. Washington, DC: American Nurses Association, 1995. 60p.
SCHNEIDER, William "Indiana and the Legacy of State and Local Eugenics"
Stern AM. We Cannot Make a Silk Purse Out of a Sow's Ear: Eugenics in the Hoosier Heartland. Indiana Magazine of History, 103(1):1-38. 2007.
SCHNEIDER, William "Research and Application of Genetics Blood Group: 1900-1950"
Wailoo, Keith, "Genetic markers of Segregation: Sickle Cell Anemia, Thalasssemia, and Racial Ideology in American Medical Writing, 1920-1950," 305-320.
Garratty, George, "Association of Blood Groups and Disease. Do Blood Group Antigens and Antibodies Have a Biological Role?" 321-44.
Marks, Jonathan, "The Legacy of Serological Studies In American Physical Anthropology," 345-62.
Schneider W.H. "La Recherche sur les Groupes Sanguins avant la DeuxiSme Guerre mondiale." Les sciences biologiques et m 1Adicales en France 1920-1950, eds. Claude Debru, Jean Gayon et Jean-Fran?ois Picard (Paris: CNRS-Editions, 1994), 311-27
Schneider W.H. "Hérédité, sang, et opposition á l'immigration dans la France des années trente," Ethnologie francaise, 24 (1994), 104-17.
Schneider W.H. "Blood Group Research in Great Britain, France and the United States between the World Wars." Yearbook of Physical Anthropology. 1995; 38: 77-104
Schneider, W.H. "The History of Research on Blood Group Genetics: Initial Discovery and Diffusion." History and Philosophy of the Life Sciences (W.H. Schneider, guest editor) 1996: 18(3); 277-303.
Schneider W.H. "The Grouping of Blood: How Karl Landsteiner's Discovery Changed Medicine." NEH Magazine. 1996; 17: 48-50.
Schneider, William H., guest Ed. special issue of History and Philosophy of the Life Sciences on "The First Genetic Marker: Blood group Research, Race and Disease, 1900-1950," 18 (1996), 273-362.
SHIELDS, Alexandra "Genetics, Vulnerable Populations and Health Disparities"
Shields AE, Fortun M, Hammonds E, King PA, Lerman C, Rapp R, Sullivan PF. The use of race variables in genetic studies of complex traits and the goal of reducing health disparities: A transdisciplinary perspective. American Psychologist, 6(1):77-103. 2005. [PubMed]
Shields AE. Trends in private insurance, Medicaid/SCHIP, and the health-care safety net: implications for asthma disparities. Chest, 132(5 Suppl):818S-30S. 2007. [PubMed]
SHIELDS, Alexandra "Lay Understanding of Race, Addiction and Genetics"
Shields AE, Blumenthal D, Weiss KB, Comstock CB, Currivan D, Lerman C. Barriers to translating emerging genetic research on smoking into clinical practice: perspectives of primary care physicians. Journal of General Internal Medicine, 20(2): 131-138. 2005. [PubMed]
Park E, Kleimann S, Pelan J, Shields AE. Anticipating clinical integration of genetically-tailored tobacco dependence treatment: Perspectives of primary care physicians. Nicotine and Tobacco Research, 9(2):271-9. 2007. [PubMed]
Schnoll R.A., Rukstalis M., Wileyto P. Shields A.E. Practice of smoking cessation treatment by primary care physicians: an update and renewed call for physician training. American Journal of Preventive Medicine. [In Press]
SHOULSON, Ira "Prospective Huntington At Risk Observational Study"
Hogarth P, Kayson E, Kieburtz K, Marder D. Oakes D, Rosas D, Shoulson I, Wexler NS, Young AB, Zhao H. The US-Venezuela Huntington's Disease Collaborative Research Group and the Huntington Study Group. Inter-Rater Agreement in the Assessment of the Motor Manifestations of Huntington's Disease. Mov Dis 20(3):293-297. 2005.
Huntington Study Group PHAROS Investigators (Shoulson I, primary author). At risk for Huntington's disease: The PHAROS (Prospective Huntington at risk observational study) cohort enrolled. Archives of Neurology, 63:991-998. 2006.
Huntington Study Group PHAROS Investigators. "At risk for Huntington disease: The PHAROS (Prospective Huntington At Risk Observational Study) cohort enrolled." Arch Neurol. 2006; 63(7): 991-6. [PubMed]
Hersch S, Erwin C and the Event Monitoring Committee of the Huntington Study Group. Monitoring reportable events and unanticipated problems: the PHAROS and PREDICT studies of Huntington?s disease. IRB: Ethics & Human Research 29(3): 11-16. 2007. [PubMed]
SIDERS, Jane "Genetic Education for Southeastern States (GenESES)"
DeCoux, V. and E.R. Bruton. Genetic Education for Human Service Professionals. Hattiesburg, Mississippi: GenESES Project, Institute for Disability Studies, University of Southern Mississippi. 2000.
SINGER, Eleanor "Beliefs about Genes & Environment as Causes of Behavior"
Singer, E. et al. "Racial and Ethnic Variations in Knowledge and Attitudes about Genetic Testing." Genetic Test. 2004 Spring; 8(1): 31-43.
Singer E, Antonucci TC, Burmeister M, Couper MP, Raghunathan TE, Van Hoewyk J. Beliefs about Genes and Environment as Determinants of Behavioral Characteristics. Forthcoming in IJPOR.
SINGER, Eleanor "Framing Effects in Causal Attributions of Behavior"
Couper MP, Tourangeau R, Conrad FG, Singer E. Evaluating the Effectiveness of Visual Analog Scales: A Web Experiment. Social Science Computer Review, 24:227-245. 2006.
Singer E, Raghunathan TE, Van Hoewyk J, Couper MP, Antonucci TC. Trends in Attitudes toward Genetic Testing 1990-2004. Forthcoming in Public Opinion Quarterly.
SINGER, Eleanor "Technology and Social Change: The Impact of Genetic Forecasting on Attitudes and Values"
Singer, E., "Public Attitudes Toward Genetic Testing." Population Research and Policy Review. 1991; 10(3): 235-255.
Singer, E., "Public Attitudes Toward Fetal Diagnosis and the Termination of Life." Social Indicators Research. 1993; 28: 117-136.
SKINNER, Debra "Culture and Family Interpretation of Genetic Disorders"
Skinner, D. Culture and Family Interpretations of Genetic Disorders Web site. [fpg.unc.edu]
Skinner, D., Schaffer, R. "Families and Genetic Diagnoses in the Genomic and Internet Age" Infants & Young Children. 2006. 19 (1): 16?24.
Raspberry K, Skinner D. Experiencing the genetic body: Parents? encounters with pediatric clinical genetics. Medical Anthropology. 26:355-391. [PubMed]
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]
SMITH, David "Ethical Guidance for Family Studies in Human Genetics"
Quaid, K.A. and M.K. Wesson. "Exploration of the Effects of Predictive Testing for Huntington Disease on Intimate Relationships." American Journal of Medical Genetics. 1995; 57: 46-51.
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]
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]
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.
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.)
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)
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.
"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.
-
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.
-
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.
-
Daly, M., J. Farmer, C. Harrop-Stein et al. "Exploring Family Relationships in Cancer Risk Counseling Using the Genogram." 393-398.
-
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.
-
Codori, A.M., G.M. Petersen, D.L. Miglioretti et al. "Attitudes toward Cancer Gene Testing: Factors Predicting Test Uptake." 345-351.
-
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.
-
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.
"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.
-
Vernon, S.W., E.R. Gritz, S.K. Peterson et al. "Intention to Learn Results of Genetic Testing for Hereditary Colon Cancer." 353-360.
-
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.
"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)"
"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]
Last Reviewed: Novemeber 2005
|
![](https://webarchive.library.unt.edu/web/20090130215201im_/http://www.genome.gov/Images/spacer2.gif) |
![](https://webarchive.library.unt.edu/web/20090130215201im_/http://www.genome.gov/Images/spacer2.gif)
|
![](https://webarchive.library.unt.edu/web/20090130215201im_/http://www.genome.gov/Images/spacer2.gif) |