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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, 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 Apr; 8 (4 Pt 2):385-92.

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) Kluwer Academic/ Plenum Publishers, New York, 1999: 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) Kluwer Academic/ Plenum Publishers, New York, 1999: 41-56.

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BOTKIN, Jeffrey R. "Ensuring Confidentiality in the Publication of Pedigrees"

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BULGER, Ruth "Predicting Future Disease: Issues in the Development, Application, and Use of Tests for Genetic Disorders"

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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.

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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. (in press).

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

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BURNS, Joan "Partnership for Genetic Services"

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CALLAHAN, Daniel "The Genetic Prism: Understanding Health and Responsibility"

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CAPLAN, Arthur "Ethics, Values, Professional Responsibilities"

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CHURCHILL, Larry R. "Research, Treatment and Informed Consent in Gene Therapy"

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CITRIN, Toby. "Genome Technology & Reproduction - Values & Public Policy"

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CONDIT, Celeste "An Empirical Study of Change in Public Genetic Discourse"

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COWAN, Ruth "History of Prenatal Diagnosis"

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Duster, T. "The Prism of Heritability and the Sociology of Knowledge," pp. 119-30 in Naked Science: Anthropological Inquiry into Boundaries, Power, and Knowledge, ed. Laura Nader. New York; Routledge Press, 1996.

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GARBER, Judy E. "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)

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GELLER, Gail "Prenatal Genetic Testing--Provider-Patient Communication"

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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.



GELLER, Gail "Minors At-Risk of Future Disease: Their Role in Research."

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GERT, Bernard "Ethical and Legal Studies Relating to the Program to Map and Sequence The Human Genome"

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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 J. "Breast Cancer Gene Education--Computer vs Practitioner"

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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.

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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, ed. Catherine Kohler Riessman. 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.

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.

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. 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.H. et al. "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.

Cystic Fibrosis. (Education videotape on cystic fibrosis testing--English/Spanish). Los Angeles: The UCLA Cystic Fibrosis Project, 1992.

HADDOW, Paula "Update and Dramatization of a Genetics Curriculum"

"Chances' Choices": Second Edition. Scarborough, ME: Foundation for Blood Research; 1997. 208p.

HALL, Mark A. "Effects of Restricting Insurers' Use of Genetic Information"

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. 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.

HILGARTNER, Stephen "Organizing the HGI: Social Impact and Technology Design"

Hilgartner, S. "Biomolecular Databases: New Communication Regimes for Biology?" Science Communication. December 1995: 17(2): 240-263.

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. "Data Access Policy in Genome Research." In : Private Science, ed. A. Thackray. University of Pennsylvania Press, April 1998. 304p.

Hilgartner, S. And S.I. Brandt-Rauf. "Controlling Data and Resources: Access Strategies in Molecular Genetics." In: The Practices of Human Genetics (Sociology of the Sciences, V. 21), eds. M. Fortun and E. Mendelsohn. Kluwer Academic Publishers, March 1999.

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 B. "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 A. "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 A "Ethical and Policy Issues in Cystic Fibrosis Screening"

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.

Cystic Fibrosis Carrier Testing: The Choice is Yours. (An educational videotape on cystic fibrosis testing). Baltimore: The Johns Hopkins University, 1992.

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 T. "Anticipating Enhancement: Ethical, Legal and Social Issues"

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. "Can Prevention be Distinguished from Enhancement in Genetic Medicine?" Journal of Medicine and Philosophy. 1997; 22: 125-142.

Juengst, ET and L. Walters. "Ethical Issues in Human Gene Transfer Research." p 691-712, in The Development of Human Gene Therapy. Cold Spring Harbor, NY: Cold Spring Harbor Laboratory Press, 1999.

Juengst, ET. "What Does Enhancement Mean?" p29-47 in Enhancing Human Traits: Ethical and Social Implications, E. Parens ed. Washington, DC: Georgetown University Press, 1998.

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. Nov-Dec 1999; 83(3): 124-130.

KARJALA, Dennis "A Legal Research Agenda for the Human Genome Initiative"

Karjala, D.S. "A Legal Research Agenda for the Human Genome Initiative." Jurimetrics. Winter 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.

KEVLES, Daniel J. and HOOD, Leroy "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.

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, ed. Friedman. 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.



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.

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)

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.

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)

o "The HuGEM Project: Overview of the Human Genome Project and Its Ethical, Legal and Social Issues." (19 minutes)
o "The HuGEM Project: Genetic Testing Across the Lifespan" (30 minutes)
o "The HuGEM Project: Issues of Genetic Privacy and Discrimination" (45 minutes)
o "The HuGEM Project: Opportunities and Challenges of the Human Genome Project" (24 minutes)
o "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.

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.

LERMAN, Caryn. "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.

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.

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.

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.

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.

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. (In press)

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. "Toward Gender Justice in Genetics." Proceedings of the International Social Philosophy Conference. Helsinki, Finland: University of Helsinki, August 1993.

Mahowald, M.B. Women and Children in Health Care: An Unequal Majority. New York: Oxford University Press, 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.

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.

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.

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.

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. Quarantine! East European Jewish Immigrants and the New York City Epidemics of 1892. Baltimore, Maryland: The Johns Hopkins University Press. 1997. 262p.

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.

MEHLMAN, Maxwell "Access to the Genome: Justice at the Frontier of Science"

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. Botkin and A. Scarrow. "Coverage of genetic technology under national health reform." Am J Hum Genet. 1994;55:1054-1060.

Botkin J. "Fetal privacy and confidentiality." Hastings Center Report. 1995;25(5):32-40.

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 F. "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.



MILLER, Suzanne M. "Facilitating Well-Informed Decisions for BRCA Testing."

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.

Miller, S.M. and M.A. Diefenbach. "Stress and coping in the cancer context." In M.Lewis and J. Haviland (Eds.), Handbook of Emotion. NY: Plenum Press. (In press February 2000)

Miller, S.M., M.A. Diefenbach, C.Y. Fang and M. Daly. "Monitoring processing styles: Implications for interventions." In A. Baum and B. Andersen (Eds.), Psychosocial interventions and cancer. Washington, D.C.: American Psychological Association. (In press)

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.), Stress and soothing. NJ: Lawrence Erlbaum. (In press)

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.

MURRAY, Jeff and Robert WEIR "ELSI Core for the Cooperative Human Linkage Center (CHLC)"

Weir, 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 "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. "Prospecting for Genes." Scientist. November 23, 1992.

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. "The Grandiose Claims of Geneticists." Chronicle of Higher Education. March 3, 1993: B1-B2.

Nelkin, D. "After Daubert: The Relevance and Reliability of Genetic Information." Cardozo Law Review. April 1994: 15(6-7); 2119-2128.

Nelkin, D. "Promotional Metaphors and Their Popular Appeal." Public Understanding of Science. 1994: 3; 25-31.

Nelkin, D. "Forms of Intrusion: Comparing Resistance to Information Technology and Biotechnology." In: Resistance to Technology, ed. Martin Bauer. 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.

OFFIT, Kenneth. "Impact of Genetic Counseling and Testing for Breast Cancer"

Offit, K. Clinical Cancer Genetics: Risk Counseling & Management. New York: Wiley-Liss, Inc., 1998. 419p.



PAGE, David. "Human Genome Project: Science, Law, and Social Change."

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PAGON, Roberta. "GeneClinics: Medical Genetics Knowledge Base"

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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.

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.

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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.

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.

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

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.

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. "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 G. "Ethics, Genetics and Alzheimer Disease"

Post, S.G. The Moral Challenge of Alzheimer Disease. Baltimore: The Johns Hopkins University Press, December 1995.

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.

Relkin, Norman et al. "Apolipoprotein E Genotyping in Alzheimer's Disease: A Consensus Statement." Lancet. 1996; 347(9008): 1091-1095.

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., 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. 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. 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., "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., "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., "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, ed. by Serge Gauthier. London: Martin Dunitz, Ltd. , October 1998.

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., "A Response to the Stanford Analysis of Genetic Testing in Alzheimer Disease," Kennedy Institute of Ethics Journal (forthcoming).

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).

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 A. "Summer Genetics Program for Nursing Faculty"

Prows, C.A. and C. Hetteberg eds. Genetics Program for Nursing Faculty Newsletter."A Focus on Educational Resources." June 1998; 1(2): 1-3.

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. (Accepted for publication)

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): 1-5

RAU, Richard "DNA Forensics Science: An Update--Supplement" (See also ZABORSKY)

National Research Council. The Evaluation of Forensic DNA Evidence. Washington, DC: National Academy Press, 1996.

ROBERTSON, John A. "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.

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

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.

Billings, P.A. et al. "Case Study: But Is He Genetically Diseased?" Hastings Center Report. Jul-Aug 1992: 22(4)Special Supplement; S18-20.

Health Law Issue. "Symposium: Legal and Ethical Issues Raised by the Human Genome Project." University of Houston Law Review. Spring 1992: 29(1).

ROWLEY, Peter "Testing and Counseling for Cystic Fibrosis Mutations"

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.

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 "Research and Application of Genetics Blood Group: 1900-1950"

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.

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.

SMITH, David H. "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 J. "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,"

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 (In Press)

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.

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 92-115), 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.

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, ed. S. Aronowitz, B. Martinsons, and M. Menser. 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"

Wachbroit, R. "Rethinking Medical Confidentiality: The Impact of Genetics." Suffolk University Law Review. Winter 1993: 27(4); 1391-1410.

Wasserman, D. "Disability, Discrimination, and Fairness." Report from the Institute for Philosophy & Public Policy. 1993: 13; 7-12. 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.

WALTERS, Leroy "National Information Resource on Ethics and Human Genetics"

McCarrick, P.M. "Scope Note 22: Genetic Testing and Genetic Screening." Kennedy Institute of Ethics Journal. September 1993; 3(3): 333-354. (Updated in 1997). Available online at: http://www.georgetown.edu/research/nrcbl/scopenotes/sn22.htm.

Coutts, M.C. "Scope Note 24: Human Gene Therapy." Kennedy Institute of Ethics Journal. March 1994; 4(1): 68-83. (Updated in 1998) Available online at: http://www.georgetown.edu/research/nrcbl/scopenotes/sn24.htm.

Coutts, M.C. and P.M. McCarrick. "Scope Note 28: Eugenics." Kennedy Institute of Ethics Journal. June 1995; 5(2). (Updated June 1997) Available online at: http://www.georgetown.edu/research/nrcbl/scopenotes/sn28.htm.

Durfy, S.J. and A.E. Grotevant. "Scope Note 17: The Human Genome Project."Kennedy Institute of Ethics Journal. (Originally published in December, 1991 and updated in 1998). Available online at: http://www.georgetown.edu/research/nrcbl/scopenotes/sn17.htm.

Walters, L. and T.J. Kahn eds. Bibliography of Bioethics, Volume 22. Washington, DC: Kennedy Institute of Ethics, Georgetown University, 1995. 761p.

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 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.

National Information Resource on Ethics & Human Genetics web site.

WASSERMAN, David "Genetic Factors in Crime--Findings, Uses and Implications"

Wasserman, D. "Research into Genetics and Crime: Consensus and Controversy." Politics and the Life Sciences. March 1996: 15(1); 107-109.

WERTZ, Dorothy C. "Ethics and Genetics: A Survey of Approaches in the US and Canada"

Wertz, DC. "Ethical and Legal Implications of the New Genetics: Issues for Discussion." Social Science and Medicine. 1992: 35(4); 495-505.

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. "A Critique of Some Feminist Challenges to Prenatal Diagnosis." Journal of Women's Health. 1993: 2(2); 173-188.

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. "Genetic Testing for Children and Adolescents: Who Decides?" JAMA. September 1994: 272(11); 875-881.

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. "Professional Perspectives: A Survey of Canadian Providers." Health Law Journal. 1995; 3: 59-130.

Wertz, D.C. "Ethics." In: Pediatric Neuropathology, ed. S. Duckett. 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, Dorothy C. "Geneticists Approach Ethics: An International Survey"

Wertz, D.C. and J.C. Fletcher. "Geneticists Approach Ethics: An International Survey." Clinical Genetics. 1993: 43(2); 104-110.

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. "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. "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, DC. "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, DC. "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, ed. A.J. Clark. 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. (In Press)

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

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 R. "An Evaluation of the Application of DNA Technology in Forensic Science" (See RAU for update)

National Research Council. DNA Technology in Forensic Science. Washington, DC: 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

"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.

"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-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.

"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 Cystic Fibrosis Studies Consortium (CFSC) and Consensus Development Conference
Project Start Date: 9/30/91. Conference Date: April 14-16, 1997.

Genetic Testing for Cystic Fibrosis. NIH Consensus Statement 1997. April 14-16;15(4):1-37. Available online at: http://odp.od.nih.gov/consensus/cons/106/106_intro.htm.

"Genetic Testing for Cystic Fibrosis" April 14-16, 1997. NIH Consensus Development Conference Program and Abstracts Book. Available online at: http://www.nlm.nih.gov/pubs/cbm/cystic_fibrosis.html.

Love, C.B. and E.J. Thomson. "Genetic Testing for Cystic Fibrosis: January 1989 through February 1997." Current Bibliographies in Medicine 97-2 . Bethesda, Maryland: National Library of Medicine, March 1997. 78p. Available online at: http://www.nlm.nih.gov/pubs/cbm/cystic_fibrosis.html.



"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.

"NIH Cancer Genetic Studies Consortium (CGSC)"
Project Start Date: 9/30/94

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.

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.

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).

Bowen, DJ, A. Farkas and S.W. Vernon. "Psychosocial Issues in Cancer Genetics: From the Laboratory to the Public." 326-328.

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.

Codori, A.M., G.M. Petersen, D.L. Miglioretti et al. "Attitudes toward Cancer Gene Testing: Factors Predicting Test Uptake." 345-351.

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.

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.

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.

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.

"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

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.

Rothenberg, K.H. "Genetic Information and Health Insurance: State Legislative Approaches." Journal of Law, Medicine & Ethics. 1995: 23; 312-319.

"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. Available online at: http://www.nhgri.nih.gov/ELSI/TFGT_final/.

"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.



"Hereditary Hemochromatosis: Gene Discovery and Policy Meeting"

Burke, W., E. Thomson, M.J. Khoury et al. "Hereditary Hemochromatosis: Gene Discovery and Its Implications for Population-Based Screening." JAMA. 1998; 280: 172-178.



"Bioethics Education Materials and Resources Subcommittee (BEMARS)"

Love, C., E. Thomson and C. Royal. "Ethical Issues in Research Involving Human Participants." Current Bibliographies in Medicine 99-3. Bethesda, Maryland: National Library of Medicine, May 1999: 4650 citations. Available online at: http://www.nlm.nih.gov/pubs/cbm/hum_exp.html