Social Implications Bibliography

  1. Education

    1. "Medicine at the Crossroads: Conceiving the Future." New York: WNET/Thirteen, 1990. (8 part video series.)
    2. 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.
    3. CF Carrier Testing: The Choice is Yours. Silver Spring: Macro International, 1994. (Educational Video)
    4. 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.
    5. WGBH, "The Secret of Life" (Video series -- 8 one hour programs for PBS broadcast.)
    6. Levine, J. and D. Suzuki. The Secret of Life: Redesigning the Living World. Boston: WGBH Educational Foundation, 1993. 280p.
    7. 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.
    8. 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)
    9. 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.
    10. 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.
    11. Lapham, E.V., C. Kozma and J.O. Weiss. "Genetic Discrimination: Perspectives of Consumers." Science, 25 October 1996: 274; 621-624.
    12. The Virginia ELSI Project "The New Genetics: Education of Professionals". Colloquy I Participant Handbook. The University of Virginia. Charlottesville, VA. June 1995.
    13. GENOMUVA: The Newsletter of the Virginia ELSI Project. Multiple issues 1:1 Summer 1995.
    14. "Chances' Choices": Second Edition. Scarborough, ME: Foundation for Blood Research; 1997. 208p.
    15. Prows, C.A. and C. Hetteberg eds. Genetics Program for Nursing Faculty Newsletter."A Focus on Educational Resources." June 1998; 1(2): 1-3.
    16. Lea, Dale and J. Jenkins. Genetics in Clinical Practice: New Dimensions for Nursing and Health Care. Boston: Jones & Bartlett Publishers, 1998. 352p.

  2. Women, reproduction & breast cancer

    1. Mahowald, M.B. "Toward Gender Justice in Genetics." Proceedings of the International Social Philosophy Conference. Helsinki, Finland: University of Helsinki, August 1993.
    2. Mahowald, M.B. Women and Children in Health Care: An Unequal Majority. New York: Oxford University Press, 1993.
    3. 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.
    4. 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.
    5. Mahowald, M.B. et al. "The New Genetics and Women." The Milbank Quarterly. 1996: 74; 239-283.
    6. 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.
    7. 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.
    8. 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.
    9. Johnson, A. "Ethics and Genetics." VHL Family Forum, September 1996; 4(3): 10.
    10. Kenen, R. "Women and Genetics in Contemporary Society (WAGICS) Workshop." National Women's Health Network News (forthcoming)
    11. 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.
    12. Bernhardt, B.A., G. Geller, T. Doksum et al. "Prenatal Genetic Testing: Content of Discussions Between Obstetric Providers and Pregnant Women. Obstetrics and Geynecology. May 1998; 91(5 Part I): 648-655.
    13. Robertson, J.A. "Ethical and legal issues in human embryo donation." Modern trends. November 1995: 64(5); 885-894.
    14. Robertson, J.A. "The Case of the Switched Embryos." Hastings Center Report. Nov-Dec 1995: 25(6); 13-20.
    15. Robertson, J.A. "Genetic Selection of Offspring Characteristics." Boston University Law Review. June 1996: 76(3); 421-482.
    16. 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.
    17. 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)
    18. 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.
    19. Botkin J, Croyle RT, Smith KR, Baty B, Lerman C, Goldgar D, Ward J, Flick B, Nash J. "A model protocol for evaluating the behavioral and psychosocial effects of BRCA1 testing." JNCI. 1996, 88:872-882.
    20. Croyle R, Smith K, Botkin J, Baty B, Nash J. "Psychological Responses to BRCA1 Mutation Testing: Preliminary Findings." Health Psychology. 1997:16:63-72.
    21. Baty JB, VL Venne, J McDonald, RT Croyle, C Halls, JE Nash, JR Botkin. "BRCA1 Testing: Genetic Counseling Protocol Development and Counseling Issues." J Genetic Counseling. June 1997: 6(2).
    22. 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.
    23. Burke, W., N. Press, and L. Pinsky. "Breast Cancer Genetics from a Primary Care Perspective."Cancer. 1997; 80(3):621-626.
    24. 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.
    25. 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.
    26. Bars J., J. Hull and W. Burke. "Breast Cancer." Genline, Ed. Roberta Pagon. 1998. GeneClinics
    27. Koenig, B.A. and N.A. Press. "Desperately seeking narratives of genetic testing for breast cancer." Bioethics in Context. Ed. Barry Hoffmaster. Oxford University Press. (To be published)
    28. 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.
    29. 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)
    30. Benkendorf, J.I., 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.
    31. 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.
    32. Lerman C. "Psychological aspects of genetic testing: Introduction to the Special Issues." Health Psychology. 1997; 16: 3-7.
    33. Lerman, C. "Translational Behavioral Research in Cancer Genetics." Preventive Medicine. 1997; 26:S65-S69.
    34. 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.
    35. Patenaude, A.F. "Psychosocial impact of familial cancers." In: Inherited Tumors, D. Malkin, ed. Springer-Verlag. (In press)
    36. Patenaude, A.F. "The genetic testing of children for cancer susceptibility: ethical, legal, and social issues." Behavioral Sciences and the Law. (In press)
    37. 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.
    38. Biesecker, B.B. and J.E. Garber. "Testing and counseling adults for heritable cancer risk." J. Natl. Cancer Inst. 1995; 17: 115-118.
    39. Geller, G., B.A. Bernhardt, K.A. Helzlsouer et al. "Informed consent and BRCA1 testing." Nature Genetics. 1995; 11: 364.
    40. Geller, G., M. Strauss, B.A. Bernhardt, N.A. Holtzman. "Decoding informed consent: Insights from women regarding genetic testing for breast cancer susceptibility." Hastings Center Report. 1997; 27(2): 28-33.
    41. 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.
    42. 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.
    43. 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.
    44. Offit, K. Clinical Cancer Genetics: Risk Counseling & Management. New York: Wiley-Liss, Inc., 1998. 419p.
    45. 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. (In press)
    46. 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)
    47. Miller, S.M., M.A. Diefenbach, C.Y. Fang and M. Daly. "Monitoring processing styles: Implications for interventions." In Baum and B. Andersen (Eds.), Psychosocial interventions and cancer. Washington, D.C.: American Psychological Association. (In press)
    48. 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)
    49. 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)

  3. Counseling, Screening & Testing

    1. Asch, D. et al. "Clarification Needed to Cystic Fibrosis Model." American Journal of Obstetrics and Gynecology. 1993: 168; 1358-1359.
    2. Asch, D. et al. "Genetic Screening for Reproductive Planning: Methodological and Conceptual Issues in Policy Analysis." American Journal of Public Health. May 1996; 86(5): 684-690.
    3. 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.
    4. Asch, D. and J.C. Hershey. "Why Some Health Policies Don't Make Sense at the Bedside." Annals of Internal Medicine. 1995; 122: 846-850.
    5. Biesecker, B.B. and J.E. Garber. "Testing and counseling adults for heritable cancer risk." J. Natl. Cancer Inst. 1995; 17: 115-118.
    6. Callanan, N.P. et al. "CF Carrier Testing: Experience of Relatives." Journal of Genetic Counseling. 1995: 4(2); 83-95.
    7. 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.
    8. 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.
    9. Campbell, P.W. et al. "Detection of Pseudomonas (Burkholderia) Cepacia Using Species-Specific PCR." Pediatric Pulmonology. 1995: 20; 44-49.
    10. Clayton, E.W. et al. "Written educational materials for CF carrier testing." Pediatric Pulmonology-- Supplement. 1992: 8; 235.
    11. 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.
    12. 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.
    13. Clayton, E.W. et al. "Interest and Demand for Cystic Fibrosis Carrier Screening in Nonpregnant Couples." American Journal of Human Genetics. 1994: Supplement 55; 1706.
    14. Cystic Fibrosis. (Education videotape on cystic fibrosis testing--English/Spanish). Los Angeles: The UCLA Cystic Fibrosis Project, 1992.
    15. "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.
    16. 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)
    17. 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.
    18. Fanos, J.H. Sibling Loss. Mahwah, New Jersey: Lawrence Erlbaum Associates, Inc; 1996. 182pp.
    19. 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.
    20. Fanos, J.H. and J. Johnson. "Perception of Carrier Status by Cystic Fibrosis Siblings." American Journal of Human Genetics. 1995: 57(2); 431-438.
    21. Fanos, J.H. and J. Johnson. "Still Living with Cystic Fibrosis: The Well Sibling Revisited." Pediatric Pulmonology. September 1992: Supplement 8; 228-229.
    22. 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.
    23. 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.
    24. Fine, B. and M. Koblenz. "Humanizing Genetic Testing: Clinical Applications of New DNA Technologies." Northwestern University. April 1994. (Course manual and video)
    25. 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.
    26. 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.
    27. 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.
    28. Hannig, V.L. et al. "Efficacy of Written and Video Educational Approaches for Cystic Fibrosis Carrier Screening." American Journal of Human Genetics. 1994: Supplement 55; 815.
    29. Hannig, V.L. et al. "Ethical Dilemmas in CF Carrier Testing and Counseling: Impact of the Human Gene Project." American Journal of Human Genetics. October 1992: Supplement 51;A140.
    30. 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.
    31. "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.
    32. Loader, S. et al. "Cystic Fibrosis Carrier Population Screening in the Primary Care Setting." American Journal of Human Genetics. 1996: 59; 234-247.
    33. 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.
    34. Markel, H. "Knocking out the Cholera: Cholera, Class, and Quarantines in New York City, 1892." Bull. Hist. Med.. 1995; 69: 420-457.
    35. Markel, H. Quarantine! East European Jewish Immigrants and the New York City Epidemics of 1892. Baltimore, Maryland: The Johns Hopkins University Press. 1997. 262p.
    36. Markel, H. "The Stigma of Disease: Implications of Genetic Screening." American Journal of Medicine. August 1992: 93; 209-15.
    37. 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
    38. Raskin, S. et al. "Cystic Fibrosis Genotyping by Direct PCR Analysis of Guthrie Blood Spots." PCR Methods and Applications. 1992: 2; 154-156.
    39. 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.
    40. Raskin S. and J.A. Phillips, III. "Genetic Diagnosis of Cystic Fibrosis in the Perinatal Period." Tennessee Perinatal Association Newsletter. 1992: 2; 6.
    41. Raskin, S. et al. "Utility of Internal Markers to Improve the Accuracy of Cystic Fibrosis (CF) Genotype Analysis." Biotechniques. 1992: 13; 372-374.
    42. 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.
    43. Rowley, P.T., S. Loader, S. and J.C. Levenkron. "Cystic Fibrosis Carrier Population Screening: A Review." Genetic Testing. 1997: 1(1); 53-59.
    44. Tatsugawa, Z.H. et al. "Attitudes Toward CF Genetic Carrier Screening for Cystic Fibrosis Among Pregnant Women: The Role of Health Beliefs and Avoidant Coping Style." (IN Press --1997)
    45. 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.
    46. 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.
    47. 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)
    48. 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.
    49. 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.

  4. Sociology, anthropology, history & culture

    1. 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.
    2. 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.)
    3. 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.
    4. 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.
    5. Dreyfus, R.C., and D. Nelkin. "The Jurisprudence of Genetics." Vanderbilt Law Review. 1992; 45(2):313-348.
    6. Nelkin, D. "Prospecting for Genes." Scientist. November 23, 1992.
    7. 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.
    8. Nelkin, D. "The Grandiose Claims of Geneticists." Chronicle of Higher Education. March 3, 1993: B1-B2.
    9. Nelkin, D. "After Daubert: The Relevance and Reliability of Genetic Information." Cardozo Law Review. April 1994: 15(6-7); 2119-2128.
    10. Nelkin, D. "Promotional Metaphors and Their Popular Appeal." Public Understanding of Science. 1994: 3; 25-31.
    11. Nelkin, D. "Forms of Intrusion: Comparing Resistance to Information Technology and Biotechnology." In: Resistance to Technology, ed. Martin Bauer. Cambridge: Cambridge University Press; 1995.
    12. 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.
    13. 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.
    14. Nelkin, D. and M.S. Lindee. The DNA Mystique: The Gene as a Cultural Icon. New York: W.H. Freeman and Company, 1995. 276p.
    15. King, M.C. "An Application of DNA Sequencing to a Human Rights Problem." In: Molecular Genetic Medicine, ed. Friedman. 1991: 117-131.
    16. Ginther, C.; L. Issel-Tarver; and M.C. King. "Identifying Individuals by Sequencing Mitochondrial DNA from Teeth." Nature Genetics. October 1992: 2; 135-138.
    17. Graber, G.; J. Collmann; and S. Dombrowski. "Human Gene Therapy: A Handbook for Community Discussion." Knoxville: University of Tennessee, 1993. (Accompanying video)
    18. The Human Genome Project: A Choices and Challenges Forum. Blacksburg, Virginia: Virginia Polytechnic Institute, April 1992. (Transcript and Videotape of Plenary session)
    19. MCET. The Human Genome Project: Exploring the Human and Scientific Dimensions. (Series of 7 Videos--core of bi-weekly elective biology course). Boston: MCET.
    20. Blatt, R. "The Human Genome Project: Exploring the Scientific and Humanistic Dimensions." (Curriculum Materials). Boston: MCET.
    21. 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)
    22. 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.
    23. 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.
    24. 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. September 1993; 2(3): 213-229.
    25. Punales-Morefon, D. and R. Rapp. "Ethnocultural Diversity and Genetic Counseling Training: The Challenge for a Twenty-first Century." Journal of Genetic Counseling. September 1993; 2(3): 155-158.
    26. Rapp, R. "Amniocentesis in Sociocultural Perspective." Journal of Genetic Counseling. September 1993; 2(3): 183-196.
    27. Smith, A.C.M. "Update on Master's Genetic Counseling Training Programs: Survey of Curriculum Content and Graduate Analysis Summary." Journal of Genetic Counseling. September 1993; 2(3): 197-211.
    28. Smith, S.C.; N.S. Warren; and L. Misra. "Minority Recruitment into the Genetic Counseling Profession." Journal of Genetic Counseling. September 1993; 2(3): 171-181.
    29. Weil, J. and I. Mittman. "A Teaching Framework for Cross-Cultural Genetic Counseling." Journal of Genetic Counseling. September 1993; 2(3): 159-169.

  5. Cystic Fibrosis

    1. Asch, D. and J.C. Hershey. "Why Some Health Policies Don't Make Sense at the Bedside." Annals of Internal Medicine. 1995; 122: 846-850.
    2. Asch, D. et al. "Genetic Screening for Reproductive Planning: Methodological and Conceptual Issues in Policy Analysis." American Journal of Public Health. May 1996; 86(5): 684-690.
    3. Fanos, J.H. and J. Johnson. "Still Living with Cystic Fibrosis: The Well Sibling Revisited." Pediatric Pulmonology. September 1992: Supplement 8; 228-229.
    4. 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.
    5. Fanos, J.H. and J. Johnson. "Perception of Carrier Status by Cystic Fibrosis Siblings." American Journal of Human Genetics. 1995: 57(2); 431-438.
    6. 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.
    7. Fanos, J.H. Sibling Loss. Mahwah, New Jersey: Lawrence Erlbaum Associates, Inc; 1996. 182pp.
    8. 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.
    9. Callanan, N.P. et al. "CF Carrier Testing: Experience of Relatives." Journal of Genetic Counseling. 1995: 4(2); 83-95.
    10. 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.
    11. 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)
    12. 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.
    13. Clayton, E.W. et al. "Written educational materials for CF carrier testing." Pediatric Pulmonology-- Supplement. 1992: 8; 235.
    14. 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.
    15. 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.
    16. Hannig, V.L. et al. "Ethical Dilemmas in CF Carrier Testing and Counseling: Impact of the Human Gene Project." American Journal of Human Genetics. October 1992: Supplement 51;A140.
    17. Raskin, S. et al. "Cystic Fibrosis Genotyping by Direct PCR Analysis of Guthrie Blood Spots." PCR Methods and Applications. 1992: 2; 154-156.
    18. Raskin S. and J.A. Phillips, III. "Genetic Diagnosis of Cystic Fibrosis in the Perinatal Period." Tennessee Perinatal Association Newsletter. 1992: 2; 6.
    19. Raskin, S. et al. "Utility of Internal Markers to Improve the Accuracy of Cystic Fibrosis (CF) Genotype Analysis." Biotechniques. 1992: 13; 372-374.
    20. 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.
    21. "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.
    22. Clayton, E.W. et al. "Interest and Demand for Cystic Fibrosis Carrier Screening in Nonpregnant Couples." American Journal of Human Genetics. 1994: Supplement 55; 1706.
    23. Hannig, V.L. et al. "Efficacy of Written and Video Educational Approaches for Cystic Fibrosis Carrier Screening." American Journal of Human Genetics. 1994: Supplement 55; 815.
    24. 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
    25. 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.
    26. Campbell, P.W. et al. "Detection of Pseudomonas (Burkholderia) Cepacia Using Species-Specific PCR." Pediatric Pulmonology. 1995: 20; 44-49.
    27. 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.
    28. "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.
    29. CF Carrier Testing: The Choice is Yours. Silver Spring: Macro International, 1994. (Educational Video
    30. 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.
    31. 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.
    32. 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.
    33. Tatsugawa, Z.H. et al. "Attitudes Toward CF Genetic Carrier Screening for Cystic Fibrosis Among Pregnant Women: The Role of Health Beliefs and Avoidant Coping Style." (IN Press --1997)
    34. Cystic Fibrosis. (Education videotape on cystic fibrosis testing--English/Spanish). Los Angeles: The UCLA Cystic Fibrosis Project, 1992.
    35. 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.
    36. Loader, S. et al. "Cystic Fibrosis Carrier Population Screening in the Primary Care Setting." American Journal of Human Genetics. 1996: 59; 234-247.
    37. Rowley, P.T., S. Loader, S. and J.C. Levenkron. "Cystic Fibrosis Carrier Population Screening: A Review." Genetic Testing. 1997: 1(1); 53-59.
    38. Asch, D. et al. "Clarification Needed to Cystic Fibrosis Model." American Journal of Obstetrics and Gynecology. 1993: 168; 1358-1359.
    39. 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.
    40. 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.
    41. Boyle, P.J. et al. "Public Priorities for Genetic Services." Hastings Center Report. May-June 1995; 25(3, Special Supplement)
    42. 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.
    43. 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.
    44. 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.
    45. 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.
    46. Cystic Fibrosis Carrier Testing: The Choice is Yours. (An educational videotape on cystic fibrosis testing). Baltimore: The Johns Hopkins University, 1992.

  6. Ethnic

    1. Browner, C.H. and H.M. Preloran. "Para sacarse la espina (To Get Rid of Doubt): Mexican Immigrant Couples and Amniocentesis." In: Localizing and Globalizing Reproductive Technologies. A. Saetnan, N. Oudshoorn, and M. Kirejczyk, eds. Columbus: Ohio State University Press.
    2. Browner, C.H. and H.M. Preloran. "The Effect of Male Partners on Latinas' Amniocentesis Decisions. Journal of Genetic Counseling. (accepted for publication)
    3. Eng, C.M., C. Schechter, Robinowitz et al. "Prenatal Genetic Carrier Testing Using Triple Disease Screening." JAMA. October 1997; 278(15): 1268-1272.
    4. 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.
    5. 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.
    6. 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.
    7. Preloran, H.M. and C.H. Browner. "Rol de la tradicion en las practicas del embarazo: efectos de la informacion genetica entre mexicanas residentes en Estados Unidos." Revista de Investigaciones Folkloricas. 12:67-75.
    8. Publications from this grant. Smith, E.J. and W.J. Sapp eds. Plain Talk about the Human Genome Project. Tuskegee, Alabama: Tuskegee University. 1997.

  7. Cancer

    1. 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)
    2. Petersen, G.M. "Genetic epidemiology of colorectal cancer." European Journal of Cancer. 1995; 31A: 1047-50.
    3. Petersen, G.M. "Genetic counseling and predictive testing for colorectal cancer risk." International Journal of Cancer. 1996; 69: 53-54.
    4. 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.

  8. Technology

    1. 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.)
    2. Fader, B. "Ethics and the Use of Genetic Information" Tough Questions by Student Pugwash USA. Conference Report. Summer 1992: 7-11.
    3. 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)
    4. Hilgartner, S. "Biomolecular Databases: New Communication Regimes for Biology?" Science Communication. December 1995: 17(2): 240-263.
    5. 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.
    6. 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.
    7. Hilgartner, S. "Data Access Policy in Genome Research." In : Private Science, ed. A. Thackray. University of Pennsylvania Press (Forthcoming).
    8. Hilgartner, S. And S.I. Brandt-Rauf. "Controlling Data and Resources: Access Strategies in Molecular Genetics." In: Yearbook in Sociology of the Sciences, eds. E. Mendelsohn et al. (Forthcoming).
    9. Hoffman, L., ed. Proceedings of the Second Conference on Computers, Freedom, and Privacy. New York: Association for Computing Machinery, Inc., 1993. Singer, E., "Public Attitudes Toward Genetic Testing." Population Research and Policy Review. 1991: 10(3); 235-255.
    10. Singer, E., "Public Attitudes Toward Fetal Diagnosis and the Termination of Life." Social Indicators Research. 1993: 28; 117-136.
    11. Stemerding D. and S. Hilgartner. "Means of Coordination in Making Biological Science: On the Mapping of Plants, Animals, and Genes." In: Constructing Socio-technical Order, eds. C. Disco and B.J.R. van de Meulen. Hawthorne, NY: Aldine de Gruyter (Forthcoming).
    12. Visions for a Sustainable World: A Conference on Science, Technology and Social Responsibility. Conference Report. Washington, DC: Student Pugwash USA, June 1992.