NIH-DOE Working Group on the Ethical, Legal, and Social Implications of Human Genome Research.Genetic information and health insurance: report of the task force on genetic information and insurance. (National Center for Human Genome Research NIH Publication No. 93-3686, 1993).
Holtzman, L., Fullarton,, J. & Motulsky, A.. (eds). Assessing Genetic Risk (National Academy Press, Washington D.C., 1994).
House of Commons, Science and Technology Committee. Human Genetics: The Science and its Consequences (HMSO, London, 1995).
Society of Human Genetics. Statement of the American Society of Human Genetics on genetic testing for breast and ovarian cancer predisposition. Am, J. Hum. Genet. 55, i–iv (1994).
Plan on Breast Cancer. Position Paper: Heriditary Susceptibility Testing for Breast Cancer (NAPBC, Washington, D.C., 1996).
“Portability and Accountability Act of 1996” US Public Law 104–191.
Hudson, K., Rothenberg, K., Andrews, L., Kahn, M. & Collins, F. Genetic discrimination and health insurance: an urgent need for reform. Science 270, 391–393 (1995).
U.S.Equal Employment Oppertunity Commission. Number 915.002. March 14, 1995).
AAAS Directorate for Science and Policy Programs. Report of a Conference on Ethical and Legal Aspects of Pedigree Research. (AAAS, Washington, D.C., 1993).
Knoppers, B. & Laberge, C. Research and stored tissues: persons as sources, samples as persons? J. Am. Med Assoc. 274, 1806–1807 (1995).
Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Protecting Human Subjects (U.S. Government Printing Office, Washington D.C, 1981).
Health and Human Services Regulations on Protection of Human Subjects. 45 Code of Federal Regulations, 46; 46 Federal Register, 8386 (1981).
Bloch, M. & Hayden, M. Predictive testing for Huntington's Disease in childhood: challenges and implications. Am. J. Hum. Genet. 46, 1–4 (1990).
Biesecker, B. et al. Genetic counseling for families with inherited susceptibility to breast and ovarian cancer. J. Am. Med. Assoc. 269, 1970–1974 (1993).
NIH Office of Protection from Research Risaks, in Human Genetic Research. in Protecting Human Research Subjects: Institutional Review Board Guidebook. Chapter 5H. (U.S. Government Printing Office, Washington, D.C., 1993).
Juengst, E. The ethics of prediction: genetic risk and the physician-patient relationship. Genome Sci. Technol. 1, 21–36 (1995).
Blatt, R. & Weiss, J. Informed consent: participation in genetic research studies. Genet Resour. 7, 32–36 (1993).
45 Code of federal regulations. 46.116>.
Annas, G., Glantz, L. & Roche, P. The Genetic Privacy Act and Commentary (Health Law Department, Boston University School of Public Health, Boston, 1995).
Clayton, E. et al. Informed consent for genetic research on stored tissue samples. J. Am. Med. Assoc. 274, 1786–1792 (1995).
The American Society of Human Genetics. ASHG Report: Statement on informed consent for genetic research. Am J. Hum. Genet. 59, 471–474 (1996).
Oregon stat.659.036,659.277 (1995).
New York Senate Bill 4239. Signed by Governor Pataki on August 8, 1996).
Moore v. Regents of the University of California 793 P. 2d 479 (1990).
Earley, C. & Strong, L. Certificates of confidentiality: a valuable tool for protecting genetic data. Am J. Hum. Genet. 57, 727–731 (1995).
Society of Human Genetics Board of Directors and The American College of Medical Genetics Board of Directors. Points to consider: ethical, legal and psychosocial implications of genetic testing in children and adolescents. Am. J. Hum. Genet. 57, 1233–1241 (1995).
45 Code of Federal Regulations 46 408(a) (1991).
45 Code of Federal Regulations 46.116(d) (1991).