Privacy in genetics research

Science

Volumn 285, Issue 5432, 1999, Pages 1359-1361

  Fuller, B P ^a   Ellis Kahn, M J ^a   Barr, P A ^a   Biesecker, L ^a   Crowley, E ^a   Garber, J ^a   Mansoura, M K ^a   Murphy, P ^a   Murray, J ^a   Phillips, J ^a   Rothenberg, K ^a   Rothstein, M ^a   Stopfer, J ^a   Swergold, C ^a   Weber, B ^a   Collins, F S ^a   Hudson, K L ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

MEDICAL GENETICS; MEDICAL INFORMATION; PRIORITY JOURNAL; PRIVACY; RESEARCH; SHORT SURVEY;

BIOMEDICAL AND BEHAVIORAL RESEARCH; FEDERAL GOVERNMENT; GENETIC INFORMATION; GENETIC RESEARCH; GENETICS AND REPRODUCTION; GOVERNMENT REGULATION; RESEARCH SUBJECTS; STANDARDS; UNITED STATES;

BIOETHICS; CONFIDENTIALITY; DISCLOSURE; ETHICS COMMITTEES, RESEARCH; FEDERAL GOVERNMENT; GENETIC PRIVACY; GENETIC RESEARCH; GENETICS, MEDICAL; GOVERNMENT REGULATION; HUMANS; INFORMED CONSENT; PRIVACY; RESEARCH; RESEARCH SUBJECTS; UNITED STATES;

EID: 0345493890     PISSN: 00368075     EISSN: None     Source Type: Journal    
DOI: 10.1126/science.285.5432.1359     Document Type: Short Survey

References (29)

1. The NAPBC is a public-private partnership designed to stimulate progress in eradicating breast cancer by advancing knowledge, research, policy, and services.
2. Department of Defense Directive 1332.
3. L. N. Geller et al., Science Eng. Ethics 2, 71 (1996).
4. See K. L. Hudson, K. H. Rothenberg, L. B. Andrews, M. J. Ellis Kahn, F. S. Collins, et al., Science 270, 391 (1995); K. Rothenberg et al., ibid. 275, 1755 (1997); D. Shalala, "Report of the Secretary to the President: Health insurance in the age of genetics" (July 1997);
5. See K. L. Hudson, K. H. Rothenberg, L. B. Andrews, M. J. Ellis Kahn, F. S. Collins, et al., Science 270, 391 (1995); K. Rothenberg et al., ibid. 275, 1755 (1997); D. Shalala, "Report of the Secretary to the President: Health insurance in the age of genetics" (July 1997);
6. See K. L. Hudson, K. H. Rothenberg, L. B. Andrews, M. J. Ellis Kahn, F. S. Collins, et al., Science 270, 391 (1995); K. Rothenberg et al., ibid. 275, 1755 (1997); D. Shalala, "Report of the Secretary to the President: Health insurance in the age of genetics" (July 1997);
7. Department of Labor et al., "Genetic Information and the Workplace" (20 January 1998).
8. For a listing of relevant state legislation, see http://www.sciencemag.org
9. Health Insurance Portability and Accountability Act, 104 Public law No. 104-191, 701, 110 Stat 1936 (1996); 42 U.S. Code Annotated (U.S.C.A.) § 12101, et seq.; Equal Employment Opportunity Commission, Compliance Manual, Section 902, 15 March 1995.
10. See H.R. 293, 106th Cong., 1st Sess. (1999); H.R. 2457, 106th Cong., 1st Sess. (1999); H.R. 2555, 106th Cong., 1st Sess. (1999); S. 543, 106th Cong., 1st Sess. (1999); S. 1322, 106th Cong., 1st Sess. (1999); S. 1344 (Title II), 106th Cong., 1st Sess. (1999).
11. 42 U.S.C.A. § 3789g(a); 42 U.S.C.A. § 299.
12. See H.R. 1057, 106th Cong., 1st Sess. (1999); H.R. 1941, 106th Cong., 1st Sess. (2999); H.R. 2404, 106th Cong. 1st Sess. (1999) H.R. 2470, 106th Cong. 1st Sess (1999); S. 573, 106th Cong, 1st Sess. (1999); S. 578, 106th Cong., 1st Sess. (1999); and S. 881, 106th Cong., 1st Sess. (1999).
13. See S. 578, 106th Cong., 1st Sess. (1999) for a formal definition of protected health information.
14. See Mayo Clinic, "Institutional Review Board policy regarding genetic research", 5 May 1998.
15. 56 Federal Register, 18 June 1999; 45 Code of Federal Regulations (CFR) 46.
16. 45 CFR 46. 116 (a)(5).
17. Office for Protection from Research Risks, Protecting Human Research Subjects: Institutional Review Board Guidebook, pp. 3-27 (1993).
18. R. O'Harrow Jr., Washington Post, 27 September 1998, p. A1. See also United States General Accounting Office, "Medical records privacy: Access needed for health research but oversight of privacy protections is limited" (February 1999).
19. R. O'Harrow Jr., Washington Post, 27 September 1998, p. A1. See also United States General Accounting Office, "Medical records privacy: Access needed for health research but oversight of privacy protections is limited" (February 1999).
20. Privacy Protection Study Commission, Personal Privacy in an Information Society, p. 579 (1977).
21. Public Health Service Act § 301(d).
22. Health and Human Services, "Interim Policy Statement: Protection of Identity - Research Subjects (5-22-89)".
23. L. O. Gostin, Cornell L. Rev. 80, 451 (1995).
24. C. L. Earley and L. C. Strong, Am. J. Hum. Genet. 57, 727 (1995).
25. The National Institutes of Health (NIH)/Department of Energy Task Force on Genetic Testing, Promoting Safe and Effective Genetic Testing in the United States (1997).
26. National Heart, Lung, and Blood Institute, Framingham home page, http://www.nhlbi.nih.gov/about/ framingham/index.html (1998).
27. The Clinical Laboratory Improvement Amendments of 1988, Public Law 100-578 (1988).
28. L. B. Andrews et al., Eds. Assessing Genetic Risks: Implications for Health and Social Policy (Institute of Medicine, National Academy Press, Washington, DC, 1994).
29. The views expressed are those of the Privacy Workshop Planning Subcommittee of the NAPBC. No official endorsement by the NIH or the Department of Health and Human Services is intended or should be inferred.