Ethical, legal, and social implications of genomic medicine

New England Journal of Medicine

Volumn 349, Issue 6, 2003, Pages 562-569

  Clayton, Ellen Wright ^a  

^a VANDERBILT UNIVERSITY   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

DOCTOR PATIENT RELATION; ETHICS; GENOMICS; HEALTH INSURANCE; LEGAL ASPECT; PRIORITY JOURNAL; PRIVACY; PUBLIC HEALTH; REVIEW; SOCIAL ASPECT; GENETIC PRIVACY; GENETICS AND REPRODUCTION; GENOME; GOVERNMENT; HUMAN; LEGAL APPROACH; NEWBORN; NEWBORN SCREENING; SOCIAL PSYCHOLOGY; UNITED STATES;

GENETICS AND REPRODUCTION; LEGAL APPROACH;

GENETIC PRIVACY; GENOME, HUMAN; GENOMICS; GOVERNMENT PROGRAMS; HUMANS; INFANT, NEWBORN; NEONATAL SCREENING; PHYSICIAN-PATIENT RELATIONS; PREJUDICE; PUBLIC HEALTH; UNITED STATES;

EID: 0042855876     PISSN: 00284793     EISSN: None     Source Type: Journal    
DOI: 10.1056/NEJMra012577     Document Type: Review

References (34)

1. Welch CA. Sacred secrets - the privacy of medical records. N Engl J Med 2001;345:371-2.
2. The Health Privacy Project. The state of health privacy: an uneven terrain (a comprehensive survey of state health privacy statutes). (Accessed July 15, 2003, at http://www.georgetown.edu/research/ihcrp/privacy/statereport.pdf.)
3. Gostin LO. National health information privacy: regulations under the Health Insurance Portability and Accountability Act. JAMA 2001;285:3015-21.
4. Lapham EV, Kozma C, Weiss JO. Genetic discrimination: perspectives of consumers. Science 1996;274:621-4.
5. Hall MA, Rich SS. Patients' fear of genetic discrimination by health insurers: the impact of legal protections. Genet Med 2000;2:214-21.
6. Pokorski RJ. Insurance underwriting in the genetic era. Am J Hum Genet 1997;60:205-16.
7. Calvo C, Johnson A, eds. Genetics policy report: insurance issues. Washington, D.C.: National Conference of State Legislatures, September 2001.
8. Genetic information and health insurance: enacted legislation as of April 29, 2002. (Accessed July 15, 2003, at http://www.nhgri.nih.gov/Policy_and_public_affairs/Legislation/insure.htm.)
9. Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191 (codified in part at 26 U.S.C. §§ 9801-9806, 29 U.S.C. §§ 1162-1167, 1181-1191c, and 42 U.S.C. § 300gg).
10. Health insurance law for workers changing jobs misses its goal. Wall Street Journal. March 12,1998:B8.
11. Hudson KL, Rothenberg KH, Andrews LB, Kahn MJ, Collins FS. Genetic discrimination and health insurance: an urgent need for reform. Science 1995;270:391-3.
12. Genetic Information Nondiscrimination in Health Act of 2003, S. 1053, 108th Cong., 1st Sess.
13. Chance PF. Overview of hereditary neuropathy with liability to pressure palsies. Ann N Y Acad Sci 1999;883:14-21.
14. Lewin T. Commission sues railroad to end genetic testing in work injury cases. New York Times. February 10, 2001:A7.
15. Burlington Northern settles suit over genetic testing. New York Times. April 19, 2001:C4.
16. 42 U.S.C. §§ 12111-12117 (2001).
17. Calvo C, Johnson A, eds. Genetics policy report: employment issues. Washington, D.C.: National Conference of State Legislatures, September 2001.
18. Chevron, U.S.A., Inc. v. Echazabal, 122 S. Ct. 2045 (2002).
19. Toyota Motor Mfg., Inc. v. Williams, 122 S. Ct. 681 (2002).
20. Silvers A, Stein MA. An equality paradigm for preventing genetic discrimination. Vanderbilt Law Rev 2002;55:1341-95.
21. Rothstein MA, Anderlik MR. What is genetic discrimination, and when and how can it be prevented? Genet Med 2001;3:354-8.
22. Safer v. Pack, 677 A.2d 1188 (N.J. App.), appeal denied, 683 A.2d 1163 (N.J. 1996).
23. Clayton EW. What should the law say about disclosure of genetic information to relatives? J Health Care Law Policy 1998;1:373-90.
24. Tarasoff v. Regents of University of California, 551 P.2d 334 (Cal. 1976).
25. Andrews LB, Fullarton JE, Holtzman NA, Motulsky AG, eds. Assessing genetic risks: implications for health and social policy. Washington, D.C.: National Academy Press, 1994.
26. Professional disclosure of familial genetic information. Am J Hum Genet 1998;62:474-83.
27. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Screening and counseling for genetic conditions: a report on the ethical, social, and legal implications of genetic screening, counseling, and education programs. Washington, D.C.: Government Printing Office, 1983.
28. Pate v. Threlkel, 661 So. 2d 278 (Fla. 1995).
29. Fleisher LD, Cole LJ. Health Insurance Portability and Accountability is here: what price privacy? Genet Med 2001;3:286-9.
30. Creason v. State Dept. Health Services, 957 P.2d 1323 (Cal. 1998).
31. Khoury MJ, McCabe LL, McCabe ERB. Population screening in the age of genomic medicine. N Engl J Med 2003;348:50-8.
32. Holtzman NA, Watson MS, eds. Promoting safe and effective genetic testing in the United States: final report of the Task Force on Genetic Testing. Baltimore: Johns Hopkins University Press, 1998.
33. Centers for Disease Control and Prevention. Translating advances in human genetics into public health action: a strategic plan. (Accessed July 15, 2003, at http://www.cdc.gov/genomics/about/strategic.htm.)
34. Secretary's Advisory Committee on Genetic Testing. Enhancing the oversight of genetic tests: recommendations of the Secretary's Advisory Committee on Genetic Testing. (Accessed July 15, 2003, at http://www4.od.nih.gov/oba/sacgt.htm.)