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Cancer Genetics Risk Assessment and Counseling (PDQ®): Genetics - Health Professional Information [NCI] - Ethical, Legal, and Social Implications

Table 3. Comparison of Federal Legislation Addressing Genetic Coverage, Limitations, and Protections continued...

Professional guidelines and other resources

(Refer to the Genetic Resources section of the Cancer Genetics Overview summary for more information about the ELSI of genetic testing and counseling.)

References:

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  2. Schneider K: The ethical issues. In: Schneider KA: Counseling About Cancer: Strategies for Genetic Counseling. 2nd ed. New York, NY: Wiley-Liss, 2002, pp 291-312.
  3. Offit K: Clinical Cancer Genetics: Risk Counseling and Management. New York, NY: John Wiley and Sons, 1998.
  4. Godard B, Hurlimann T, Letendre M, et al.: Guidelines for disclosing genetic information to family members: from development to use. Fam Cancer 5 (1): 103-16, 2006.
  5. Offit K: Psychological, ethical, and legal issues in cancer risk counseling. In: Offit K: Clinical Cancer Genetics: Risk Counseling and Management. New York, NY: John Wiley and Sons, 1998, pp 287-315.
  6. Beskow LM, Botkin JR, Daly M, et al.: Ethical issues in identifying and recruiting participants for familial genetic research. Am J Med Genet A 130A (4): 424-31, 2004.
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  8. Offit K, Groeger E, Turner S, et al.: The "duty to warn" a patient's family members about hereditary disease risks. JAMA 292 (12): 1469-73, 2004.
  9. Tarasoff v. the Regents of the University of California, 551 P 2d 334 (Cal 1976). 1976. Also available online. Last accessed February 04, 2013.
  10. Harris M, Winship I, Spriggs M: Controversies and ethical issues in cancer-genetics clinics. Lancet Oncol 6 (5): 301-10, 2005.
  11. Pate v. Threlkel, 661 So. 2d 278 (Florida 1995). 1995. Also available online. Last accessed February 04, 2013.
  12. Sankar P: Genetic privacy. Annu Rev Med 54: 393-407, 2003.
  13. Safer v. Estate of Pack, 677 A2d 1188 (NJ App), appeal denied, 683 A2d 1163 (NJ 1996). 1996. Also available online. Last accessed February 04, 2013.
  14. Molloy v. Meier, Nos. C9-02-1821, C2-02-1837 (Minn 2004). 2004. Also available online. Last accessed February 04, 2013.
  15. Health Insurance Portability and Accountability Act of 1996, Public Law 104-191, 104th Congress. Washington, DC: 1996. Also available online. Last accessed February 04, 2013.
  16. US Department of Health and Human Services.: OCR Privacy Brief: Summary of the HIPAA Privacy Rule. Washington, DC: US Department of Health and Human Services, 2002. Also available online. Last accessed February 04, 2013.
  17. Gordijn B: Genetic diagnosis, confidentiality and counseling: an ethics committee's potential deliberations about the do's and don'ts. HEC Forum 19 (4): 303-12, 2007.
  18. American Society of Clinical Oncology.: American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility. J Clin Oncol 21 (12): 2397-406, 2003.
  19. Robson ME, Storm CD, Weitzel J, et al.: American Society of Clinical Oncology policy statement update: genetic and genomic testing for cancer susceptibility. J Clin Oncol 28 (5): 893-901, 2010.
  20. National Society of Genetic Counselors.: National Society of Genetic Counselors Code of Ethics. Chicago, Il: National Society of Genetic Counselors, 2006. Also available online. Last accessed February 04, 2013.
  21. International Society of Nurses in Genetics.: Position Statements: Privacy and Confidentiality of Genetic Information: The Role of the Nurse. Pittsburgh, Pa: International Society of Nurses in Genetics, 2008. Also available online. Last accessed February 04, 2013.
  22. US 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, DC: Government Printing Office, 1983. Also available online. Last accessed February 04, 2013.
  23. ASHG statement. Professional disclosure of familial genetic information. The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure. Am J Hum Genet 62 (2): 474-83, 1998.
  24. Lowrey KM: Legal and ethical issues in cancer genetics nursing. Semin Oncol Nurs 20 (3): 203-8, 2004.
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  26. Hall MA, Rich SS: Laws restricting health insurers' use of genetic information: impact on genetic discrimination. Am J Hum Genet 66 (1): 293-307, 2000.
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  28. Huizenga CR, Lowstuter K, Banks KC, et al.: Evolving perspectives on genetic discrimination in health insurance among health care providers. Fam Cancer 9 (2): 253-60, 2010.
  29. National Conference of State Legislatures.: Summary: Selected Health Legislation 110th Congress. Washington, DC: National Conference of State Legislatures, 2008. Also available online. Last accessed February 04, 2013.
  30. National Human Genome Research Institute.: National Human Genome Research Institute Policy and Legislation Database. Bethesda, Md: National Human Genome Research Institute, 2008. Also available online. Last accessed February 04, 2013.
  31. Leib JR, Hoodfar E, Haidle JL, et al.: The new genetic privacy law: how GINA will affect patients seeking counseling and testing for inherited cancer risk. Community Oncology 5 (6): 351-4, 2008.
  32. American Society of Human Genetics.: Genetic Scientists Applaud U.S. Senate Passage of the Genetic Information Nondiscrimination Act: American Society of Human Genetics Supports Important New Legislation [Press Release - April 25, 2008]. Bethesda, Md: American Society of Human Genetics, 2008. Also available online. Last accessed February 04, 2013.
  33. Genetics and Public Policy Center.: Information on the Genetic Information Nondiscrimination Act (GINA). Washington, DC: Genetics and Public Policy Center, 2008. Also available online. Last accessed February 04, 2013.
  34. Asmonga D: Getting to know GINA. An overview of the Genetic Information Nondiscrimination Act. J AHIMA 79 (7): 18, 20, 22, 2008.
  35. National Conference of State Legislatures.: Genetics Laws and Legislative Activity. Washington, DC: National Conference of State Legislatures, 2008. Also available online. Last accessed February 04, 2013.
  36. Hudson KL, Holohan MK, Collins FS: Keeping pace with the times--the Genetic Information Nondiscrimination Act of 2008. N Engl J Med 358 (25): 2661-3, 2008.
  37. Genetics Perspectives on Policy Seminar - Genes in Uniform: Don't Test, Don't Tell. Washington DC, The Genetics and Public Policy Center, 2006. Also available online. Last accessed February 04, 2013.
  38. Baruch S, Hudson K: Civilian and military genetics: nondiscrimination policy in a post-GINA world. Am J Hum Genet 83 (4): 435-44, 2008.
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Last Updated: February 25, 2014
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