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Cancer Health Center

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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...

GINA amends and/or extends coverage of HIPAA, ADA, and ERISA by including genetic information under medical privacy and confidentiality legislation and employment and insurance determinations.[29] Additionally, with the passage of GINA, researchers and clinicians can encourage participation in clinical trials and appropriate genetic testing knowing that there are federal protections against discrimination based on the results of genetic testing. GINA established the minimum protection level that must be met in all states. However, for states with more robust legislation in place, GINA does not weaken existing protections provided by state law.

However, GINA has several limitations.

  1. GINA does not apply to members of the United States military, to veterans obtaining health care through the Veteran's Administration, or to the Indian Health Service because the laws amended by GINA do not apply to these groups and programs.
  2. The legislation does not apply to life insurance, long-term care insurance, or disability insurance. Even though GINA does not provide protection for employer-provided disability and life insurance, some states do encompass these arenas in addition to employment, genetic privacy, health insurance, health insurance enforcement, life, disability, and long term care.[24,35] NCSL has links to tables summarizing what each state determines genetic information to encompass and the relevant state regulations. Thirty-five states have legislation covering genetic discrimination in hiring, firing, and/or terms, conditions or privileges of employment. Seven states have varying legislation covering genetic discrimination in life, disability and/or long-term care insurance. Some states mention life, disability or long-term care as exclusions to their genetic nondiscrimination legislation.[35]

A study conducted between 2009 and 2010 via a survey posted on the Facing Our Risk of Cancer Empowered (FORCE) Web site provides insight into consumers' perspectives regarding insurance discrimination based on genetic test results after the passage of GINA. Of the 1,669 participants (69% of whom previously received genetic testing), 53% indicated that they had heard about insurance discrimination based on genetic test results. More than half the sample (54%) reported that they had not heard about GINA before the survey. After being provided with a brief description of GINA as part of the survey process, 60% (n = 886) reported a change in their feelings about genetic testing, with the majority (573 of 886 participants) indicating less concern about health insurance discrimination. Finally, when asked whom they would contact regarding questions about GINA, 38% indicated their health care provider.[36]

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