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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]

Exception to protections against employment and insurance discrimination: Active duty military personnel

GINA and other state and federal protections do not extend to genetic testing of active duty military personnel or genetic information obtained from active duty military personnel.[36,37] In the military, genetic testing provides medical information that is to be used to protect military personnel from harmful duty or other exposures that could stimulate or aggravate a health problem. For example, use of certain antimalaria medication in individuals with glucose 6-phosphate dehydrogenase deficiency can result in red blood cell rupture. Therefore, some genetic information is critical for maintaining the health and safety of military personnel, given the possible stressful occupational environments they face. In addition, all military personnel provide a DNA sample to be maintained in a repository that can be used for identification purposes.[38]

Results of genetic tests for disease predisposition could influence military eligibility for new enlistments, and for current military personnel, genetic test results could influence worldwide eligibility, assignments, and promotions. For example, a young woman found to carry a BRCA mutation may not be considered eligible for deployment for 12-15 months because access to recommended health care may not be easily accessible, such as breast MRI, a recommended screening modality for BRCA mutation carriers. Active duty military personnel with less than eight years of active duty service are especially vulnerable in the event they become disabled and must go before the medical board to establish benefit eligibility.

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