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Sunday, November 1, 2009
Learning Objective 1: The learner will be able to identify provisions of GINA that impact genetic testing.
Learning Objective 2: The learner will be able to relate elements of GINA relevant to familial cutaneous malignant melanoma versus sporadic cutaneous malignant melanoma.
The Genetic Information Nondiscrimination Act (GINA) of 2008, the first federal genetic nondiscrimination law, will be fully enacted in the United States by November, 2009. GINA prevents genetic discrimination in regards to health insurance coverage and employment decisions. Individuals with family history of cancer cannot freely undergo clinical genetic testing to guide their health decisions and also undergo investigational research genetic testing without fear of retribution by insurers and employers. GINA helps guard against discrimination regarding genetic testing, but does not protect individuals undergoing genetic testing from discrimination when applying for life, long-term care and disability insurance coverage. GINA provisions also do not extend to members of the United States military. Individuals with a deadly autosomal dominant inherited skin cancer, familial cutaneous malignant melanoma, face complex decisions regarding genetic testing. Currently there are two main genes involved with familial melanoma susceptibility. Incidence of these gene mutations increases with a positive family history. Host and environmental factors are also related to melanoma susceptibility. Thus, genetic testing is not recommended for such high-risk families except for research purposes. However, genetic testing for hereditary cutaneous melanoma may be desired for affected family members in order to make informed decisions regarding melanoma screening, surveillance and prevention of this cancer. GINA provisions need to be considered on a case by case basis when families at high risk for developing malignant melanoma are identified. Decisions to undergo genetic testing could have long-term consequences for these families at present and in future generations. Family members identified as high-risk with a possible genetic mutation for familial cutaneous malignant melanoma need to be educated about GINA’s provisions in order to make informed decisions regarding clinical genetic testing.