President Bush Signs GINA!

With President Bush's signature yesterday, the Genetic Nondiscrimination Act (GINA) has become law. This is excellent news for anyone considering genetic testing who might justifiably be worried about their future eligibility for health insurance being effected by the results of their testing.

Let me illustrate by personal example. My family has a history of Hypertrophic Cardiomyopathy (HCM) which causes thickening in the central wall of the heart and which can lead to complications, including sudden death. HCM has been linked to mutations in genes related to the formation of heart muscle. There are now genetic tests available that have a reasonably good chance of finding whether a person carries known mutations related to HCM. To use the test, one family member with known HCM is tested to see if any of the known HCM markers are present. If markers are found, it is easy and inexpensive to test additional family members for HCM. This is where GINA becomes important.

Because of the risk of sudden death with HCM and because HCM may not be initially detectable in children, using such a genetic test on my nieces and nephews would allow their parents to know for sure whether any of the kids have HCM or not and to take appropriate precautions. The problem has been, however, that if a child is found to have the mutations related to HCM, this may be considered a pre-existing condition by insurance companies later in the child's life which may affect their ability to obtain insurance. GINA improves the situation by making it unlawful for insurance companies to discriminate against people based on the results of genetic testing.

Full details on GINA are here.

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Josh Simons

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