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Current federal legislation
provides inadequate protection for people whose genes may predispose
them to expensive diseases. The Americans with Disabilities Act
(ADA) protects rights to employment, both for people with existing
genetic conditions and people whose genes will cause significant
disability later in life.2 ADA does not apply to health insurance.
Of course, employment and health insurance are closely linked.
The federal Health Insurance Portability and Accountability Act
(HIPAA) allows people with genetic conditions who are already
insured to transfer insurance from one employer to another, but
does not prevent steep increases in premiums.
More protection is needed either through mandated extended
insurance coverage or by protecting privacy of information. Federal
legislators have chosen the privacy route. In the last Congress,
110 bills on genetic privacy were introduced. None reached a full
committee, partly because of the difficulty of setting "genetic"
information apart from other medical information. Broader bills
on medical privacy may fare better. Meanwhile, keeping "shadow
charts" for genetic information is legally dubious and may
be harmful if such information is not conveyed to referrals.
Catherine
Baker
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