The Genetic Information Nondiscrimination Act (GINA) has made it through Congress, more than a decade after first being introduced as a means of protecting individuals from discrimination based on their genetic risk for disease.
Though we don’t believe the law is a panacea, it does lay the groundwork for a sensible approach to protecting people from having their genetic information used against them.
GINA makes it illegal for employers or health insurers to use genetic information as a basis for hiring decisions, offering coverage or setting premiums. Such practices are already against the law in most states, but many people worry that what they learn through genetic testing could still end up hurting them.
GINA does not extend to life insurance or long-term care coverage, two areas where the role of genetic information is also a difficult issue.
Some industry groups opposed the measure, claiming that it was unnecessary because it duplicated existing state laws – 47 states already have statutes prohibiting genetic discrimination in some form – and that no suits had ever been filed under any of those laws.
The House of Representatives passed the bill last year by a vote of 420 to three. But the efforts of a single Senator, Tom Coburn of Oklahoma, had prevented it from coming before the Senate until today. A few minor changes, including wording that would protect self-insured companies from being sued twice (once as employers and once as insurers) satisfied Coburn’s objections. GINA passed the Senate today by a vote of 95 – 0.
President Bush has indicated he plans to sign the bill into law.