When the Genetic Information Nondiscrimination Act passed in 2008, supporters hailed it as the “first major civil-rights bill of the century.” GINA was unusually forward-looking; it protected against a form of discrimination that was not yet common. Under the law, employers and health insurance companies could not request genetic test results and discriminate based upon them.
Now a Republican-backed bill in the House that clarifies GINA rules as part of healthcare repeal-and-replace has kicked up a controversy. H.R. 1313 says that parts of GINA do not apply to workplace wellness programs. These programs, originally promoted in the Affordable Care Act, are meant to encourage a healthy lifestyle, and employees who participate may end up with lower premiums. If a company’s wellness program includes genetic tests to identify health risks—as some are starting to do—then employees who refuse the tests may pay hundreds or thousands more per year than their colleagues.
The uproar after STAT News reported on the bill is a reminder that fears about genetic discrimination are still very real. GINA exists for good reason.
Despite the landmark nature of GINA, the law has real limits. The statute covers employers and health insurance companies. It does not cover schools, mortgage lending, or housing. And it excludes other forms of insurance like life insurance, long-term care, and disability insurance. These issues, anticipated in the 1990s, have come up again in recent years, showing that often, genetic tests can have unanticipated consequences.