In 2008, President George W. Bush signed the Genetic Information Nondiscrimination Act (Pub. L. 110-233). GINA restricts the collection and use of genetic information in a number of ways. GINA prohibits health insurance providers and employers from requiring genetic testing. Under the federal law, genetic data cannot be used to determine insurance premiums, eligibility for insurance, or employment.
States have also passed laws to protect individuals’ genetic privacy. Shortly after the passage of GINA, Illinois passed what would become Public Act 095-0927 (pdf), “An Act concerning health,” which strengthened privacy protections already in place under the Illinois Genetic Information Privacy Act of 1998. And in 2011, California Gov. Jerry Brown (D) signed SB 559, the California Genetic Information Nondiscrimination Act (CalGINA) (pdf). Going beyond the federal GINA, CalGINA also prohibits genetic discrimination in housing, mortgage lending, employment, health insurance coverage, life insurance coverage, education, public accommodations, and elections.
These laws are meant to protect employees’ privacy from employer access and to shield them from discrimination based on their genetic data, but the federal GINA could be undermined if a bill being considered in Congress becomes law.
GINA has an exception that allows employees to voluntarily provide genetic data as part of workplace wellness programs. But Rep. Virginia Foxx (R-N.C.) has introduced H.R. 1313, the Preserving Employee Wellness Programs Act, which would allow employers to penalize workers who do not provide their private genetic information (as well as the personal genetic data of their families) as part of the wellness programs. The Washington Post reports the bill, “would allow employers to impose penalties of up to 30 percent of the total cost of the employee’s health insurance on those who choose to keep such information private.”
The New York Times notes that the federal Equal Employment Opportunity Commission has pursued cases against employers that it says used wellness programs to discriminate against workers. The new bill, the Times reports, would “weaken the role of the E.E.O.C. in overseeing wellness programs and its ability to prevent violations of antidiscrimination laws established under the Genetic Information Nondiscrimination Act and the Americans With Disabilities Act.”
Nearly 70 organizations sent a letter (pdf) to Congress criticizing the legislation. The organizations — including the AARP, Families USA, and the National Women’s Law Center — state that GINA and the Americans With Disabilities Act have substantial privacy provisions that would be undermined by this legislation.
The new bill, which has passed the House Committee on Education and the Workforce, is being considered by other House committees and would need to be voted on by the entire House before heading to the Senate for consideration.