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. Read more »