GINA (Genetic Information Nondiscrimination Act 2008)

United States, federal statute. The Genetic Information Nondiscrimination Act was signed on 21 May 2008 (Public Law 110-233) after thirteen years of attempts. Title I bars health insurers from using genetic information to set eligibility or premiums or from requiring tests; Title II bars employers with fifteen or more staff from using it in hiring, firing or promotion, enforced by the Equal Employment Opportunity Commission. Primary text: the EEOC statute page and the Congress.gov record of H.R.493.

What it changed for cancer: fear of discrimination was the main reason people declined BRCA testing in the 1990s and 2000s. GINA, together with the Affordable Care Act's ban on pre-existing condition exclusions from 2014, removed the health insurance and employment risk, and uptake of hereditary cancer testing rose. Genetic counsellors still explain the gaps: the Act does not cover life insurance, disability insurance or long-term care insurance, does not apply to the military or to employers with fewer than fifteen employees, and protects information about risk rather than a diagnosis already made.

The arguments: several states (California, Florida, Illinois among others) have legislated to fill the life and disability insurance gap; insurers argue that hidden genetic knowledge creates adverse selection. Elsewhere, the United Kingdom relies on a voluntary code between the government and the insurance industry, and the European Union's GDPR treats genetic data as a special category.