The Genetic Information Nondiscrimination Act (GINA) was enacted in 2008 to protect Americans from being widely discriminated against by a then new technology: genetic testing. The law was written after genetic discrimination emerged in the 1970s. At the time, programs to screen and identify genetic carriers of sickle cell anemia, a disease which afflicts many Black Americans, were being mandated by states. These mandated screening programs targeted Black people, perpetuating racial bias and stigmatization. Congress acted to make this genetic discrimination illegal. But now, GINA is 15 years old and needs to be updated to reflect a new threat of abuse of biological information — epigenetic discrimination. Because the law was written before many modern advances in the field of genetics, it is unclear whether its protections will extend to the novel types of information that will soon be generated from millions of Americans.
GINA was a culmination of more than a decade of work that began long before the entire sequence of the human genome was even known. GINA has enabled people to access their genetic information and undergo a genetic test without fear that the results would lead to higher health insurance premiums or lost work opportunities if that data showed them at risk of developing a disorder. It banned genetic discrimination, but only in the limited contexts of health insurance and employment.
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