In 2007, two senators—one Democrat and one Republican—proposed a bill to accelerate research in human genetics. The young Democrat, a relative unknown named Barack Obama, saw a future in which regular genetic testing allowed for “personalized medicine for all Americans,” including better medical treatments, more accurate diagnoses, and safer drug prescriptions. But first, he had one condition. “I don’t want [the bill] to go anywhere until GINA passes,” he told an aide .
GINA—the Genetic Information Non-Discrimination Act—was written to stop DNA from becoming a tool of discrimination. It prevented employers from basing employment decisions on someone’s genes, and it stopped health insurers from denying coverage or charging higher premiums if someone had, say, a gene that upped their cancer risk. First proposed in 2003 [+] , it went through several incarnations before finally being passed in 2008 , with nigh-unanimous bipartisan support. It was a symbolic deterrent, designed to protect against a form of discrimination that didn’t really exist yet, but was deeply feared.
“It means that an employee has virtually no control over their own genetic information.”
With protections in place, then-President Obama finally got his wish in 2015, and launched the Precision Medicine Initiative—an ambitious plan to collect genetic and health information from one million Americans by the end of 2019 . This hoard of data would give scientists an unprecedented look at the links between genetics, lifestyle, environment, and health, and allow them to start truly tailoring medical treatments at a personal level. This year , the initiative, now rebranded as the All of Us cohort, will start recruiting its first volunteers.
Which is ironic, because the GOP has just put their genetic privacy at risk by launching a devastating attack against GINA.
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