Congress is thinking about allowing employers to penalize employees who don't surrender their genetic information.
The Genetic Information Current law states that employers and insurance providers can't discriminate against someone because of their genetic information. House Resolution 1313 would allow employers to charge 30 percent more for an employee's health care coverage if they don't give up a genetic sample. It would also allow employers to ask employees about their and their families’ health, including genetic tests they, their spouses, and their children may have undergone.
According to the Kaiser Family Foundation, the average family pays $18,000 for employee-offered insurance. This bill would allow companies to charge an additional $5,400 annually if they don't share their genetic and health information.
The Education and the Workforce Committee's chairwoman is also the bill's sponsor, North Carolina Republican Kim Foxx. In a statement on the bill, they said it would "provide employers the legal certainty they need to offer employee wellness plans, helping to promote a healthy workforce and lower health care costs."
"It's simply unethical to penalize someone because of their genetics," said Derek Scholes, director of science policy for the American Society of Human Genetics. "Worse, there would be no restriction on them being able to share that information."
Scholes said the bill would also hurt genetic research because people wouldn't have privacy assurances when donating their information to be studied.
"We need to be reassuring them that they need not fear that any information from research studies could end up in the hands of their employer," Scholes said.
The AHSG is participating in a massive genetic study called the "All of Us" Research Program being run by the National Institute of Health. Its plan is to compile more than a million people's genetic codes in an effort to fight disease.
H.R. 1313 passed a House committee last week.
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