The Obamacare repeal blueprint that President Donald Trump and House Republican leaders are trying to slam through the House this week is horrible enough, ripping away insurance from millions and giving a huge tax break to the wealthy.
But if some Republicans get their way, a bill that would threaten our DNA privacy could be part of the follow-up legislation to replace the Affordable Care Act. The bill, which quietly passed a House committee this month, should be taken off the table now before it gets too far.
A broad range of health, privacy and consumer advocacy groups already have come out against the proposal, which would let employers impose financial penalties on workers who refuse genetic testing as part of workplace wellness programs. The American Academy of Pediatrics, AARP, March of Dimes and others have very good reasons for raising the alarm.
The Genetic Information Nondiscrimination Act of 2008 bans discrimination by health insurers and employers based on genetic information. There is an exception for workers to divulge DNA test results as part of voluntary wellness programs, as long as there are no incentives for providing the information, or penalties for not doing so.
This bill, H.R. 1313, introduced by Rep. Virginia Foxx, a North Carolina Republican, would widen that loophole by allowing companies to charge as much as 30 percent more in health insurance costs for employees who choose to keep genetic information to themselves. For a worker with an average premium for employer-sponsored family health coverage of $18,142 a year, that would mean about $5,400 in additional cost.
That’s hardly voluntary.
One of the key advances of Obamacare was to stop insurers from charging more, or refusing coverage altogether, based on a pre-existing medical condition. This bill could chip away at that.
With advances in technology, mere consumer genetic tests can reveal predispositions for diseases and disorders including Alzheimer’s, aneurysms, diabetes, various cancers, heart disease and multiple sclerosis. Some privacy advocates warn that employee DNA information could be unfairly used against family members.
The American Benefits Council, which represents employer-sponsored health plans, supports the bill, saying it would clear up competing regulations that make it difficult to offer wellness programs that promote a healthy workforce and lower health care costs. (The California Chamber of Commerce has not taken a position on the bill.)
If that’s all it really did, it would be just fine. But the bill is far too coercive and too much of a danger to privacy of our most personal information.