All Your Genetic Testing Results Are Belong To Us!

And by us, I mean your employer. Because freedom (boldface mine):

A little-noticed bill moving through Congress would allow companies to require employees to undergo genetic testing or risk paying a penalty of thousands of dollars, and would let employers see that genetic and other health information.

Giving employers such power is now prohibited by legislation including the 2008 genetic privacy and nondiscrimination law known as GINA. The new bill gets around that landmark law by stating explicitly that GINA and other protections do not apply when genetic tests are part of a “workplace wellness” program.

The bill, HR 1313, was approved by a House committee on Wednesday, with all 22 Republicans supporting it and all 17 Democrats opposed. It has been overshadowed by the debate over the House GOP proposal to repeal and replace the Affordable Care Act, but the genetic testing bill is expected to be folded into a second ACA-related measure containing a grab-bag of provisions that do not affect federal spending, as the main bill does.

“What this bill would do is completely take away the protections of existing laws,” said Jennifer Mathis, director of policy and legal advocacy at the Bazelon Center for Mental Health Law, a civil rights group. In particular, privacy and other protections for genetic and health information in GINA and the 1990 Americans with Disabilities Act “would be pretty much eviscerated,” she said.

It gets worse:

The bill is built around an exception in GINA concerning genetic testing that is part of health or genetic services the employer offers, such as part of a wellness program. However, GINA stipulates that only the person and the health care provider or board certified genetic counselor can view the results. GINA also spells out that genetic testing as part of a wellness program must be entirely voluntary.

A May 16, 2016, ruling from the Equal Employment Opportunity Commission laid the groundwork for penalizing employees who refuse to answer questions about their or their spouses’ health. This could amount to thousands of dollars a year, according to a report from the Kaiser Family Foundation. H.R.1313 would make that even worse.

It would further permit workplace wellness programs to penalize much more severely employees who wish to keep their genetic and health information private, allowing penalties of up to 30 percent of the total cost of an employee’s health insurance,” Dr. Cox writes. And the Public Health Service Act permits an increase to 50%. “Penalties of this magnitude would compel Americans to choose between retaining the privacy of their health and genetic information and accessing affordable health insurance.”

…H.R.1313 would “effectively repeal the fundamental genetic and health privacy protections in GINA and the ADA. It would allow workplace wellness programs to ask employees questions about genetic tests taken by themselves or their families, and to make inquiries about the medical history of employees, their spouses, their children, and other family members,” Dr. Cox writes.

But I’m sure this won’t be misused, such as to fire employees with a genetic predisposition to certain disease. Because your employer is your friend, right?

Of course, this could be a boom for the genetic testing and consulting industry, as workers (those who can afford it), get their own tests to shoot down their employer’s claims.

On the other hand, the potential backlash against scientists, and biologists in particular, could be awful.

Aside: All Republicans voted for H.R. 1313, while all Democrats voted against. While Democrats are routinely disappointing, they are better than Republicans.

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