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The threat of H.R. 1313

The genetic genealogy community has called it our best friend.

It’s given us comfort when we’ve been challenged or attacked.

It’s given us cover when we’ve been concerned — when our cousins have wondered if their test results would put them in danger.

And now it’s at risk, through a back door most of us didn’t see coming.

That best friend is a federal statute known as GINA. In full, the Genetic Information Non-Discrimination Act of 2008. As described in Wikipedia:

The Genetic Information Nondiscrimination Act of 2008 (Pub.L. 110–233, 122 Stat. 881, enacted May 21, 2008, GINA, pronounced Gee-na), is an Act of Congress in the United States designed to prohibit the use of genetic information in health insurance and employment. The Act prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also bars employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions. …

In 2008, on April 24 H.R. 493 passed the Senate 95-0. The bill was then sent back to the House of Representatives and passed 414-1 on May 1; the lone dissenter was Congressman Ron Paul. President George W. Bush signed the bill into law on May 21, 2008.1

And the risk is coming from a bill now moving swiftly through Congress to allow employers to get access to that genetic information … and stripping away some of the protections we now enjoy … under the guise of what are called employee wellness programs.

The wellness plans are popular with employers despite the almost total absence of evidence that they actually contribute to any improvements in employee health. They are usually managed by outside firms that are largely unregulated: they are not insurers, regulated by state insurance commissions; they are not medical providers, regulated by state or federal law. That puts them largely outside of the mandates that keep data protected from being shared or sold for commercial purposes.

The proposed bill, H.R. 1313, allows employers to penalize employees who don’t fully participate in the wellness plans up to 50% of the costs of employer-provided insurance. And to fully participate an employee has to hand over the kind of information that GINA has said can’t be required, can’t be used, can’t be considered by an employer.

That includes results of DNA tests by the employee… and information and results of tests by family members. None of which can be required or even requested now.

Now, in theory, wellness plans are voluntary. No employee has to participate. But when an employer can charge an employee up to half of the cost of insurance if the employee doesn’t go along, the notion of voluntariness pretty much goes out the window.

Here’s the concern as expressed by the American Society for Human Genetics:

A key component of ADA (the Americans with Disabilities Act) and GINA is that they prevent workers and their families from being coerced into sharing sensitive medical or genetic information with their employer. For GINA, genetic information encompasses not only employees’ genetic test results but also their family medical histories. H.R.1313 would effectively repeal these protections by allowing employers to ask employees invasive questions about their and their families’ health, including genetic tests they, their spouses, and their children may have undergone. GINA’s requirement that employees’ genetic information collected through a workplace wellness program only be shared with health care professionals would no longer apply.

 

The bill would also allow employers to impose financial penalties of up to 30 percent of the total cost the employee’s health insurance on employees who choose to keep such information private. According to the Kaiser Family Foundation, the average annual premium for employer-sponsored family health coverage in 2016 was $18,142. Thus, for such a plan, a wellness program could charge employees an extra $5,443 in annual premiums if they choose not to share their genetic and health information.

 

“If enacted, this bill would force Americans to choose between access to affordable healthcare and keeping their personal genetic and health information private,” said Derek Scholes, PhD, director of science policy at ASHG. “Employers would be able to coerce employees into providing their genetic and health information and that of their families, even their children.”2

As genetic genealogists we often comfort our worried cousins with the GINA protections, reminding them that genetic test results can’t be used against them for insurance or employment purposes.

But when not disclosing such information can cost them up to half of the cost of an insurance plan — with such plan costs estimated to be as much as $18,000 for a family — that assurance doesn’t mean nearly as much.

In the absence of evidence that access to this sort of genetic information is really essential to keep people healthy on the job, it’s hard to see what the legitimate basis is for this bill, which seems to be kmoving forward at a fast clip.

From a genetic privacy standpoint, this may very well be a game-changer for us all as we go forward.


SOURCES

  1. Wikipedia (http://www.wikipedia.com), “Genetic Information Nondiscrimination Act,” rev. 7 Mar 2017.
  2. ASHG Opposes H.R.1313, the Preserving Employee Wellness Programs Act: Bill Would Undermine Genetic Privacy Protections,” American Society of Human Genetics, Press Release, 8 March 2017 (http://www.ashg.org/press/ : accessed 11 Mar 2017).
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