What the House’s Genetic Privacy Bill (H.R. 1313) Actually Says – And No There Aren’t “Penalties”

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I get it. Healthcare is expensive. And it’s likely to start getting way more expensive. The House’s bill allowing for rewards for employees willing to undergo genetic testing sounds like a great idea. Except that such a system would simply result in rewarding benefits to those who already live privileged lives.

So, this post came out longer than I expected, so here’s the jist:

Imagine an employee, we’ll call her “Emily” decides she’s willing to undergo genetic testing as part of her employer’s wellness program.  If the house’s new bill, H.R. 1313 passes, then Emily could receive up to 30% off of her health insurance premiums for doing so, if her genetic testing come back indicating that she’s super healthy and not likely to ever suffer from certain diseases.

But if Emily is super healthy and not likely to ever suffer from those diseases, Emily likely enjoys many benefits already in life. Emily likely never has to take a sick day from work. Her extended family is likely to be very healthy as well, so Emily likely has never had to take time off work to care for a relative. Emily will likely also be able to work later into her life, allowing her to save more and generally avoid the financial pitfalls that bad health can cause. Emily likely already enjoys many benefits due to being super healthy. As a society, do we really want to give her yet another benefit?

Now that you’ve read where I’m going, here’s an in-depth look at the current status of genetic privacy law in the U.S., where it’s headed, and what that will mean for you and the people in your life.

First, let’s start by taking a look at the Genetic Information Non-Discrimination Act, also known as “GINA”:

“The 2008 law, which was more than a decade in the making, bars employers from using people’s genetic data to make hiring, promotion, or other employment decisions. To ensure against these types of discrimination, GINA prohibits employers from requesting, requiring, or purchasing their employees’ genetic information, except under limited circumstances. For example, employers can request genetic information when they offer health or genetic testing services, for example, as part of a wellness program. However, the law forbids employers from providing inducements on the condition that an employee provides genetic information.,” GINA Supporters Concerned House Bill Undermines Genetic Non-Discrimination Law

TL;DR? Under GINA, your employer can request that you give up your genetic privacy by disclosing your genetic data as part of a wellness program. Wellness programs include programs that encourage employees to take walks, wear a Fitbit, eat healthy, etc. The kicker though is that under GINA, your employer can’t say “hey, so, if you can prove to us that your DNA shows that you are not likely to get <insert disease of choice>, we’ll make your insurance premiums lower”.

Unfortunately, the new bill before the House would allow such inducements:

“Any reward provided or offered by a program described in such subparagraph shall be less than or equal to the maximum reward amounts provided for by section 2705(j)(3)(A) of the Public Health Service Act (42 U.S.C. 300gg–4(j)(3)(A)), regard-less of whether such programs are otherwise subject to such limitations;” H.R. 1313(a)(1)(B)(2).

Translation: If you submit to genetic testing, your employer can reward you for doing so, even though your employer couldn’t reward you before under GINA.

And Those Inducements are Significant:

“(A) The reward for the wellness program, together with the reward for other wellness programs with respect to the plan that requires satisfaction of a standard related to a health status factor, shall not exceed 30 percent of the cost of employee-only coverage under the plan. If, in addition to employees or individuals, any class of dependents (such as spouses or spouses and dependent children) may participate fully in the wellness program, such reward shall not exceed 30 percent of the cost of the coverage in which an employee or individual and any dependents are enrolled. ,” 42 U.S.C. 300gg–4(j)(3)(A)

Translation: Giving up your genetic privacy could mean discounts up to 30% off of your premium payments.

The Washington Post explored this in detail:

“The average annual premium for employer-sponsored family health coverage in 2016 was $18,142, according to the Kaiser Family Foundation. Under the plan proposed in the bill, a wellness program could charge employees an extra $5,443 in annual premiums if they choose not to share their genetic and health information.,” Employees who decline genetic testing could face penalties under proposed bill

Important Clarification

Read the excerpt above from The Washington Post carefully: their reporter, , phrased the situation incorrectly. It’s not that employers could charge more. It’s that they could charge employees who submit to genetic testing less. That matters. Technically nothing changes if you are an employee who refuses to disclose your genetic data. However, with the changes coming to the healthcare system, it’s entirely possible that your rates are going to go up significantly, and that these financial rewards would be your only way to keep things the same. But for now? For now the law doesn’t mean you pay more. It just means you wouldn’t get to pay less.

Why You Should Still Oppose the Bill

Ok, so it took me awhile to get here. But I wanted to make sure that you, the reader, fully understood how things stand re genetic privacy as of right now. Let’s say, for instance, that your employer offered a discount for you to submit to genetic testing that disclosed whether you have the BRCA gene (commonly known as the “Breast Cancer gene”).

MIT Technology Review reported this study from Iceland a couple years ago:

“Kári Stefánsson, the doctor who is founder and CEO of DeCode, says he is worried about mutations in a gene called BRCA2 that convey a sharply increased risk of breast and ovarian cancers. DeCode’s data can now identify about 2,000 people with the gene mutation across Iceland’s population, and Stefánsson said that the company has been in negotiations with health authorities about whether to alert them.” Genome Study Predicts DNA of the Whole of Iceland

What this study showed was that if you get a large enough sample and your population is sufficiently homogeneous, you can make predictions about the DNA makeup of people you don’t have samples for. Fortunately, the U.S. is pretty heterogeneous (we’re pretty racially mixed), so that would be harder to do here. But it’s still possible on a familial level.

Back in 2010, L.A. police used familial DNA to identify a serial killer:

“Police say they found the man accused of killing 11 people — in murders dating back to 1985 — by comparing DNA found at some of the crime scenes with the DNA of the suspect’s son, who was in a California lock-up. The son’s DNA led them to the father, and police are sure they’ve solved the case. ,” Accused serial killer snared using controversial technique

So while you may not be all for protecting the privacy rights of serial killers, those are just the kinds of stories that make the news. Familial DNA could also be used to track down domestic violence survivors and other people that society has generally decided are worth protecting.

Mostly Importantly, We Could Put $5,443 to Better Use

Recall what I mentioned above about the recipients of these “rewards” – the recipients are going to be super healthy people who likely already lead pretty privileged lives. If you’re all about trickle-down economics, then maybe you figure giving Emily $5,443 to use as she likes in the economy is a perfectly fine answer. I’d rather the $5,443 was applied towards supporting free/low-cost clinics. But I’ll just leave you with this thought: imagine what would happen if companies throughout the U.S. used that money that would otherwise go to rewards for corporate social responsibility projects. What sorts of incredible things could result?

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