Talkin’ About a Revolution: The New Invasion of Privacy: Employer Access to Genetic Testing

According to Title II of the Genetic Information Nondiscrimination Act of 2008 or GINA it is illegal for employers to “discriminate against employees or applicants because of genetic information… GINA prohibits the use of genetic information in making employment decisions, restricts employers and other entities covered by Title II… from requesting, requiring or purchasing genetic information, and strictly limits the disclosure of genetic information.”

But this has not stopped the proposal of legislation (some of these provisions already exist in the ACA), which would, in effect, overturn GINA. Very quietly slipped into the various bills that will make up the jigsaw for Trump’s Repeal and Replace is a very disturbing bill entitled H.R. 1313 or, The Preserving Employee Wellness Programs Act. This little piece, under the guise of a voluntary workplace wellness program, would allow employers access to any genetic testing of employees. has reported: “Company wellness programs, which often involve filling out health surveys and undergoing screenings, are pitched as a way to improve employee health and reduce overall health costs. But, research has shown that they have little effect on employee health and may actually end up costing companies. Still, they may survive as a way to push healthcare costs onto employees.”

These programs, while considered voluntary, may cost employees more for their healthcare if they do not comply.

According to Vox.Com H.R. 1313 would expand the ACA in the following ways:

  • First, the bill would kill legal challenges over whether workplace wellness programs are actually voluntary. Under Obamacare, people who joined employee wellness programs at work were sometimes asked to submit health assessments or questionnaires. Workers who participated were eligible for a 30 percent (or higher) discount on their health insurance premiums. Employees who didn’t participate couldn’t get that discount, and therefore paid more for their health insurance.
  • Second, the bill would allow employers to ask about an employee’s family medical history — or risk paying a surcharge. Right now, under the Genetic Information Nondiscrimination Act (GINA), wellness programs cannot inquire about an employee’s family medical history. The reason for the prohibition is simple: If you’re on a family plan, employers are helping subsidize all that costly medical care for your sick family members. “If you might have a sicker-than-average family, your employer is not going to be too happy to keep you on,” said Bagley.
  • Third, employers would be able to demand your personal genetic information — unless you pay a surcharge. The new bill, once again, goes further: It says that if an employer runs a wellness program that complies with the ACA, then it’s okay to ask workers for their personal information. So this would mean employers could demand access to the results of genetic tests an employee might have undergone during pregnancy or to determine if she’s susceptible to breast cancer, for example.
  • Fourth, the bill transfers more regulatory power from an independent committee to federal agencies. The EEOC is an independent agency involved with overseeing compliance of the ADA, and it also currently has regulatory authority over employee wellness programs. The new bill would transfer regulatory power from the EEOC to agencies (HHS, Labor, and Treasury) headed by President Trump’s Cabinet members.” is reporting that “H. R. 1313 was approved by a House committee…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.”

You must call your representatives and tell them to vote NO on H.R. 1313.

This legislation not only invades the medical privacy of everyone, but it could potentially open us all up to discrimination on a molecular level. Armed with this very personal genetic information, employers can charge employees more money for employer based healthcare, refuse to hire, fire or not promote within based on anything they might learn about your genetics. This begins to feel like some strange dystopian novel that we all thought was fiction but now seems more real than ever. We must continue to fight this legislation. We must continue to safeguard the integrity of our medical privacy and not have it invaded to improve the profit and loss sheet on some employers healthcare tax credit line.

We need to use our voice to be heard.

We need to be heard to effect change.

Joan Hanna has published poetry, creative nonfiction, fiction, book reviews and essays in various online and print journals. Hanna’s first poetry chapbook, Threads, was named a finalist in the 2014 Next Generation Indie Book Awards. Both Threads and her second chapbook, The Miracle of Mercury, are available through Finishing Line Press. Hanna has previously served as Assistant Managing Editor for River Teeth, Assistant Editor for rkvry Quarterly Literary Journal, Managing Editor for Poets’ Quarterly and Senior Editor at Glassworks. Hanna holds a Master of Fine Arts in Creative Writing and teaches creative writing at Rowan University. You can follow her personal blog at Writing Through Quicksand.


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