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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.

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“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.

Employers say they need the changes because those two landmark laws are “not aligned in a consistent manner” with laws about workplace wellness programs, as an employer group said in congressional testimony last week.

Employers got virtually everything they wanted for their workplace wellness programs during the Obama administration. The ACA allowed them to charge employees 30 percent, and possibly 50 percent, more for health insurance if they declined to participate in the “voluntary” programs, which typically include cholesterol and other screenings; health questionnaires that ask about personal habits, including plans to get pregnant; and sometimes weight loss and smoking cessation classes. And in rules that Obama’s Equal Employment Opportunity Commission issued last year, a workplace wellness program counts as “voluntary” even if workers have to pay thousands of dollars more in premiums and deductibles if they don’t participate.

Despite those wins, the business community chafed at what it saw as the last obstacles to unfettered implementation of wellness programs: the genetic information and the disabilities laws. Both measures, according to congressional testimony last week by the American Benefits Council, “put at risk the availability and effectiveness of workplace wellness programs,” depriving employees of benefits like “improved health and productivity.” The council represents Fortune 500 companies and other large employers that provide employee benefits. It did not immediately respond to questions about how lack of access to genetic information hampers wellness programs.

Rigorous studies by researchers not tied to the $8 billion wellness industry have shown that the programs improve employee health little if at all. An industry group recently concluded that they save so little on medical costs that, on average, the programs lose money. But employers continue to embrace them, partly as a way to shift more health care costs to workers, including by penalizing them financially.

The 2008 genetic law prohibits a group health plan — the kind employers have — from asking, let alone requiring, someone to undergo a genetic test. It also prohibits that specifically for “underwriting purposes,” which is where wellness programs come in. “Underwriting purposes” includes basing insurance deductibles, rebates, rewards, or other financial incentives on completing a health risk assessment or health screenings. In addition, any genetic information can be provided to the employer only in a de-identified, aggregated form, rather than in a way that reveals which individual has which genetic profile.

There is a big exception, however: As long as employers make providing genetic information “voluntary,” they can ask employees for it. Under the House bill, none of the protections for health and genetic information provided by GINA or the disabilities law would apply to workplace wellness programs as long as they complied with the ACA’s very limited requirements for the programs. As a result, employers could demand that employees undergo genetic testing and health screenings.

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While the information returned to employers would not include workers’ names, it’s not difficult, especially in a small company, to match a genetic profile with the individual.

That “would undermine fundamentally the privacy provisions” of those laws,” said Nancy Cox, president of the American Society of Human Genetics, in a letter to the House Committee on Education and the Workforce the day before it approved the bill. “It would allow employers to ask employees invasive questions about … genetic tests they and their families have undergone” and “to impose stiff financial penalties on employees who choose to keep such information private, thus empowering employers to coerce their employees” into providing their genetic information.

If an employer has a wellness program but does not sponsor health insurance, rather than increasing insurance premiums, the employer could dock the paychecks of workers who don’t participate.

The privacy concerns also arise from how workplace wellness programs work. Employers, especially large ones, generally hire outside companies to run them. These companies are largely unregulated, and they are allowed to see genetic test results with employee names.

They sometimes sell the health information they collect from employees. As a result, employees get unexpected pitches for everything from weight-loss programs to running shoes, thanks to countless strangers poring over their health and genetic information.

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  • these politicians need to be prepared to adhere to any bill they pass on the American public, so under this bill they would be tested and charged more for their heath care too they need to be on our retirement and we should vote any raises or benefits no more retiring after 2 terms

  • Those of us that want to hold our Congress and President accountable should use this website:

    https://www.govtrack.us

    It can track YOUR Representative’s votes on legislation. Can track bills in a specific category you have an interest in following etc. You get an e mail of the activity at a frequency you set. I get weekly.
    You can search for any bill. Get a summary or a full text of the legislation. Check it out.

    Here is the sponsor of HB 1313
    Status: Referred to Committee on Mar 2, 2017

    This bill was assigned to a congressional committee on March 2, 2017, which will consider it before possibly sending it on to the House or Senate as a whole.

    Sponsor: Virginia Foxx

    Representative for North Carolina’s 5th congressional district Republican

    Prognosis: 5% chance of being enacted according to PredictGov (details)

  • I heard 1984 made it back on the best sellers list. Maybe required reading. The title has appeared in the press and post MANY times in the last few years. For us old farts that DID read it, there are too many similarities with today’s politics than we are comfortable with.

    Fortunately, there is growing push back on the bill from both sides of the house.

    Anybody got the time to look up the sponsors and co-sponsors of the bill and start informing their constituents in time for the mid terms. Irresponsible legislation should be discouraged by “Your Fired”.

  • This is discrimination like you’ve never seen it. Do you want to open up the floodgates and allow employers to essentially have the right to judge potential employees with the same kind of bias and criteria the Nazis used?

    This is akin to eugenics. If you think discrimination based on obvious and visible disabilities is bad, just imagine what this could mean to tens of millions of Americans who have genetic predispositions to certain diseases or physical or mental conditions.

    We are heading down a path of ethical dilemma like we’ve never known before. When commerce and profit are allowed to utilize previously unknown and unavailable criteria to subjugate individuals it is the beginning of a world where the Darwinian concept of natural selection is being manipulated and accelerated, thereby leading to the genocide of huge swaths of the population.

    This allowing politicians to “play God” on a scale that should alarm and terrify all people. Please study up on this and try to understand where it could lead. Let your mind extrapolate the potential consequences. This is not a place humanity is ready to go.

  • The trouble with this is that we are still in kindergarten when it comes to pinning diseases on genes. A lot of people jumped on that bandwagon when the human genome was sequenced. Turns out to be a lot more complicated than that and very few genes have been found guilty. Instead, we should be looking more at epigenetic causes. Oops, that will not be popular with the pols who voted for this testing. They are also busy trying to make the environment more hazardous to our health.

  • I am open to the debate if legislators agree to genetics testing, with publicly available results, as a condition for running for office.

    And while the meter is running: Why all of this healthcare kvetching when we could simply adopt a measure that provides all citizens with the same health care as the elected? Who could argue otherwise?

    • I agree with JML. Let’s have the genetic information on our legislators. See if any selfish or dishonesty genes appear in the results. As for employees, they get closer to being serfs.

      Even if this weren’t wrong in all ways, why would you do this at a time when honest researchers are admitting that there is no gene causing a lot of the health problems you don’t want your employees to have. It was a bandwagon that everyone got on when the human genome was sequenced. Turns out to be a lot more complicated than that, and possibly in many cases epigenetic instead. Oops, there’s that environmental component that will be very unpopular with the pols who voted for this genetic testing baloney.

  • Jeanne Alberti, “Why should anyone be entitled to your genetic information.”

    Entitled is the key word. If you release your genetic information it should be completely voluntary without coercion, pressure, intimidation, or financial penalty. Full disclosure about how it will be used and your privacy protected prior to your decision to donate. Studying large pools of DNA is very beneficial for medical research. It does not require your personal identity information. You should also be aware that DNA is collected for every service member. The PR is to identify their remains but it is also used for other things not publicized. Similarly, Some state take DNA from convicted criminals to help identify repeat offenders.

  • I’m not a “conspiricy” person at all, but this proposed legislation sends a chill up my spine. At the very least, it’s an incredible intrusion on personal rights and information. At the very worse, it’s a diabolical plan to slowly collect and catalogue DNA fingerprints on every person in this country, the Fourth Ammendment, GINA and ADA be damned.

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