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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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  • Why should anyone be entitled to your genetic information?
    That is the most intrusive idea I have EVER heard?

  • I supported Trump as did my whole family but HR1313 will Destroy America
    If employers choose not to hire people with certain genetic markers then who will end up paying to take care of those individuals? Social Security, Medicaid, Welfare can we IQ test the geniuses that voted for this lunacy. Oh right its Voluntary !! What is Voluntary is the peoples Vote and if the GOP passes this bill it will be seen as a promise broken!! So if you vote for HR1313 go ahead and get your genetic testing done now for your next employer

  • Lucisu Grumane… You employer is NOT going to help cure diseases. They are NOT going to improve their employees health and well being. Wellness programs have not improved their work force’s health. Some and a few benefit. Penalizing you financially for NOT providing them genetic testing is hardly and incentive program. It is punitive. Wouldn’t it be better if they paid you for an hour of your salary for spending an hour in their gym with a trainer? No, they couldn’t improve you health enough in saved insurance costs to cover that cost. So it is NOT about doing their employees any favors at all. They are going to market you diagnoses. Discriminate in your hire or sustained employment. They want to Keep their payment for your health insurance to a minimum AND have information to dispute ANY workman’s comp claim as being ‘not work related’ You heart attack had nothing to do with the 100 degree warehouse you worked in. It was you heart disease that caused it.
    Justin
    “I believe this is properly interpreted as to mean that an Employer or Health Plan is only allowed to collect data on diseases or disorders that have already occurred, not those that might occur because you have a genetic marker.”

    Justin, You don’t need genetic testing to determine what diseases have already occurred. It is called a medical history. That form you fill out for every medical/dental procedure you have performed including your work physicals.

  • Not to quibble, but I believe you are misreading something in the proposed bill. However, you are correct on the general scope and impact as it relates to privacy. Everything hinges upon Subparagraph B. It says:

    “(b) Collection Of Information.—Notwithstanding any other provision of law, the collection of information about the manifested disease or disorder of a family member shall not be considered an unlawful acquisition of genetic information with respect to another family member as part of a workplace wellness program…”

    The key part there is “manifested disease or disorder.” I believe this is properly interpreted as to mean that an Employer or Health Plan is only allowed to collect data on diseases or disorders that have already occurred, not those that might occur because you have a genetic marker. It is one thing for an Employer to ask for additional information on existing illnesses with at least the “guise” of creating a wellness incentive. It is another entirely to charge an employee more money based on a genetic test that establishes the risk that individual might suffer from some disease. While the proposed bill is still quite invasive to one’s privacy, it is no nearly as bad as your article is purporting.

    That said, it would all come down to how the regulations are drafted after a law such as this is passed. If ACA is any indication of how that would go down with this bill, it would be disastrous and my narrow reading would probably not be followed. I am not a fan of ACA or this bill. Legislators and Regulators alike have no idea how the real world works.

    • This is one of the best comments I’ve read on an article in a long time. I have to digest the article, the bill, and your comment some more to really form my own opinion, but I really appreciate someone making a very factual contrarian point on the subject. This is what I always hope to see when I read the comments section, and instead usually get paranoia/conspiracy laden crap with a heavy partisan tilt. So, thanks!!

    • If you read the follow-up article yesterday, you’d see there is no bright line between manifest disease or disorder and not, and genes can be interpreted different ways. Why would an employer need to know this information anyway, if not to fire the employee or make life difficult enough for them to quit? Obviously, wellness doesn’t work or someone would have claimed my $2 million reward by now.

  • Health is not determined by DNA or genetics alone. Environment and diet play a big role. They can change your genes. For example, your chromosome’s telomere can unravel if you have a bad diet, environmental stress, chemicals, etc which would destroy or scramble an organism’s genetic information. This is in turn could cause cancer or as some suggest even allow the passing on of defective genes to one’s offspring.

    • Yes, and consider this… I have Type II diabetes, but control it very well through diet. The risk with this bill is that I could be singled out because of my condition, without any consideration given to how well I manage it, because of my future liability if I “fall off the wagon”. This bill could eventually make me unemployable…

  • Notwithstanding all of your remonstrating 99% of you are AT WILL employees. Go look it up. You can be fired AT ANY TIME FOR ANY REASON, including hiding your genome from HR.

    • Mary Anne A Ryan…
      The Bill provides an opportunity to REDUCE medical insurance clients premiums by VOLUNTARILY submitting genetic information. The key word here is VOLUNTARILY.

    • But if you read the bill carefully, Dave, it is opt out, not opt in. Having worked for corps. in the past, they will not make this clear and will present it as a job expectation and/or charge much more for exclusion of your data.

  • All of it, disingenuous as mental health isn’t taken into account for “workplace wellness”.
    Fit as a fiddle, doesn’t smoke, exercises regularly and eats healthy, BUT must report to an work in an extremely toxic and aggressive work environment, causing stress which can lead to any number of other physical ailments.

    The government, letting employers intrude upon and interfere with employees lives in order to save $ on insurance payouts; make no mistake, they don’t care a single iota for employees’ “wellness”.
    If they did, then they would be taking entirely different approaches to employee benefits, compensation and workplace safety and comfort.

    Knew someone that was threatened with over a thousand $ in additional fees for not participating in their “employee wellness” program while he was made to work in overheated or freezing cold conditions, under brutal bosses and forced to take an hour, unpaid, lunch. Only one 10 minute break and not paid the 10 minutes it takes both going in and coming out; having to deal with searches.
    Sure, they are really interested in “employee wellness”.

    • Relax Dave before you have a heart attack or something.
      Better hope you genetic information doesn’t let your employer know that you have the gene responsible for poor impulse control.

      MY job is wonderful, but that can’t be said for everyone and no, they can’t simply walk off and quit. Apparently, dealing with miserable conditions is secondary to feeding one’s family to some people.

      To you, and evidently the GOP, that’s cowardly.
      The person should be “brave” enough to quit and try to find a better job while they go underwater on their mortgage and their family starves.

    • Lucisu Grumane…

      Anyone who has ever interacted with me already knows that they are getting my absolutely honest opinion, regardless of their feelings. No genetic test is needed. It’s NOT a question of impulse control, it IS a matter of HONESTY.

      Sharing genetic information, and whatever other medical information necessary, to cure medical conditions proactively, is the best way to reduce individual and national health care costs.

      I learned years ago that the JOB is not the problem, but the POLITICS surrounding the job IS the real problem.

    • If you’re really serious about “Employee Wellness” let’s return to the days of yesteryear and bring back the pre-employment physical, which is done AFTER you are hired. When I joined Abbott they checked me out from stem to stern, took all day, and that was for an office job. Let’s say they pick up a potentially serious heart murmur or A-fib. Before they let you drop dead on the company treadmill you would be checked out by the cardiologist and an appropriate program could be tailored for you. These days all you have to quit doing reefer one month before the pee test and you’re in like Flint.

  • Duh! That is the way is currently is. This legislation changes those LAWS.

    Go read the bill PLEASE.

    And by the way HIPPA is ineffective and functionally non existant. I challenge all of you to give me the contact information to file a complaint and violation. I tried. With great effort I found it. When I contacted that Federal agency they denied they were responsible for any enforcement.
    I work in health care. A health care provider is supposed to have a contact to manage, investigate, and report HIPPA violations brought to their attention. I filed a legitimate violation. I just changed e mail providers. The only disclosure of my new e mail address was for an doctors appointment as a new patient. The day BEFORE my appointment I was receiving e mails advertising services for my medical condition. They said they would get back to me. They didn’t. Hence my effort to file a complaint at the Federal Level. Hah!

    You ALL need to understand that nothing that gets connected to the internet is not private. You medical, financial, personal, political views, etc.

    Even though the government says it does not spy or gather information on US citizens without a warrant, they LIE. It is 1984. I play paintball war games and the FBI did a threat assessment on me because of my posts on paintball forums discussing our simulated and safe special weaponry. They wanted to know about my real weapons, my politics, why both of my sons married ‘foreign nationals’ (German and Spanish-Nato Allies) etc. Others in the paintball community have had similar experiences.

  • Good thing the GOP is doing SO WELL at keeping government out of our personal lives. Well done GOP! This is super awesome and not the least bit intrusive! #irony

    • The GOP, to this point, has kept the 500,000 Islamic ‘refugees’ Hilary wanted to plant in our neighborhoods (using American taxpayer money) out of our country to this point. This, despite Democratic opposition which DESPERATELY wants to place people who are ideologically and religiously opposed to our very existence!!

      Quran (9:29) – “Fight those who believe not in Allah nor the Last Day, nor hold that forbidden which hath been forbidden by Allah and His Messenger, nor acknowledge the religion of Truth, (even if they are) of the People of the Book, until they pay the Jizya with willing submission, and feel themselves subdued.”

      Quran (5:51) – “O you who believe! do not take the Jews and the Christians for friends; they are friends of each other; and whoever amongst you takes them for a friend, then surely he is one of them; surely Allah does not guide the unjust people.”

      Quran (3:85) – “And whoever desires a religion other than Islam, it shall not be accepted from him, and in the hereafter he shall be one of the losers.”

      Quran (3:85) – “And whoever desires a religion other than Islam, it shall not be accepted from him, and in the hereafter he shall be one of the losers.”

      Sahih Muslim (2167) – “Allah’s Messenger said: Do not greet the Jews and the Christians before they greet you and when you meet any one of them on the roads force him to go to the narrowest part of it.”

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