A new bill is quietly making its way through Congress that could bring the US a little closer to a Gattaca-like future in which employers could discriminate against their employees based on their genes and risk of disease.

To understand how we might get to Gattaca, lets back up. Under Obamacare, employers are allowed to offer employees deep discounts on health insurance premiums if they participate in workplace wellness programs. The programs often involve medical questionnaires and health assessments which has meant employers can get access to some of their employees personal health data.

Employers embraced the wellness programs. Insurers love them. The Obamacare incentives helped grow the giant workplace wellness industry. And the workplace wellness provisions in the law were some of the only parts of the ACA that received enthusiastic bipartisan support.

Now this new bill, HR 1313 or the Preserving Employee Wellness Programs Act seeks to clarify exactly how much personal health data employers can ask their employees to disclose. And in doing so, the bill also opens the door to employers requesting information from personal genetics tests or family medical histories.

Unsurprisingly, HR 1313 has captured the medias imagination. Vanity Fair suggested the bill could make one sci-fi dystopia a reality. Fortune said workers might soon be forced into genetic tests. On NBCs Meet the Press yesterday, Health and Human Services Secretary Tom Price was asked about HR 1313 which is part of a set of bills that seek to replace pieces of Obamacare and said it sounded like there would be some significant concerns about it.

I reached out to two health law professors the University of Michigan Law Schools Nicholas Bagley and Washington and Lee University School of Laws Timothy Stoltzfus Jost for help parsing the legislation.

As it turns out, employee wellness programs were already very intrusive of employees privacy. It also turns out theyre a bit of a sham and dont work nearly as well as supporters might have hoped to make people healthier or bring down health care costs. But the new bill would allow employers to dig even deeper into participating employees personal health information. While employees wouldnt be forced to join the programs or hand over their genetic test results, theyd have to pay hefty penalties for opting out.

There are four main ways HR 1313 would allow workplaces to access more of their employees personal and family health histories, and potentially use that information to discriminate against their workers:

1) 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 didnt participate couldnt get that discount, and therefore paid more for their health insurance.

The health assessments or questionnaires might probe into peoples medical histories, and this created friction with laws such as the Americans With Disabilities Act (ADA). The ADA says employers cant ask their employees to undergo a medical history unless that request is made through a voluntary wellness program. And a 30 percent surcharge is a pretty large sum of money more than $5,400 for the average family plan in 2016 so opting out may not feel optional for many people.

To try and resolve this legal tension, the Equal Employment Opportunity Commission (EEOC), an independent agency involved with overseeing compliance of the AD, got involved in 2016. It determined that if the ACA allows this surcharge, then employers are in compliance with the ADA, meaning that its okay for employers to charge workers who dont opt in to the programs.

The legal ground for that ruling is shaky, according to Bagley, who blogged about the bill at the Incidental Economist. But the new bill would cement the EEOCs interpretation of this: Its also resolving in statute the tension between the ACA and ADA and Congress has never done that before. That means this provision of the ACA would no longer be subject to legal challenges in court, Bagley added.

And so under the new bill, if it passes, if an employer has a medial history questionnaire as part of a wellness program, a worker would need to choose between completing it and paying that surcharge.

2) Second, the bill would allow employers to ask about an employees family medical history or risk paying a surcharge.

Right now, under the Genetic Information Nondiscrimination Act (GINA), wellness programs cannot inquire about an employees family medical history. The reason for the prohibition is simple: If youre 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.

Stoltzfus Jost explained: This keeps employers and insurers from discriminating against people with health problems or genetic predispositions. It also gives people the peace of mind of knowing their employer doesnt have that information.

The new bill would amend GINA and allow employers to start asking about family medical history for the first time. Those who refuse, again, would face that 30 percent surcharge.

So this also leaves employees in a tough spot. It means theyre now open to potential genetic discrimination by their employer or insurers. As Bagley wrote on his blog, Employers arent supposed to use that kind of information to discriminate against you. But theyll be sorely tempted: through your employer-sponsored coverage, theyre on the hook for your familys medical expenses.

3) Third, employers would be able to demand your personal genetic information unless you pay a surcharge.

Under GINA, employers only have the right to access anonymized aggregate data about their employees health thats collected as part of a wellness program. This was already controversial, since in workplaces with a small number of employers it might be easy for employers to tell which employees data they were looking at.

The new bill, once again, goes further: It says that if an employer runs a wellness program that complies with the ACA, then its 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 shes susceptible to breast cancer, for example.

This, too, is not mandatory per se but if you refuse to give that information, you face that 30 percent surcharge. And again, theres that pesky discrimination problem. Employers aren't supposed to use sensitive information to discriminate, Bagley said, but the whole reason that statutes like the ADA and GINA keep that information from employers is because there's a risk that they may use it anyhow. In a worst-case scenario, for example, they could drop an employee who is at a high risk of a costly genetic disorder.

4) 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 Trumps Cabinet members.

This is a big shift of authority away from an independent agency that thinks a lot about discrimination to agencies that dont have the same mission and are more subject to the control of the president, said Bagley.

Wellness programs by their nature intruded on employee privacy. In the programs health assessments, they probed into how many hours workers slept, what food and alcohol they ate and drank, and how much they exercised. Thats part of the reason theyve been so controversial.

Many of the news stories on this bill suggest HR 1313 came out of thin air; it didnt. It simply builds on Obamacare provisions by clarifying exactly how much employers can peer into their employees health histories and genetic information and it empowers employers with even more oversight, leaving workers once again in the position of choosing between affordable health care and their privacy.

Employees in places with these wellness programs were already forced to make that choice; under HR 1313, theyll simply have even more to worry about, like whether they want their employer to see the results of a genetics test they had during a pregnancy, or to know that their spouse or mother had cancer or depression.

As Stoltzfus Jost of Lee University summed up, The bill expands or eliminates the employee protections that were pretty weak already.

This is worrisome for anyone concerned with genetic discrimination, genetic privacy, or disability rights, which is why groups like the American Society of Human Genetics have opposed the bill.

Meanwhile, theres actually no good evidence that these wellness programs actually do what theyre supposed to do improve health and bring down health care costs so employers fondness for the programs may be dissipating, Bagley added.

For now, HR 1313 has already been marked up by the House Education and the Workforce Committee, and its now up to House leadership to decide on when to vote on it. Hopefully lawmakers will pay attention to the privacy and discrimination issues and the lack of evidence for wellness programs as the bill moves through Congress.

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A new bill would allow employers to see your genetic information unless you pay a fine - Vox

In 2008, Congress passed the Genetic Information Nondiscrimination Act to prevent employers and insurance companies from discriminating against Americans based on their medical records.

Now a House committee is taking steps to remove GINAs protections.

On March 8, the House Committee on Education and the Workforce narrowly approved HR 1313, which could allow employers to require genetic testing as part of a workplace wellness program. Employees could face financial penalties if they refused.

The idea behind this is to make employees healthier and reduce health care costs for companies. But medical ethicists argue that this is not only unethical, its scientifically incoherent. Simply put, an employer wouldnt be able to glean anything particularly useful from commercially available genetic testing.

Theres this notion that somehow we could give you a genetic test and find out your risk factors and control them or monitor them,Arthur Caplan, the founding director of New York Universitys Division of Medical Ethics told The Huffington Post.Thats science that isnt here yet.

Dr. Lainie Ross, professor of clinical medical ethics at the University of Chicago Medicine, said,Were advancing in our understanding of genetics, but were nowhere near being able to say, Because you have this gene, you definitely should take this medicine or not.

Even Dr. Tom Price, the former orthopedic surgeon and Affordable Care Act opponent who now heads the Department of Health and Human Services, expressed reservations about HR 1313.

Im not familiar with the bill, but it sounds like there would be some significant concerns about it, Price said Sunday on Meet the Press. If the departments asked to evaluate it, or if its coming through the department, well be glad to take a look at it.

In 2015, the Food and Drug Administration cautioned that some laboratory tests could harm patients because they led to false diagnoses and unnecessary treatments (the agency later withdrew its regulatory proposalsand left lab test regulation up to President Donald Trumps FDA commissioner and Congress).

In fact, in a study in which researchers gave nine labs a genetic variant and asked them to analyze it, the labs gave different answers 22 percent of the time.

Even if everyone agrees that a genetic variant can cause disease, the actual risk to an individual of developing that disease is not that clear, Heidi Rehm of Brigham and Womens Hospital told the STAT health news site. That risk depends on environmental factors as well as other genetic ones, but truthfully we dont know what those factors are.

Forced genetic testing could push highly personal, sensitive and potentially inaccurate informationon individuals who may not want to know if they have specific health risks, particularly if they carry genetic mutations for serious or incurable conditions.

Genetics is based on probabilities, not certainties. So, although a test may find that you have an increased risk of breast cancer, to use one example, that does not mean you are certain to get the disease.

It maypush people into seeking out untested treatments or treatments that they really dont need because they come from a low-risk family, Ross said. Its not good medical practice.

Then theres the possibility that employers and insurance companies could use genetic information (which might not even accurately represent disease risk) to discriminate against employees and customers. Insurance companies could potentially charge people who show a risk for certain genetic conditions higher premiums, and unscrupulous employers would have the ability to make hiring and firing decisions based on employee health.

Theres also the dicey question of which genes employers and insurance companies might choose to look at.

Cherry-picking who gets insurance could potentially stigmatize one group of people.

We all have health risks. Were all going to die, Ross said. This is all about risk, and we want to share the risk.

Workplace wellness programs are popular (about half of U.S. companies with 50 or more employees had workplace wellness programs in place, according to a 2013 report from the nonpartisan Rand Corp. think tank), but theres not much evidence that such programs improve employee health.

Most of the studies that do exist fail to prove causation, show only short-term effects or are written by the wellness industry,according to The New York Times. The more rigorous studies are more likely to show that wellness programs neither save money nor improve employee health.

Thats not to say health and wellness shouldnt be employer priorities. But workplace wellness programs that incentivize and penalize employees based on their health are fundamentally unethical, according to Caplan.

The notion that your boss is in the best position to monitor your health is morally tenuous, he said. For example, your boss doesnt care if your job is stressing you out. Theyre not going to fix that. Theyre just going to tell you to lose weight.

If your boss really cares about your health, then they can build a gym and incentivize you to go down there when they give you that extra 30-minute break.

See the article here:
Workplace Genetic Testing Isn't Just Unethical, It's Scientifically Unsound - Huffington Post

Asking whether or not we really have free choice is a metaphysical question, perhaps left to those in the movie The Matrix. But throughout our lives,the decisions we make areinfluencedas much bypersonal choices as they are by genetic wiringcreated by millennia ofadaptations.

Consider the simple act of eating. We may think our food consumption isdriven byspur-of-the-moment choices. But the reality is that our individual genetics play a major role in thepleasure we derive from eating. Our physiological response to food (anticipation, selection, consumption, satisfaction) is based in a complicated reward system in the brain involving the mesolimbic network, as well as neurotransmitters such as dopamine. There is a question that stems back to at least the ancient Greeks: Inone version, Hera asked Tiresias, who derived more pleasure from sex, men or women? (Spoiler: Apparently women do 9x more!) Of course its rhetoric, but similarly, we cant assume and shouldnt presume that one persons experience with eating behaviors is the sameas anothers. This could be at the root of why some people find dieting so miserable and difficult, while others find iteffortless.

Do you really consciously choose what you will do?

Why do we think its genes?

Its been established that a series of gene variants is associated with addiction, which is an aberration of the brains reward system, and that these gene variants are heritable (having an alcoholic or other drug addict in the family increases the likelihood that others would be found to have addictive behaviors). More research must be done, butits a good bet that the two (drug cravings and food cravings) are closely linked in the brain.

An interesting look at this issue from a different direction can be found in the workings of the drug Contrave (a combination of bupropion and naltrexone) approved in 2014 for treatment of obesity. Bupropion has shown effectiveness as an appetite suppressant, while naltrexone blocks the effects of opioid drugs removing the reward offered to addicts.

One of the things we learn is thatthere are similarities between drugs and eating at least in terms of the pleasurederived by users. Naltrexone(and the similar naloxone) work through a direct and interesting mechanism: They prevent or reversethe effects of opioids by blocking opioid receptors, thereby preventingthe drugs from having an active site to dock and cause physiological activation.

Many drug overdoses lead to death because of respiratory depression, sedation, and hypotension (low blood pressure). By halting these drug effects, doctors have successfully revivedopioid usersfrom unresponsive states. Naloxonealso can reverse the negative mental and mood effects ofcertain drugs.

In those people using it for weight loss (as a component of Contrave), the drug modifies the response to the pleasure and craving of food in much the same way that it stops drug cravings.The person never feels the high he or she would typically experience fromeating.

Establishing further connection between genetics, brain architecture and food cravings, Contrave has been suggested to work bystimulatingneurons in the hypothalamus to generate theappetite-suppressant effect, whileblocking feedback mechanisms in the brain.

Researchersof Contraves dual mechanism of actionalso suggest that itmight have effects on themesolimbic reward system, adding, that this may lead to further weight reduction by modulating reward values and goal-oriented behaviors.

So certainly which foods we find desirable is in part influenced by our genetics, as well as our life experiences. But how effortful we need to be in our vigilance to avoid or reduce certain trigger foods may have more to do with the neurobiological effects of addiction than we may like to think.

Ben Locwin, PhD, MBA, MS, is a contributor to the Genetic Literacy Project and is an author of a wide variety of scientific articles in books and magazines. He is an expert contact for the American Associationof Pharmaceutical Scientists(AAPS), a committee member of the American Statistical Association (ASA), and has been featured by the CDC, the Associated Press, The Wall Street Journal, Forbes, and other media outlets. Follow him at@BenLocwin

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Overeating? As with drug use, genetics may drive our choices - Genetic Literacy Project