RHJ 17-16A FB Final

Workers are currently protected from having to take genetic tests for employers. However, a bill under consideration in the US House—HR1313—would allow corporate wellness plans to ask workers for a test, and penalize them through markedly higher health insurance premiums if they refuse. The bill also provides no protections against how or to whom the information is distributed.

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  • Dr. Derek Scholes, Director of Science Policy, American Society of Human Genetics
  • Dr. Arthur Caplan, Director, Division of Medical Ethics, New York University
  • Dr. Jon Robison, co-founder, Salveo Partners employee well being consulting firm

Links for more information:

Workplace genetic testing

Reed Pence: Genetic testing carries enormous amounts of potential and peril. Tests can be used to find the risk of future disease and point the way toward preventing it, but in the wrong hands that same information can be used to deny insurance or terminate employment. And people’s fear of that was made clear early on. Dr. Derek Scholes is Director of Science Policy for the American Society of Human Genetics.

Dr. Derek Scholes: The origins of when the fear of genetic discrimination first came to light was during the early years of the Human Genome Project back in the 90’s when we understood that in future years we’d know a lot more about peoples genetics. But people were fearful of the potential discrimination so they were fearful of undergoing standard testing or for that matter, participating in the research needed to develop the research.

Dr. Arthur Caplan: There was a great fear back in the 2000’s that people were avoiding genetic tests for breast cancer, Huntington’s disease, other disease and risk factors that might be detected through genetic testing. Because they thought they would lose their health insurance, they thought that they might be discriminated against in terms of being hired for employment because employers frequently cover health insurance costs.

Pence: That’s Dr. Arthur Caplan, Director of the Division of Medical Ethics at New York University. He says Congress passed a landmark genetic privacy law in 2008 to help ease those fears; it’s called the “Genetic Information Non-Discrimination act” or GINA.

Caplan: GINA was intended to say, “look those risks are off the table and employers can’t see them and don’t worry, you can’t use them to write out something that’s detect by a genetic test.”

Scholes: GINA has two overriding protections: 1. One cannot discriminate, 2. Employers can’t even ask for the information. And though it does not take away the fact that if one were to discriminate – such as firing someone because of a particular genetic profile – it does not take that way that would still be illegal. However, the reason why GINA and in fact the ADA have these privacy protection is that it’s difficult to demonstrate when genetic discrimination or discrimination based on health factors had actually occurred. So the logic behind the laws is that if you restrict the employees from having access to the information, they can’t use the information to discriminate if they don’t even have access to the information.

Pence: Employee wellness programs have more latitude, but just a little. They can ask employees in a ‘health risk assessment’ about their family medical history and genetic tests they’ve had. But the employee doesn’t have to answer.

Scholes: They’re allowed to ask the questions but answering those questions is completely voluntary. They can’t be rewarded for answering the questions nor can they be penalized for choosing to keep their information private.

Pence: But all that would change if a bill in Congress – HR1313 – becomes law.

Dr. Jon Robison: The name of the bill is what? ‘The Preserving Workplace Wellness Programs Act’ – we call that, and this is a term I actually coined, we call that the “Preserving Wellness Or Else” program.

Pence: That’s Dr. Jon Robison, Co-founder of the Salveo Partners Consulting firm, which specializes in employee wellbeing.

Robison: It’s really a follow up to the ‘Safeway Amendment’ in 2010 which began this whole idea of, well it didn’t begin it but really pushed it to the forefront, this idea that companies could say to their employees, “If you don’t participate in this program, we will fine you.” So this is really what I term a “slippery slope” of that.

Scholes: What the Safeway Amendment says is that – if there is a reward for participation in a wellness program or a penalty for non-participation in a wellness program, then there are no limits on that if it’s merely for participation. However, if it’s for a health contingent program they’re allowed to vary it by up to 30-50% of the total cost of coverage. Just to put one or two numbers on it – a Kaiser Family Foundation survey that looked at this every year and the average cost is around $18,000. So if you, for such a plan, under the Affordable Care Act the maximum penalty you could be asked to pay for not meeting the health standard assessment it would be close to $9000. So that would be on top of the premiums you’re already paying.

Pence: In other words, Scholes says, the law now says that if you refuse to participate in the wellness program, you can be forced to pay 50% more for your company sponsored health insurance that if you’d said Yes. HR1313 would extend that, so GINA would no longer apply to wellness programs. The effect of this? Wellness programs could demand that you take a genetic test or be fined thousands of dollars.

Scholes: What HR1313 would do, it would negate those protections so that participation in wellness programs that includes giving up genetic information or testing would not longer need to be voluntary. One could be coerced financially into providing that information and penalized if one choses not to participate in a wellness program.

Pence: And that’s not all, Caplan says if you’ve ever had a genetic test in the past a wellness plan could demand results of that too.

Caplan: The way I read this bill which is moving through the House of Representative at the Federal level is, it makes all genetic information available to the wellness program, not just new testing but prior testing. So if you know you have a genetically based disease or you once sent your DNA off and got a report on it back from one of the commercial companies or maybe because you had a risk factor in a relative, you got genetically tested. Oh, that should be fair game for the wellness company to look at and ultimately I would think they HR department to take a look at. By the way, one other thing to keep in mind, that giving up genetic privacy – when we’re talking genetics tests tells us things that not only about ourselves but about our biological relatives; our siblings, our children. They might not have signed up for anything, which is to say that information about them wouldn’t be used against them when they went to get a job.

Pence: So what would a wellness program do with this information in the first place? The trade association, WELCOA, which represents thousands of wellness program firms doesn’t seem to think that they need it. They’ve come out against the bill and Caplan says a lot of the information in a genetic test isn’t worth much to a wellness plan.

Caplan: The genetic testing for many of these conditions isn’t particularly accurate. There are a lot of variations and mutations and differences that make it harder to say, “Oh you will have developed diabetes with certainty or even with a very high risk” sometimes you’re saying, “Oh you have a 10% more chance, we think.” A lot of the databases also don’t work for people who are Asian American or Indian American or Korean American; they haven’t been tested on those groups whose genes have been analyzed necessarily apply there. And so, many people would argue wellness programs don’t need genetic risk information and they should not have access to that. You shouldn’t get rid of GINA, you should in fact simply say, “Look, if you’re gonna have a wellness program you can get all you need to get by taking some blood pressures, weighing people, asking people to pee in a cup in terms of smoking or drug use, and this genetic thing is just going to far and it isn’t accurate enough to justifying going there anyway.”

Scholes: You don’t need someone’s genetic information to organize a walking club, or a brown bag lunch that teach about your diet, or tobacco cessation program. These are the kinds of things we can all benefit from regardless of your genetics its good to exercise, it’s good to eat a healthy diet, and it’s not good for your health to use tobacco products. So it’s not clear to us how they would hope to use genetic information in a way that would provide programs that improve employee health.

Pence: But some wellness programs say that genetic testing has a place in what they do. They say testing could help them better target their efforts to save both lives and money. And Scholes says, done correctly, that could be true.

Scholes: So for instance, within clinic in the work place a woman might do a family history survey and based on that realize that several members of her family have breast or ovarian cancer, so then the wellness program might recommend that they undergo genetic testing to see if they have a variant that increases their risk of breast of ovarian cancer. Based on that they might recommend whether they should have prophylactic surgery. All of those programs we would argue are very good and worthwhile but the point is it should be voluntary – one should not be coerced into going to the programs and giving up their information or penalized thousands of dollars. Just like one would not be penalized thousands of dollars for not going to the doctors and so on.

Pence: Robison says, if HR1313 passes, the coercion that’s possible could mean that wellness programs do more harm than good.

Robison: Where the real savings can really be had in business is that miserable engagement levels that we have. I mean we’re around 30-32-33%, I mean we’re talking about probably half a trillion dollars a year and you’re not gonna improve engagement by telling people what to do and fining them if they don’t do it. I just think that’s a really really bad way to go and this is gonna make it worse.

Pence: And Robison and Caplan wonder, why would your corporate plan have so much power over your genetic information when wellness programs themselves don’t even work?

Robison: You know if you look at anything but vendor sponsored research since 2010, there’s no research that supports that these programs either save money or improve health. I mean if you look at people like the Rand Corporation, I mean they’re saying that these programs don’t even pay for themselves.

Caplan: The wellness programs themselves have not be, I would say, extensively evaluated. But the evaluations that have been done don’t show that they work very often – they don’t really get permanent change in blood pressure, or weight, or diabetes control, or stopping smoking or drinking. They may get an initial response, but pretty soon everybody slips back to the bad ol’ habits. So, question becomes why would I even risk my genetic privacy for testing that isn’t accurate, in a program that doesn’t work very well, that might get seen by the boss?

Pence: And that is probably the biggest objection of all to HR1313.

Caplan: The wellness program gets the data, what’s to stop them from sharing it since they’re under a contract with the boss, with the employer? And I do think that is a huge hole put in the dike that GINA was meant to prevent – information flow back to the boss about, not just your genetic diseases, but genetic risk factors.

Scholes: A wellness program vendor would no longer have to abide by such a restriction and actually would be no law, in some cases there would be no law that would require them to keep the information secret at all. So they could share it with the employers, they could share it with other companies, they could sell the information, and there would be no restriction. So that is a concern of ours.

Pence: Robison is co-founder of an organization that’s proposed a code of conduct for wellness programs that includes a refusal to share information without permission. That group is online at EthicalWellness.org. Without safeguards, if HR1313 is approved, Scholes says genetic research could be right back where it was in the days before GINA. When people were afraid to sign up for the Human Genome Project. Just what scientists don’t want as they try to recruit a million people for the Precision Medicine Project – scientists fear that research will grind to a halt if everyone’s genetic information is an open book. You can find out more about all of our guests on our website, RadioHealthJournal.net. I’m Reed Pence.

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