I must begin this article by saying I CANNOT BELIEVE this article has to be written, but it does. The Trump administration is moving forward with legislation to slap stiff financial penalties on Americans who refuse to share their genetic data with their employer. I will let that sink in for a minute, because sadly this is not fake news…
…and if you’re one of those people who, like me, thought this news sounded so bizarre and Orwellian that you didn’t believe it when you first read it, here is a link to the legislation, called H.R. 1313 in the official U.S. congressional record. H.R. 1313 is real. It is not fake news. And according to the National Law Review, which is not known for making up stuff, this very real bill is moving forward:
On March 8, 2017, the House Committee on Education and the Workforce approved a bill, H.R. 1313 – Preserving Employee Wellness Programs Act, which would allow employers to require employees to undergo genetic testing and share such information under a workplace wellness program.
Bear in mind that the National Law Review is published by lawyers, and they chose their words carefully. Despite the seemingly innocuous title of this legislation, it does indeed do what NLR say it does: put your genetic data into the hands of your employer. For example, your boss could find out that you are a carrier for cystic fibrosis or sickle cell anemia, Tay-Sachs disease or hereditary hemochromatosis (HH). The last of these is the most common autosomal recessive disorder in America. HH is sometimes referred to as Celtic Curse or orange diabetes and results from a mutated HFE gene. Here’s how the leading patient support group describes HH: It’s Real • It’s Common • It Can Kill You.
Not all of the 1 in 250 white Americans who carry the HFE mutation will require expensive long-term healthcare, but many might, and I think you can imagine the impact that knowing an employee is HH-positive could have on an ethically challenged and/or cash-strapped employer.
Why H.R. 1313 hurts us all
Now, if you work for someone whom you trust to keep your genetic secrets a secret, and if you haven’t had much experience with genetic defects, this whole H.R. 1313 thing might not sound problematic. So let me ask you this: what genetic defects do you have? Have you been screened for genetic defects? I have, and so has my wife. And she has hemochromatosis, a condition that left her life in ruins after it darn near killed her (she has been recovering in recent years, but is still unable to work).
If you haven’t been tested for such a condition it is possible that you have genetic issues that you don’t know about. You might be interested in getting tested but also concerned about who would have access to the results. Well, under H.R. 1313, genetic testing becomes a whole lot less optional. It can be demanded by an employer, of you, or your parents or siblings. They might get genetically tested at work to avoid thousand of dollars in health plan surcharges. If they find out they have HH, then their bosses and the insurance companies will know there’s a good chance you too are a carrier of HH, and your children may be HH positive.
The massive irony here is that the negative effects of HH can be averted through prudent genetic testing. In other words, if your doctor suspects you have hemochromatosis symptoms – like massive fatigue, elevated iron levels, joint pain, and loss of libido – she will recommend the HFE test, which has been around since 1996. If it turns out you have the mutation, then a course of treatment can be set up and you can have periodic checkups to monitor your condition.
If all of this is caught soon enough, it may be possible to avoid permanent organ damage (if not, then you may need one or more operations: my wife had to have her gall bladder removed and shoulder joints worked on; some of her relatives required liver, lung, and heart operations as well as joint replacements). Fortunately, with early detection, there is even some good news: early stage treatment is often inexpensive (excess iron can be removed by giving blood).
Unfortunately, there is potentially bad news for anyone who tests positive for any autosomal recessive disorder, whether it is hemochromatosis or something else, and this is where the truly pernicious nature of H.R. 1313 manifests itself. If you test positive then you know your parents were carriers, as were their siblings, and potentially your siblings and their offspring, and of course your offspring. In the more than eight years since my wife was diagnosed and I started to work on raising hemochromatosis awareness, I have interacted with thousands of hemochromatosis sufferers and heard hundreds of stories about how things did not go well. Having to tell your family members that you have a genetic defect that requires treatment and monitoring and changes in diet and lifestyle is bad enough. but then you have to tell them they’re possibly in the same boat and should also get tested. The words messenger and shoot immediately come to mind.
Fearing for GINA
I also discovered that a significant percentage of Americans are flat out opposed to submitting to any genetic tests, and that attitude clearly impedes our ability as a society to enjoy the benefits of genetic medicine. One of the biggest objections is the potential for discrimination, particularly by insurance companies, but a broader concern is inability to control who has access to the results. That is why Americans have GINA, the Genetic Information Nondiscrimination Act (GINA) of 2008.
If GINA had not been in place when my wife was diagnosed we would have thought thrice about going public about her condition, even though we felt that might be a good way to raise awareness and help others. But now GINA is at serious risk of being bypassed. Here is Nancy J. Cox, PhD, president of the American Society of Human Genetics, in a letter to the U.S. House Committee on Education and the Workforce:
If enacted, this legislation would undermine fundamentally the privacy provisions of the Genetic Information Nondiscrimination Act (GINA) and the Americans with Disabilities Act (ADA). It would allow employers to ask employees invasive questions about their and their families’ health, as well as genetic tests they and their families have undergone. It would further allow employers to impose stiff financial penalties on employees who choose to keep such information private, thus empowering employers to coerce their employees into providing their health and genetic information.
To put this in the context of a condition like hereditary hemochromatosis, imagine you are trying to convince relatives to get over their fears about genetic testing and discover their HFE status, knowledge of which is undoubtedly of benefit to them and their loved ones. They raise privacy and discrimination fears, so you reply “but we have GINA,” and they say “but what about H.R. 1313?”
When I say that H.R. 1313 is the most pernicious piece of legislation I have ever read, you might think my involvement with hemochromatosis is messing with my objectivity. But it is precisely that involvement, knowing how hard it is for society to deal with genetic health issues, even in the best of circumstances, that convinces me this is truly dreadful lawmaking (that makes the circumstances worse).
As you can tell from the dates on the articles on this site, I have not been very active in the hemochromatosis awareness effort in recent years. That is mainly due to the demands of my job (I’ve been the sole breadwinner for more than a decade, due to the hit my wife’s health took from undiagnosed hemochromatosis). That and the fact that I went back to school for two years to get my masters degree (c.f. need to win bread). But I have been monitoring the Facebook page on Hemochromatosis all this time and there has been no let up in the mournful messages of mis-diagnosis, under-diagnosis, and loss.
Dealing with a genetic condition can be painful, even if it is not causing you physical pain. For example, if you discover you have hereditary hemochromatosis one of the first blows may be the realization “that’s what killed my _____” where _____ could be mother, father, brother, aunt. Do we really want employers, some of whom are not as empathetic and supportive as they should be, getting all up in this?
If you share my sentiments on H.R. 1313, please let your elected representatives know. Your voice can make a difference. If you want to know more about hemochromatosis, the articles on this blog should be helpful and you can learn even more at the website provided by the leading non-profit advocating for greater awareness and better care. I will be tweeting news about H.R. 1313 with the hashtag #HR1313, using @CelticCurse, @Zcobb, and @TheStephenCobb.