While most of the country has been sternly eyeing the proposed revisions to the Affordable Care Act (Obamacare), another bill now before Congress that could cause much more public outrage has flown under the radar.
HR 1313, or the “Preserving Employee Wellness Programs Act,” was proposed by U.S. Rep. Virginia Foxx, R-N.C., chairwoman of the House Committee on Education and the Workforce. What this bill has been advertised to do is clean up ambiguity in current laws and wording regarding the health and wellness discounts and penalties employers can offer employees. Currently, when you get hired, your boss can charge you more for your work-based healthcare insurance if you smoke or if you are overweight, for instance, or a ton of other things.
HR 1313 is an addendum to the laws that allow those penalties, and says if you don’t agree to let your boss genetically screen you, he can penalize you or charge more for your healthcare premiums.
This bill is being debated by the House Education and the Workforce, Energy and Commerce, and Ways and Means committees, all three of which are major panels for the House and help to determine national policy regularly.
If this bill passes, huge groups of Americans are going to be required to consent to genetic testing, with the potential to be marked and tracked by the U.S. government (and/or someone else) in case they need your genetics in the future.
Not to mention, the reason for the screening to begin with is for the insurance companies to find out your predisposition to diseases such as Alzheimer’s or Huntington’s disease, MS, cystic fibrosis or myriad other illnesses that could potentially change how you live your life.
A lot of people don’t want to know they have “increased likelihood” for one of these diseases, and not only don’t want to be told, for example, that they are more than likely going to lose their memory as they age, due to Alzheimer’s, but also are basically told if they do not go through this testing to get this awful news, they are going to be penalized for it.
We believe it should never be a requirement for someone to give up such information about themselves.
It doesn’t get any more personal than your genetic makeup. That is literally who you are, and for the government to push you to put that on display to anyone, regardless of the reason – in this case, a steep insurance discount – is ridiculous.
It’s possible that the only reason this bill is being put to vote is because the government could never pass a bill that says that everyone needs to be genetically screened, because that would be a huge infringement on people’s rights. If the government instead gathers the information under the guise of “healthcare,” those laws and guidelines are already in place.
There are lots of reasons that people can and should give out personal information, but this seems like just a blatant violation of individuals’ rights to privacy.
Also, this can be a Pandora’s box: Once that testing is out there, it can’t be undone. So let’s think about what this could mean in a little hypothetical story: Bill gets a job and his boss says “Bill, if you don’t get screened, it’s going to cost you an extra $50 a paycheck, so that’s an extra hundred bucks a month.”
Not wanting to pay extra money for healthcare, Bill goes to the doctor’s office and gets genetically tested. The doctors tell him there is a good chance he will get cystic fibrosis -a debilitating and very expensive illness to treat – at some point in his life. (Keep in that currently, Obamacare would keep pre-existing conditions from effecting his healthcare, and Trump says he doesn’t intend to change that. However, Trump changing his mind on healthcare would not be a first, and what’s to say some administration/Congress down the road doesn’t change the preclusion clause.) And now here’s Bill, pre-diagnosed with an ultimately deadly illness, and no insurance to help him get treatment because he was pressured and basically forced to get genetic testing done years before.
Not the least, here, to mention the hulking elephant in the room on this issue: How likely is it that if thousands and thousands of workers are basically forced to put their genetics on file, that the government is not going to have access to it?
Under an administration that condones waterboarding and torture under the guise of national security, it’s not a far leap to fear there would be agencies that would access genetic information to track people, or even to profile potential lawbreakers and dissidents.
As George Orwell wrote, “If you want to keep a secret, you must also hide it from yourself.”
Though we are in the year 2017, it feels like we are marching ever forward toward 1984.