Proposed federal law confirms my “Big Brother” fears

My patients ask me about genetic testing all the time. And my position has always been the same: Don’t do it.

Why? Well, for a few reasons. First, we don’t know what to do with the information once we get it. But the second and third reasons are the ones I want to talk about today: Namely, we don’t know who will have access to the information. And if insurance companies get their hands on the information, chances are they’ll find a way to use it against you.

Some people call me paranoid when I discuss these concerns. And I admit, some of it sounds a little “Big Brother is watching us.”

But what seemed like a far-off hypothetical only a few years ago is coming closer to being reality. And a recently proposed piece of federal legislation illustrates just how quickly things can — and might — go wrong when it comes to sensitive health data.

Let me tell you about an article I just read, and you’ll see why I’m so concerned. And just for the record, this isn’t from some fringe conspiracy theory blog.

It’s from the highly respected mainstream medical publication the New England Journal of Medicine.

The article describes proposed legislation that would weaken genetic privacy protections. Not only that, but it would allow employers to strong-arm their employees into divulging their sensitive genetic information through those workplace “wellness” programs everyone seems to love.

Up until now, we’ve been relatively protected against these kinds of threats. That’s because a slew of federal laws specifically spell out our right to privacy when it comes to genetic information. Furthermore, employers and health plans have been banned from using genetic information when they make decisions about employment or healthcare coverage.

But that could all change with the Preserving Employee Wellness Programs Act (HR1313) that the House of Representatives is considering. The act would eliminate or weaken the protections many people have placed their trust in.

In a nutshell, this law would undermine the principle that genetic information needs the highest level of protections. And here’s why those protections were put into place to begin with: So people can obtain information about their own bodies, and make healthcare decisions based on that information. Without worrying about how that information might be used against them.

But just like that, those protections could be stripped away. Just like I’ve always warned.

It’s scary sometimes how prescient I am.

If this bill goes through, it will allow employers to punish you if you don’t disclose genetic test results. And then it will allow them to discriminate against you because of your genetic predisposition.

As if there weren’t enough discrimination in this country as it is.

If you think I am being dramatic, think again. The ways in which this could go wrong are just staggering.

Here’s one example of how employers could use this information to discriminate against people. Say an employer is racist. Well, certain genetic mutations are more common in African Americans. So they could determine race based on genetic testing, and make employment decisions based on those results. And it would be perfectly legal.

That’s just one of the more nefarious examples. The day-to-day reality would affect all of us. It would leave the door wide open for the programs to share or sell the employee data with others. The data could also be a target for hackers seeking to sell health information.

So, all of this said, I stand by my original argument: Genetic testing has the potential to do more harm than good. And I remain steadfastly opposed to it.