A ‘dangerous delusion’ about your privacy

When you’re watching those commercials that urge you to discover your roots through DNA testing, it all sure sounds interesting.

Why, people are finding new relatives… learning the truth about where they came from… and gaining whole new appreciation for their family trees.

But that’s not all — you can now even find out if you’re prone to major diseases like Alzheimer’s or Parkinson’s. And just last week, the FDA approved a new home test kit to look for a gene mutation that can land you in the highest risk group for breast or prostate cancer.

However, before you order one of these kits online, there are a few important things you need to know about “the story only your DNA can tell.”

Because that “story” may also end up being sold to the highest bidder.

The devil is in the fine print

The FDA has just OK’d the first home test kit to look for the three types of “BRCA” gene mutations that are connected to a higher risk of developing breast, ovarian, and prostate cancer.

So far, not so good!

First, the chances of someone who is not of Eastern European Jewish decent having those particular mutations are nil to none. Even the National Cancer Institute puts it at a high of 0.1 percent. And if you do share that heritage, your chance of having that gene mutation is still only around 2 percent.

So why are companies such as 23andMe going through all of the trouble and expense to get FDA approval?

One reason could very well be that these DNA tests — all of them — are cash cows beyond our wildest dreams. And I’m not just talking about the $159 sale price for a 23andMe “health + ancestry” kit.

The real money comes from companies — often pharmaceutical firms – that are willing to plunk down millions for this kind of information.

Peter Pitts, former associate commissioner of the FDA and current president of the Center for Medicine in the Public Interest, calls it a “dangerous delusion” to believe that the highly personal data gathered when you spit into a cup is being kept private.

According to Pitts, 23andMe has already sold access to its vast genetic database to “at least” 13 drug companies. One, Genentech, gave the firm $10 million to obtain the DNA profiles of Parkinson’s patients.

As Pitts puts it, such highly personal information is being “sold far and wide.” And if you actually read the release that you have to sign before getting your kit analyzed, you’ll find that those little details are spelled out in the fine print.

“I would never sign away the rights to my genes,” Pitts said. “You shouldn’t either.”

And if you’re under the impression that the data has been somehow “scrubbed” of all identifying details, that’s another myth!

A scientist from MIT was able to obtain the identities behind five “anonymous” DNA samples in under a day! That’s because new techniques make it extremely easy to “de-anonymize” this kind of information. And once that occurs, the sky’s the limit for ways it could be used against you – especially by insurance companies or employers.

But even if you’re willing to overlook that potential and go on the idea that knowing what your genes might reveal will help you nip certain health issues in the bud, it’s not nearly as simple as it appears.

Despite the fact that we’ve progressed enough with DNA testing to apprehend criminals, understanding what any test might mean for your future health requires the analysis of someone highly skilled and trained in genetics. And without that sort of expertise, you could be setting yourself up for a lifetime of unnecessary worry.

Even the FDA didn’t think that was such a good idea – it made 23andMe pull its DIY testing kit off the market several years ago because it was “concerned about the public health consequences.”

That was then, however. Now, DNA testing is suddenly fine and dandy, and millions of people are champing at the bit to find out what secrets their genetics will reveal.

But just remember — once you sign away the rights to your genes, you have no idea whatsoever how that may come back to haunt you.

“Test risk of breast cancer from home with new FDA-approved DNA kit by 23andMe” Ashley May, March 7, 2018, USA Today, usatoday.com