The company calls itself “23andMe.” It’s a reference to the 23 pairs of chromosomes that express your unique genetic make-up.
More than 5 million people have sent their genetic material for analysis. 80% of them say the company can share their genetic data for research.
And share the company does. They’re selling your data to drug makers, research labs, and universities. In fact, it’s their big moneymaker.
Now, two new developments may change just how “private” your genetic privacy really is.
That’s why I’m sending out this urgent alert.
Big Pharma’s Big Play for Your Genetic Data
That’s nice. But a new partnership may be the first step in eroding that policy.
Drug maker GlaxoSmithKline just invested $300 million in 23andMe. Which includes a 4-year data-sharing partnership.
This could be a problem. As Gizmodo noted in April of 2017, “Though to be fair, it’s debatable how anonymous that data really is.”
“In one case,” they report, “researchers were able to find out a man’s last name using only the short repeats on his Y chromosome and access to a genealogy database.”
In other words, if they want to find out who you are, they probably can.
That could be a problem. But another issue may be worse.
If insurance companies – or employers – can demand your DNA profile, you may wind up out of work… out of coverage… and out of luck.
That’s where Congress comes in.
Kiss Your Privacy – and Maybe Much More – Good-bye
Back in 2008, Congress saw dangers in DNA testing.
- Employers might not hire folks at a high genetic risk for some health issues.
- Insurers might charge them higher rates. Or simply deny coverage
So Congress passed the Genetic Information Nondiscrimination Act of 2008 (GINA). The Act blocks the use of your genetic information by employers and insurers.
You see, a “genetic predisposition” doesn’t prove anything. And Congress felt companies shouldn’t discriminate on the basis of genetic risk.
So they banned the practice before it could take hold. Now, those protections are under attack.
The “Preserving Employee Wellness Programs Act” would exempt workplace wellness programs from the genetic testing ban. And employees who refuse genetic testing may even be fined.
Congress Is Rolling Back Your Privacy Rights
This new act creates three exemptions to the Americans with Disabilities Act of 1990 (ADA) and GINA.
- It rolls back protections under the ADA
- It lets health insurers collect DNA data
- It lets companies collect genetic information on employees’ family members.
That’s right: Congress may make your genetic information available to employers and insurance companies. And punish you if you don’t cooperate.
The “Preserving Employee Wellness Programs Act” (H.R. 1313) has already passed its first committee. All Republicans voted in favor. All Democrats opposed the Act.
If this act passes Congress, employers will be free to demand DNA tests… and who knows where that could lead?
One thing, though, is clear. Big Pharma and the insurance industry both want your DNA data. And the only one who can lose in that scenario is you.
If you’re concerned about your genetic privacy, you need to make yourself heard. Contact your senator and congressperson and let them know you oppose H.R. 1313. You can find their contact info at https://www.congress.gov/contact-us.
About the Author: Jason Kennedy is a celebrated investigative health writer and the author of The X-Factor Revolution and Beyond the Blue Zone. With over 10 years of experience working with today’s leading alternative and anti-aging doctors, Jason shares his insider status and access to the latest breakthroughs with thousands of readers from around world.
Cookson, C. and Samson, A., “GSK invests $300m in gene profiling group 23andMe,” The Financial Times. Jul 25, 2018.
Brown, K.V., “23andMe Is Selling Your Data, But Not How You Think,” Gizmodo.com. Apr 14, 2017.
“Genetic Information Nondiscrimination Act,” Wikipedia. Apr 3, 2018.
“H.R.1313 – Preserving Employee Wellness Programs Act,” Congress.gov. Dec 11, 2017.
Brown K.V., “Why We Should All Be Worried About Congress Eroding Protections Against Genetic Discrimination,” Gizmodo.com. Mar 16, 2017.
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