Private, mail-order genetic testing has become an increasingly trendy commodity in the past decade. Once primarily used to learn about your ancestry, it’s now marketed as a way to learn about your wellness—from which diseases may be lurking in your genetic history to which specific foods will help you cinch your waste. While these kits may promise to answer consumers’ burning health questions, there are some weighty issues to consider before merrily sending off your cheek swab.
Recently, genetic testing company 23andMe was cleared by the FDA to test its customers for genetic predispositions for 10 diseases and conditions (including Parkinson’s, late-onset Alzheimer’s, and celiac disease). If the name 23andMe sounds familiar, you may remember the company from its troubled history and falling out with the FDA that made headlines in 2013. While the FDA was raising concerns about the accuracy of the testing, 23andMe apparently ignored contact from the regulatory agency and continued with its advertising campaign (until operations were shut down later that year). Yikes!
But the FDA and 23andMe seem to have smoothed things over earlier this year. Now that the company has agreed to abide by government policies and procedures (and perhaps avoid destroying marriages in the process), it’s back to privately collecting saliva samples and analyzing the genomes of its customers (all for the modest fee of $99 per person). In addition to testing for these 10 conditions, this analysis can also provide information about an individual’s risk of developing breast cancer and metabolic diseases as well as one’s sensitivity to certain medications.
While 23andMe’s latest campaign certainly sounds like a potentially beneficial service, it also raises some issues—the most troubling of which concerns the sharing of your information.
As of now, 23andMe ensures that it will only share your genetic information with its research partnerships—anonymously and only with the customer’s consent. Fair enough, yet several journalists have raised questions about how seriously we can take this current policy. While information sharing practices at 23andMe may seem kosher for the moment, there’s no guarantee that they will remain that way.
First, even if the company has the best of intentions, it’s possible that it may not always be able to protect your information. As Charles Seife warns in Scientific American, you don’t even have to participate in 23andMe to be at risk: “If you have several close relatives who are already in 23andMe’s database, the company already essentially has all that it needs to know about you. It is doubtful that 23andMe would be able to protect that information even if it were so inclined.”
Furthermore, there is reason to believe that our right to genetic privacy is under threat as evidenced by a bill that recently was passed by the House: “The bill, HR1313, would allow employers to request that employees undergo genetic testing, with the risk of paying hefty fines if they refuse. It would also give employers access to that data, along with other health information,” science writer Kristen Brown explains. “And it allows for all this without violating GINA or the Americans with Disabilities Act, by crafting a loophole that says those protections do not apply when the tests happen under the guise of so-called ‘workplace wellness’ programs.”
While this development may not directly relate to 23andMe, it illustrates a current trend in policy-making that devalues privacy of information (and that’s not just about our genetic code—our browsing history may also be up for sale in the near future). Indeed, there may be quite a bit at stake when we share our genetic information. For most of us, the immediate concern may relate to our general privacy—if our genetic information is shared, can it be sold to advertisers? Will we be bombarded with ads targeted to our genetic conditions (in addition to what we search for on Google?).
And while this concern is completely valid, another, potentially more ominous prospect shadows the issue of genetic information privacy: Can info about our genes be used against us? Specifically, can insurance companies raise our premiums if they have access to our genetic information and that information indicates that we’re genetically predisposed to a certain costly disease? Could an employer deem that we have the potential to become too sick to be worth hiring?
Also, if our information is out there, beyond our control, is it still really ours? Health writer Tom Masters points out a troubling prospect: “How much of our DNA is really ours? Having discovered a mutation that causes, say, a higher risk of bowel cancer, is a company entitled to patent it? Some companies argue they should be…Others argue that such mutations exist naturally in the human body and that if any patent were to be granted, it would be to mother nature, rather than a commercial interest.” So far, courts in the U.S. have upheld the latter position, but courts in other countries, including Australia, have supported commercial interests in similar cases. If things changed here in the U.S., however, patented genetic discoveries could potentially impede scientific progress and actually get in the way of the good things companies like 23andMe are doing with their data.
This does not mean that no situation merits genetic testing via a private company, of course. Despite the concerns this service raises, it still has a lot of potential to do good. The important thing is to weigh your options and heavily research any testing company that may be interesting. Talk to your doctors, and talk to your family members—what affects you may ultimately affect them, too.
What do you think? Would you try mail-order DNA testing?
Get more like this—Subscribe to our daily inspirational newsletter for exclusive content!