When at-home DNA testing kits started to pop up everywhere, they promised to help us figure out all kinds of things about ourselves. Unknown ancestry and long-lost relatives, disease risk, which diet is right for your genetics, which workout is right for your genetics…even which skin-care products your body would respond to.
I was curious, both as research for the blog but also for myself personally. Would taking a genetic test reveal some secret truth about my body or history that would help me live a healthier, happier, fuller life? (I don’t know…royal blood maybe? Or at least an efficient metabolism?)
So, in 2016, I ordered the 23andMe kit, and mailed my spit away.
I’ll skip to the punch line: it was a total snore, which I guess is good news. Instead of startling discoveries, it confirmed I had the same ethnic heritage my family had always claimed. I also didn’t test positive for any genetic markers linked to increased risk of an alarming disease.
I would have just forgotten about the whole thing, but since then I’ve heard all kinds of crazy things about why at-home DNA testing may not be the best idea… and unfortunately like many of us I jumped on the bandwagon before really knowing where it was going.
While some people have found long-lost relatives, others’ lives have been uprooted by discoveries like children discovering the father they grew up with is not their real father (or vice versa: fathers finding out a daughter or son they raised is not their biological child). There are also serious concerns about allowing people to access complicated genetic information on disease risk without the help of a medical professional. Not to mention privacy: I deleted my 23andMe account, but apparently that doesn’t mean my genetic information isn’t being used by major pharmaceutical companies.
It’s all pretty complicated and, to me, a bit spooky, so I wanted to share some of the reasons I deleted my account and the biggest concerns about at-home DNA testing that are surfacing now, in case you’re considering getting to know your genes anytime soon.
OF COURSE there are many who feel genetic testing is great, and safe, and it’s a totally personal decision. These days, 23andMe has LOTS of privacy talk on its website, and you can have control over everything from whether they store your saliva vile, to whether or not you wish to have share your information with other 23andMe members. But back in 2016 this wasn’t as fleshed out as it is now, and let’s be honest— no matter the company’s good intentions, it’s all just a hack away from being meaningless. Such is the age we live in.
So, after I started to feel weird about the whole thing, I deleted my account, but it turns out that’s a step that will do little more than give me a tiny sliver of peace-of-mind. Based on a lot of reporting by journalists like this one, it seems pretty clear that once you share your genetic information (AKA get tested), you can’t unshare it. As she explains, “When you delete your DNA information, you are mainly hiding your information from yourself.”
This is what 23andMe says about account deletion:
- If you chose to consent to 23andMe Research by agreeing to an applicable 23andMe Research consent document, any research involving your data that has already been performed or published prior to our receipt of your request will not be reversed, undone, or withdrawn.
- Any samples for which you gave consent to be stored (biobanked) will be discarded.
- 23andMe and our contracted genotyping laboratory will retain your Genetic Information, Date of Birth, and sex as required for compliance with legal obligations, pursuant to the California laboratory regulations and the US. Federal Clinical Laboratory Improvement Amendments of 1988 (CLIA), respectively.
- 23andMe will retain limited information related to your data deletion request, such as your email address and Account Deletion Request Identifier, as necessary to fulfill your request and for the establishment, exercise or defense of legal claims.
So yeah, while some things are deleted, it’s clear that other things aren’t. I can only hope that my genetic information has been disassociated with my name, and that it never comes back to haunt me. Still, I feel foolish for sending it out to who-knows-where, given recent news like the fact that 23andme recently sold its data to a massive pharmaceutical company. Peter Pitts, president of the Center for Medicine in the Public Interest, shares a sobering thought in this article: “This information is never 100% safe. The risk is magnified when one organization shares it with a second organization.”
Lots of commentators have noted that whenever data is passed to another party, that makes it more vulnerable to breaches. I mean, how many times has your credit card info been stolen? That kind of stuff happens all of the time, so it’s hard to imagine genetic data will never be hacked. And even if the data sharing was legal, you may have signed away your privacy in bigger ways than you realized.
For instance, according to Consumer Reports:
“The HIPAA privacy laws that protect patients in a medical setting don’t apply to companies that do direct-to-consumer genetic testing,” says Dena Mendelsohn, senior policy counsel for Consumer Reports. “That means that as long as their terms of service don’t specifically prohibit it, these companies can conduct research on your genetic data, sell it, or share it with third parties… there’s a real risk that somewhere along the way, this information could be used in ways that are harmful to the person who submitted their data for testing or even to their relatives.”
Disease Risk Concerns
While there are some laws in place preventing companies from denying health insurance based on disease risk, those laws don’t apply to things like life insurance. In other words, what if your disease risk information was shared with a company that could use it against you?
The other concerns with disease risk testing are not about privacy but about the tests themselves.
For example, a New York Times column outlined how 23andMe’s BRCA testing (for genetic mutations that significantly raise risk of breast and ovarian cancer) could miss a mutation. In a clinical setting, patients are given genetic counseling and then are tested for the specific mutation that is present in their family. Or if there is no known mutation, they can be given a test that looks at the entirety of the genes. 23andMe’s approach is not nearly as precise or comprehensive.
And there’s the fact that when you get this kind of information outside of a clinical setting, it’s not necessarily useful (and may be seriously upsetting). While recent research has found that discovering genetic mutations related to heightened disease risk isn’t associated with long-term anxiety or quality of life, finding you are at higher risk for breast cancer, Parkinson’s, or Alzheimer’s is a big deal.
I mean, genetic counseling was created specifically so that when an individual gets results like these, they’re already informed about what they mean and what they can do with the information (if anything) to address that risk.
You may also find out that you’re a carrier for a condition like cystic fibrosis, which you don’t have but could be passed on to a child. In that case, it would impact your childbearing decisions. All of this stuff, of course, should be taken straight to your doctor.
There are so many intriguing tests on the market that promise all kinds of cool information— about everything from ancestry and heavy metal toxicity to gluten sensitivity or your microbiome.
I think laboratory testing is fabulous, and should be cheaper for everyone. I have done a bunch of labs with my doctor and know a lot about my microbiome, food sensitivities, inflammation levels, and more.
23andMe says that they will protect your data, and disassociate it from your personal information. But they definitely seem to be in the business of selling genetic data to. third parties, and like all Terms & Conditions, there are ways that your most sensitive information might be used that you don’t really understand when you start spitting into that vile.
Government-regulated medical labs have to adhere to much more rigorous privacy standards than newfangled at-home dna testing companies do, and given the way that tech companies are playing fast and loose (or just plain careless) with our privacy lately, this is one area where I’m going to stick with old school methods.
What do you think? Have you taken an at-home genetic test and regretted it? Or did a test really help you in some way? Share in the comments below!