Are at-home DNA tests worth the privacy risks?

The article was originally published on October 10, 2019.

I admit I’ve always been intrigued by DNA testing kits. My family lineage is complex, spanning a range of cultures and geographic regions, so I’ve been eager to get to the bottom of it. Plus, it would be cool to understand what sort of medical conditions I might be susceptible to and the precautions I might need to take.

And I’m not alone. One in 25 Americans now have access to their personal genetic data, with the four leading genetic databases now holding details about an estimated 26 million people.

Part of the charm is how easy the process is. Testing kits are reasonably priced, starting at about 65 USD. And all you’re required to do is send in a sample of your saliva and wait for the results to be mailed back to you. 

Your DNA as a product

DNA testing kits seem to be all fun and games until you realize that you’re willingly paying hard cash for corporations to hold some of your most personal details. And they’re not exactly keeping that information secret either. 

23andme, one of the more popular DNA testing services, began to sell access to anonymized DNA data to more than 13 companies in 2016, including pharmaceuticals maker GlaxoSmithKline, which paid nearly 300 million USD for it.

Sure, most customers accept the terms of this program and can opt out. But health care lawyers point to confusing privacy statements, saying that customers are often unaware of what they’re handing over or the extent to which DNA companies exploit this information. 

Can DNA kits tell you important things?

The results about your heritage could be interesting, but they’re not perfect, especially if you aren’t of European ancestry. This is because many more people of European descent have taken the tests, providing the databases with the most information to draw from.

For some, their DNA test results are a means to investigate what their health risks are and use that as a basis for a fresh consultation with their doctor. 

But doctors say test kits can cause unnecessary anxiety, especially since there’s still a lot of room for improvement when it comes to home tests’ accuracy in identifying susceptibility to diseases and probable traits. In fact, false positives for genetic conditions have led to near catastrophes, like a user who scheduled preventative breast surgery when a test erroneously indicated a mutation strongly linked to breast cancer.  

Another reason you can’t place too much weight on information from consumer DNA kits is while they may reflect your likelihood of contracting a disease, they don’t factor in lifestyle influences such as your diet, whether you smoke, the environment you live in, and how active you are. 

Other than the novelty factor, it’s hard to come up with a compelling reason to opt for DNA testing kits. 

But it’s for research!

DNA kit makers have never hidden the fact that their businesses are as much about aggregating a huge amount of genetic data as serving individuals curious about their ancestry. The value of the data they collect is how they are able to keep the cost of a DNA test within reach of the average person.

DNA testing companies may claim that their databases contribute to things like cancer research or diabetes prevention but, even if that’s true, drug corporations aren’t paying 23andme big bucks as a philanthropic endeavor. Whichever drug company makes a breakthrough will be more focused on patenting medications and making billions from the discovery. 

And as recent cases of drug price hikes show, the health care industry isn’t a noble savior out to make a better world for us all. It’s up to you whether you are O.K. with these companies profiting off your data.

But it helps solve crimes!

Then there is the rise of using GEDmatch, a genealogy database, to solve crimes, the most high-profile instance being last year’s capture of a man believed to be the Golden State Killer, a serial killer active in California in the 1970s and ’80s. Investigators don’t have to find an exact match to DNA found at crime scenes but rather close matches that can help compile a list of distant relatives—a technique that has proved valuable in this cold case and dozens more that have been since been similarly cracked.

While this may be a win for law enforcement and justice, it has raised ethical concerns. Should someone just trying to find out about their family tree be part of a criminal inquiry? This use of DNA databases also requires that individuals be identifiable, not part of an anonymized aggregate.

After police solved the Golden State Killer case, GEDmatch changed its terms of service so that users must opt in for their DNA profiles to be included in law enforcement searches, and crime investigations using the site are now restricted to serious categories like murder and rape.

Can your DNA be used against you?

GEDmatch’s change to its terms of service points to another concern about at-home DNA tests: Even if you consent to a company’s terms and conditions today, they can always be changed tomorrow, for better or worse.

Another concern is the possibility that someday your DNA will be used by insurance companies to assess your insurability. In the U.S., there are laws to prevent discrimination based on genetics for obtaining health insurance and employment, but individuals can be denied life insurance based on clinical genetic tests. Whether this law will one day evolve to include at-home genetic tests is to be seen.

And keep in mind, your test doesn’t just reveal your genetic code but offers glimpses into close family members’ as well.

Then there are hackers

Finally, anything in a database has the potential to be hacked, no matter the safeguards.

I used to think DNA kits were harmless, to the point of treating them as a fun experiment. But corporations can’t be trusted with our data. And I’m not willing to fatten executive paychecks by willingly transferring my information over to them. 

I’m not saying that you should do the same. But understand the privacy risks before you take the plunge.