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DNA testing has become a big business. Companies like 23andMe, Ancestry DNA, Family Tree DNA, and many others are now offering their services at large. All you need to do is send in a sample and they’ll tell you about potential health issues, information about your ancestry, and all sorts of other “facts”. (How accurate they are is, of course, up for debate.)
But is it a good idea to send your DNA off to a corporation? What do they do with it? Is this a potential privacy concern? Let’s take a look.
What These Services Offer
23andMe, one of the most popular services, offers two different types of tests. The first is an ancestry test for $99. After sending in your sample, you’ll receive a report with a breakdown of percentages, each one showing how much of a particular region’s genetic influence is present in your body.
You can also opt in to connect to other people who have a similar genetic makeup. It’s like a social network based on DNA. Are these figures accurate? 23andMe says they are. Inside Edition reports that identical twins can see some notable differences, so it could go either way.
The second service, for an extra $100, includes health factors. You get a number of risk reports:
- Late-onset Alzheimer’s Disease
- Parkinson’s Disease
- Alpha-1 Antitrypsin deficiency
- Hereditary Thrombophilia
You can also see how your genes might affect things like your sleep, “genetic weight,” carrier status for a number of diseases, and a host of cosmetic factors (though why you need a genetic report to tell you your hair color, I’m not sure).
The FDA has approved the risk reports, but there’s still controversy over the accuracy and usefulness of these tests. 23andMe hasn’t always had a great relationship with the FDA either.
Does This Violate Your Privacy?
This is the question we’re really here to consider. You can argue all day about whether or not these tests are accurate, if they’re causing undue anxiety, or if the companies are just cashing in on a money grab while they still can.
But you’re sending your DNA off to a corporation. Should that make you nervous?
Of course, my initial answer is absolutely. But I started looking into the privacy policies and revenue models of DNA testing companies, and I realized the answer is a bit more complicated.
Yes, DNA testing companies are selling your genetic information. That’s incontrovertible. They sell it to research organizations, but it’s in a deidentified format. Your name isn’t linked to any of the genetic information that gets sold. So that’s somewhat reassuring.
If you don’t opt into this program, though, your data will only be sold in anonymized form.
Does Anonymized Genetic Information Protect You?
Assuming that the deidentification of your data is effective, there really isn’t anything to worry about from a privacy perspective. The fact that your genetic information is being bought and sold, though, might not sit well with you. And you wouldn’t be the only one.
That’s not the only privacy issue at stake here, though. For example, life insurance companies can deny you coverage based on your genetic profile, because they’re under different laws than health insurance companies. Does 23andMe sell their information to life insurance companies? No.
Does that mean they won’t ever? You’ll just have to come up with your own opinion on that one.
And what about other interested parties? Employers are currently prevented from requesting genetic information, but some lawmakers in the U.S. are looking at removing that protection.
Governments around the world are creating massive DNA databases for law enforcement purposes, and that has many privacy advocates worried. Ancestry DNA has a page about law enforcement, and states that they’ll give up genetic information if served a valid search warrant. In the United States, we don’t have a stellar reputation for denying search warrant requests that violate citizens’ privacy.
And while social networks aren’t requesting genetic data — and likely won’t any time soon — the thought of what could happen is particularly chilling.
None of these potential privacy concerns are solved by the anonymization of your data before selling it to research firms. Of course, you could argue that none of these things have come to pass, and that they’re not likely to. But do you want to take the risk? Or is the risk worth it?
Should You Be Worried?
Now that we’ve covered some edge-case scenarios, you can see that this is a rather complicated issue. Would it be so bad if the government had your DNA? In all honesty, probably not. But that doesn’t stop many people from thinking about GATTACA and the potential dystopian futures we could see if things go sour.
In the end, the current state of genetic testing probably isn’t much of privacy concern. You might be uncomfortable with your genetic information being sold for research. The fact that someone else is profiting off of your genetic sample does seem a little strange. But as far as privacy goes, you’re probably fine.
Does that mean it will stay that way? Absolutely not. In today’s particularly volatile political climate, it seems naive to take anything for granted. Before you sign up for genetic testing, take a few minutes to think about what you’re really offering up. The side effects could someday be worse than a bit of anxiety over your likelihood of contracting a particular disease.
Do you think genetic testing poses a threat to privacy? Have you used a genetic testing service? Share your thoughts in the comments below!