How risky are at-home DNA tests? Are they worth privacy risks?

You don’t need to be a biology geek to be seduced by a DNA testing kit you can use at home. Just finding out more about your genetic heritage, where do you come from is a powerful motivation to try one out. It can also shed light on many medical conditions that could haunt you and arm you with the knowledge you need to prevent the onset of an inherited chronic illness.

Practicality and accessibility are part of the seductive power of these tests. You can buy a kit for as little as 65 USD — which is remarkably cheap if you remember this kind of test used to cost thousands of dollars not too long ago.

All you need to do is to send a lab saliva sample. Then you sit back and wait for the results to arrive back at your home.

In this digital age, privacy is of utmost importance. Anything about you can go online quickly. So it’s natural many even keep wondering if the at-home DNA tests are worth it. This post answers that in detail.

DNA as merchandise. Your DNA, to be precise

So everything looks great on the surface. The test is cheap, and it’s cool; it could be informative. But what are you doing exactly? Consider that you are paying your hard-earned cash to a corporation so that it can acquire more information about yourself than you know or can interpret. And nobody promised you that they would keep any secrets either.

Access to anonymized DNA databases is, in fact, for sale. 23andme, one of the most popular DNA commercial testers, offers that service. But not to you. Users are pharmaceutical conglomerates and other big companies, which include GlaxoSmithKline. Among themselves, they spent about 300 million USD on that data.

Yes, of course, you can opt out of the program as a customer. But did you know you can before you sent your sample? Also, the “small print” in the privacy statements offered to prospective customers do not explain with clarity the extent to which the company can exploit your DNA information.

What will you really learn? We mean something that matters

Sure, you’ll learn something about your heritage. Maybe. Heritage data is accurate only for people of European descent because the most extensive genetic databases are made from such people.

If your Asian, African, Native American or other kinds of heritage are relevant in your genome, the process is far from perfect, and it could just give you irrelevant information.

The other supposedly good reason to have your genome decoded is your health. Your genes could be keeping secrets from you that you could use to improve your health. Or that’s what you think.

The reality in DNA testing is that accuracy in locating potential genetic diseases is still sketchy at best. You have a better chance to experience unwanted anxiety from the test’s results than to prevent the onset of a rare inherited disease that only your genome can reveal.

And that’s without considering false positives, which can lead to tragedies. And genes are not everything, even when it comes to genetic diseases. Lifestyle factors trigger a gene’s function.

Your diet, exercise routine, smoking habits, alcohol intake, sleeping habits, and environmental factors are far more critical in triggering inherited diseases than the genes themselves. And the test won’t tell you that.

So yes, DNA testing kits are cool. And there’s no good reason to use one.

But it’s for humanity’s progress!

DNA kit makers are not in business for your curiosity’s benefit. That’s a nice collateral effect, but they’re in it to collect genetic data to add to their databases. They profit from the data they collect. That’s why DNA tests are now so cheap.

While the aggregated DNA data can indeed help with cancer research, diabetes prevention, and many other medical endeavors, the fact is that the world’s pharmaceutical giants are not spending millions on 23andme’s data out of the kindness of their hearts.

And the genetic data is just one ingredient in the mix for drug companies. Once some progress is made, their focus will be patenting medications and making money from the new drug.

Big pharma is among the world’s biggest, most powerful, and most profitable corporations globally, let alone their substantial political influence. Do you want your genetic data to help them be even more prosperous? It’s your decision.

So yes, your DNA test will help humanity in making scientific progress, especially in the health sciences. But very indirectly. What will happen for sure is that drug companies will benefit from it.

Still, it helps to catch criminals

Lately, we’ve seen how GEDmatch, a genealogy database, is becoming increasingly valuable for law enforcement as it helps solve crimes. The poster case is the Golden State Killer case in which a man was arrested accused of being a serial killer active in California during the ’70s and ’80s.

The advantage of the GEDmatch technique is that you don’t need to find an exact DNA match in a crime scene to identify a suspect. Having a set of inexact but close matches is good enough to compile a list of relatives who can point to the correct person. Dozens of cold cases have found solutions with this technique.

So law and order do benefit from the available genetic information out there. But how ethical is it? If you are looking to know more about your ancestry, is it ok for you to become part of a criminal process? And this kind of database can’t be anonymous. Every participant is identified clearly.

GEDmatch changed its terms of service after the Golden State Killer case proved successful. So now you have to opt-in for your DNA profile to be included in law enforcement research. Also, the crime categories that can use the site have been curtailed to the most severe offenses only, such as murder and rape.

Could your own DNA turn against you?

The terms of service in at-home DNA tests have a problem. You could consent to the current ones. And then the company can change them in the future, once your data is already theirs.

Also, what if insurance companies start to examine your genome to evaluate your insurability? Every person in the world carries many bad genes, that doesn’t mean that they will manifest necessarily, but they could dramatically drive your insurance cost.

Or you could be denied life insurance because your genes “say” you will die young. That’s not the case so far with at-home tests, but it could happen soon. Also, your genetic information is not only yours. It will tell those who own the data a lot about any close relative, a lot more than you think.

Consider the hackers

Whenever a data set is digitalized and profitable, you have to consider that hackers are around, active, talented, and looking for new toys they can use to play. And safeguards have never stopped them in the past.

We’ve seen hacking scandals that involve many of the world’s more prominent corporations so far. Sooner or later, one of those scandals will hit a DNA database. Would you like it to be the one that includes your contribution?

Final thoughts

From a purely scientific point of view, an at-home DNA test will never give you information more meaningful and helpful than you can obtain through other means. This holds especially true in the case of medical conditions.

The main benefit of DNA testing is not for you but for the company that provides that service and makes millions selling its database to big corporations. They are the real winners, and that’s the reason why the tests keep getting more affordable: the idea is to lure in more people who will make their genes available for data collection.

And there are privacy concerns to consider too. It has consequences in criminal proceedings, and it’s just a matter of time before this type of data becomes a thing in calculating insurance costs, just to name the most apparent complications.

So should you buy that kit and have your DNA tested? It’s up to you. But you should make an informed decision that includes all the relevant factors.