DNA Testing At Home: Risks and Benefits
Over the past couple of years, the popularity of at-home DNA testing kits has soared. In fact, the number of people who had their DNA analyzed this way more than doubled in 2017, exceeding 12 million. Most of the people tested were here in the US, which accounts for about 1 in 25 Americans.
At least six direct-to-consumer DNA testing companies exist, and they all operate pretty similarly. Depending on the kit and company, prices range from $60 to $200. You simply fill out some information online, provide a saliva sample (either by spitting into a tube or swabbing your cheek), and send it to the company in a prepaid envelope for analysis. About a month later, you get an email notifying you that your results are available online.
Not only do these tests promise to reveal your ancestral roots, they can give you interesting health traits like how quickly you metabolize caffeine, whether you’re lactose intolerant, and how your body reacts to alcohol. The more expensive kits also offer genetic health risk and carrier status reports for several conditions including age-related macular degeneration, celiac disease, Parkinson’s and Alzheimer’s diseases, and breast cancer.
As these DNA testing kits become more and more prevalent, it’s important to understand the benefits, limitations, and drawbacks before deciding to go through with it. Let’s break it down…
It should go without saying that the greatest benefit to geneaology testing is learning more about your ancestry. This can be particularly thrilling for those who are adopted or don’t know much about their family trees.
Based on genetic matching, a lot of these companies can connect you with relatives who have also done their test and gave permission to have their information shared. Discovering distant relatives or family members you never knew existed can be pretty exciting.
In addition, learning about your risk of developing or passing on certain diseases can be quite eye opening. If you discover that you’re at higher risk of a certain disease, it can steer you and your doctor to look into additional testing and, if appropriate, create a prevention plan complete with lifestyle changes and proper screening.
On the other hand, this private health information can present a few challenges and drawbacks.
For one, if you are someone who gets anxious or obsesses about your health, then you may want to forgo this part of the analysis. Even if you’re not and you take this risk evaluation in stride, it’s important to realize that no government entity—not even the Food and Drug Administration—regulates these home assessments. As such, the results can be great “conversation starters” with your doctor, but they can’t and shouldn’t go further than that.
After all, many factors come into play when figuring out true risk of disease. More research than ever is finding that lifestyle is a much stronger risk factor than genetics when it comes to disease. Genetic markers are one small piece of a much, much larger and more complex puzzle. This is not taken into account when you get your risk analysis.
Furthermore, none of these companies offer consultations with genetic counselors—experts when it comes to analyzing risk and helping you understand what your results mean and what next steps (if any) you should take.
Simply put, if you’re really worried about your risk of disease, working with a qualified health care team is your best way to address all areas of concern—genetics, lifestyle, and everything in between.
Another huge concern relates to privacy. What happens to all your data after the company sends you the information you’ve paid for? Well, it turns out they keep it—and this can raise some serious privacy issues.
Data kept in these companies’ databases can—and have—been accessed by law enforcement. This means anyone’s personal information is up for grabs, under the right circumstances (usually, but not always, a court order is necessary).
This happened not too long ago in a high profile, decades-long criminal investigation. Investigators apparently set up an account on a geneaology site under a fake name and loaded DNA sequences from the suspected murderer. They then searched for people who may be related to the perpetrator. The got a list of families, which they then cross-referenced with other information they had (locations, time frames, etc.). And bam—they solved the crime.
Now, this may not bother you if you have nothing to hide. But how sure are you that none of your cousins, grandchildren, or siblings could have been involved in something criminal?
And there are other ways that genetic information can be misused. Some of these companies have admitted to reselling data—and while resold data doesn’t identify actual people, there are ways to figure this out.
And while it’s illegal for insurance companies and employers to discriminate based on genetics, the sheer fact that all this data is out there—and being resold—could very well increase the risk of some unscrupulous companies acting unethically and illegally. Preventing this sensitive information from getting into the hands of the wrong people should be of critical importance. Is it? This field s so new that it’s really anyone’s guess.
What should you do?
So, given all this, is at-home genetic testing for you? Only you can decide.
Before you proceed, make sure you research the data privacy policies of the companie you are thinking about working with. This doesn’t necessary mean you’ll be 100% protected, but it’s at least a good start.
Also, seriously consider what question it is that you want to have answered? If you have a medical question, getting tested through your doctor’s referral and with your insurance company paying will have the same privacy protections as your other medical records, and it should connect you with an experienced genetic counselor who can help explain what your results mean and what your options are.
If, on the other hand, you’re trying to find lost members of your family, at-home genetic testing may be one of the best available tools for you.