An illustration of a gift bow.

If you’ve been searching for holiday gifts for friends and family, you might have considered the possibility of getting someone a direct-to-consumer (DTC) genetic testing kit—the kind where you spit into a tube, mail it off, and receive insights about your relatives, your ancestry, and even your health. 

After all, many companies offer discounts on these kits in the lead-up to Christmas.

But though it may seem like just another trendy present, giving someone the gift of testing their own genetic material is more fraught than giving someone a similarly of-the-moment gift of a smartwatch or tablet.

Sending off your DNA so that a private company can analyze and store it raises serious privacy concerns, says Dena B. Mendelsohn, J.D., M.P.H., CR’s senior policy counsel. And when it comes to both your family’s health and your own, a DTC genetic test could tell you (or an unwitting gift recipient) information you would have preferred not to know. 

Here’s what to consider before buying one of these kits for a loved one this holiday season.


Go to 
Consumer Reports’ 2019 Holiday Gift Guide for updates on deals, expert product reviews, insider shopping tips, and much more.
 

The Gift of Reduced Privacy

Little government regulation exists around what companies can do with the genetic information they collect when you take a DTC genetic test. Thanks to the Genetic Information Nondiscrimination Act (GINA), health insurers are prohibited from discriminating against people because of their genome. Providers of life, disability, and long-term-care insurance, however, aren’t bound by GINA. 

Beyond that, there’s little to restrict what DTC genetic testing companies can do with your data, Mendelsohn says. And what they’re doing with your data, in many cases, is selling it. In a study from 2018 that examined genetic testing companies’ privacy policies, 78 percent contained provisions that said they would share consumers’ genetic data with third parties—in de-identified form—without getting consumer consent.

Some companies, such as 23andMe, ask consumers to opt in to any sharing with certain third parties, such as pharmaceutical companies or research institutions. Many of the privacy statements consumers agree to when signing up for such services mention that your information will necessarily be shared with certain entities, like the lab that tests your sample.

We reached out to 23andMe and Ancestry for more information about their privacy policies. “Customers choose how their information will be used, shared, stored, and otherwise processed,” says Adriana Beach, 23andMe’s corporate counsel for privacy. 

Ancestry’s policy is similar. “Ancestry’s commitment to privacy includes not sharing customer DNA data with insurers, employers, or third-party marketers,” the company told CR in an emailed statement.

Still, there’s no federal requirement for companies to get consumers’ consent when they share or sell collected genetic information. And because this is genetic data, the release of your information also reveals information about your family. 

“Consumers that use DTC genetic testing give up their own right to privacy as well as that of their blood relatives,” Mendelsohn says. “This is more than most consumers bargain for when they give or receive a holiday gift.”

The Gift of an Unpleasant Surprise

You’ve probably seen news stories about people buying a DTC genetic testing kit and ending up with unpleasant or unwanted information about the true identity of a parent or the existence of a previously unknown relative.

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Early data collected as part of a study from the University of British Columbia that’s currently underway suggest that it’s relatively common for people to receive a surprise like this, says the study’s principal investigator, Anita DeLongis, Ph.D., a professor in the department of psychology at UBC. So far, multiple survey respondents have said they had been surprised to uncover a family secret after a DTC genetic test—a possibility they hadn’t considered beforehand.

And some products, if you opt for receiving health-related insights as well as family or ancestry info, can lead to other kinds of surprises as well. A health report could reveal an increased risk for a condition such as Alzheimer’s disease or cancer, for example. In some cases, there may be an action you can take to reduce that elevated risk. In other cases, there may be no known medical intervention that can help, as is the case with Alzheimer’s. What’s more, with some tests, a result showing an elevated risk of a particular disease or condition may not even be based on the best available evidence, Mendelsohn says.

When you buy someone a genetic testing kit as a gift, you might not realize that you could leave the recipient with some difficult information to consider.

In a 2017 study in the journal Public Health Genomics, researchers interviewed 1,648 people before and after they received the results of a DTC genetic test. They found that 38 percent didn’t consider the possibility that they might receive negative health information before taking the test. The potential harms of receiving a worrisome result include psychological distress, as well as potential discrimination from life, disability, and long-term-care insurers. 

When genetic testing is ordered in a medical setting, providers spend time counseling patients about all these potential risks, says J. Scott Roberts, Ph.D., a professor of health behavior and health education at the University of Michigan School of Public Health and an author on the Public Health Genomics study. “There’s a lot of focus on making sure people have thought through the decision [to get tested],” he says. “When you do it in a direct-to-consumer format, people aren’t going to be as tuned in to those issues.”

Sometimes, of course, a DTC genetic test kit can reveal important health information, such as whether you carry a genetic mutation that predisposes you to breast cancer. 

But a negative result may also provide false reassurance. For instance, 23andMe’s test for BRCA mutations—which can sharply increase the risk of developing breast cancer—targets only three possible mutations, mainly found among people of Ashkenazi Jewish descent. A person could receive a “negative” result on 23andMe’s breast cancer test yet still carry a different mutation that comes with a similar risk.

Before You Buy

In general, health experts we spoke with said they’d be wary of giving a DTC genetic test as a gift to someone who didn’t explicitly ask for it.

Roberts points out that in his study, only 2 percent of respondents said they regretted taking a DTC test. Still, he says, when a genetic test is recommended by a healthcare provider, you can choose which conditions or risk factors you want to be tested for. There may be some information you’d rather not know, especially if there’s nothing you can do about a certain result. And although anyone who receives this gift could decide not to use it, “people might feel compelled to go through with it because they got it as a gift,” Roberts says.

“Consumer Reports is pushing for improved privacy protections, so consumers can use new technology like DTC genetic testing without risking their privacy or that of their family,” Mendelsohn says. Until that time, however, consumers should be careful about sharing their own genetic data or encouraging others to do so.

If you’ve already taken a DTC genetic test, see our guide on how to delete your genetic data, if desired.