At-home DNA testing companies made major gains this holiday season, selling millions of kits to consumers curious about their ethnic origins, distant relatives, and genetic health risks.
DNA test kits were one of Amazon’s top five selling products on Black Friday in 2017. One of the largest companies offering DNA testing, AncestryDNA, said it sold more than 1.5 million tests the weekend after Thanksgiving, triple what it sold from Black Friday to Cyber Monday in 2016.
But despite this popularity, critics have raised serious concerns.
Two weeks ago, the Federal Trade Commission (FTC) issued a warning to consumers about the privacy implications of at-home DNA test kits. It is not always clear what companies do with DNA data and whether it can be sold to third parties. The FTC recommended that consumers comparison shop among sellers and not automatically accept a company’s security settings.
The process is deceptively simple for what turn out to be very complex results. Most tests cost around $100 and are available online. Clients send in a saliva sample and a few weeks later receive a comprehensive DNA report.
Some companies specialize in ethnicity and family trees. Clients learn about their ethnic heritage (23 percent Sicilian, for instance) and can opt in to a service that will match them to their closest relatives in the database—with more than 6 million samples, AncestryDNA’s database is the largest in the world.
Feel-good stories about DNA testing leading to reunited families are popping up all over the internet. Last week, CNN reported on two men in their 70s, lifelong best friends, who both took DNA tests and discovered they were half-brothers. The Chicago Tribune this week told the story of a 57-year-old woman who was abandoned as a baby with no information about her family, but after taking a DNA test, she was able to attend a family reunion and meet her half-brothers and a whole roomful of cousins.
Other companies emphasize personal wellness and health risks. 23andMe allows clients to learn about genetic health risks for serious diseases like Alzheimer’s and Parkinson’s, as well as carrier status for more than 20 diseases, including cystic fibrosis and muscular dystrophy. In April 2016, the U.S. Food and Drug Administration approved 23andMe’s at-home DNA testing for diseases and carriers.
But despite the simple process and streamlined reports, many people take the tests unaware that what they find out about their family or their health may change their lives forever.
A Chicago woman and the man she thought was her father both took DNA tests only to discover they were not related. A stem cell and reproductive biologist ordered a DNA test as part of a course he was teaching on the human genome. But revelations about an unknown half-brother led to family turmoil and ultimately his parents’ divorce.
Medical revelations—especially about incurable diseases with no effective treatments—can be just as shocking.
Finding out you have a predisposition for lactose intolerance can help you act to ease your stomach pain. But some people find out they have a predisposition for Alzheimer’s disease. People with two sets of the same E4 variant (inherited from both parents) have an 80 percent chance of getting Alzheimer’s by the time they are 80.
Because of the Genetic Information Nondiscrimination Act of 2008, health insurance companies are not allowed to penalize people for high-risk genetic markers, but life insurance companies are not subject to the act and could eventually use DNA test results to increase premiums for those with certain high-risk conditions.
“Everyone has a right to know about their risk if they want to, but these companies have a moral responsibility to make sure people understand the meaning and consequences of this information,” Louise Walker, a research officer with the Alzheimer’s Society, told The Guardian. “Anyone considering getting genetic test results should do so with their eyes open.”
British doctor and author Margaret McCartney agreed: “What worries me is the aggressive way these tests are marketed. People are told all the benefits but there is no mention of the downsides.”
One interesting fallout from inexpensive, fast DNA tests: In a world with an increasing number of donor-conceived children, anonymity is becoming a thing of the past. Donor-conceived children and their parents are starting to use DNA databases to find anonymous donors.
A website forum called the Donor Sibling Registry has helped more than 15,000 donor-conceived people find their half-siblings or donors, many with the help of at-home DNA testing.