At-home DNA kits: What you’re really signing up for
Discovering your past with the help of an at-home DNA kit is gaining in popularity, but sending off your DNA doesn’t just provide insight into your family history. It could have big consequences for your future.
DISCOVERING YOUR PAST
Naples resident Dodi Gill is deeply interested in her family’s lineage. As a child, she remembers listening to her parents’ ideas of how they came to be.
“There were stories where we were like, yeah right dad. OK sure,” Gill said.
So she’s trying to connect the dots, make sense of her parents’ past and the tall tales they shared.
“My mom had this whole story about a man from Europe, came to America and California, and met a princess of the tribe,” Gill said.
But she’s determined to find the truth.
“I just wanted to see how far back they could go,” Gill said.
She sat down with WINK News to take her second DNA test, purchased from Ancestry. Dodi took her first at-home DNA test a year ago, but she wasn’t satisfied with the results when her mother’s background didn’t show what she expected.
To take the test, users provide a little saliva. They also provide their name, address and eventually they can decide if they want their DNA to help in research projects, like developing new drugs or therapies.
That was something Dodi thought might be a good thing. “I mean what bad could they use it for, you know?” Gill said.
Professor Katherine Drabiak, a medical ethicist at the University of South Florida, knows. She researches what can happen to users’ DNA.
“People may not know what they’re getting themselves into,” she said.
Like Dodi, Drabiak said most people think giving their DNA to research is a good thing. But she has a warning.
“It’s not like going on Amazon and buying a new book or a new pair of shoes,” Drabiak said. “You’re putting your genetic information out there and giving it to these companies.”
WHAT DOES RESEARCH MEAN?
Depending on the kit, opting in for one of their projects could also mean they sell users’ DNA to pharmaceutical companies and other for-profit businesses.
“Giving our information, our genetic information, and our health information to companies like that also places that information at risk of getting into other hands,” Drabiak said. “It might get leaked or breached.”
In their privacy statements, companies explain that they remove any identifying information, like name, address, birthday, etc., before giving it to a third party. Drabiak said even after doing this, it’s still technically possible to figure out who the aggregated genetic information belongs to.
“To re-identify, it’s kind of like a puzzle using bits and pieces of information,” Drabiak said. “You can go online and find addresses and voter registration records.”
Luckily, there are protections. The federal Genetic Information Non-Discrimination Act – or GINA – makes it illegal for users’ genetic info to be used against them by their employer or for health insurance. But it’s not perfect.
“In every law, I like to say there are a number of loopholes, and this is one of the big ones,” Drabiak said.
If there were a breach, Drabiak explained GINA doesn’t protect against discrimination for life insurance, long-term disability, or even military service. And depending on what’s in users’ genes, that could cost them more in the long run.
PROTECTING YOUR PRIVACY
WINK News reached out to a few popular DNA companies, including Ancestry, 23andMe and Family Tree DNA. They told us they require any third party collaborators to have strict security measures in place to keep users’ DNA safe.
Additionally, they said if users change their mind about consenting to future research, the company gives the option for users to opt out. But if users’ DNA is involved in any ongoing or completed research, they’re out of luck.
“It’s incredibly difficult to say ‘I don’t want you using this anymore,’” Drabiak said. “You might stop [the company] from… being that hub of sharing it with more entities, but if it’s already out there, those other associates might be sharing it even further.”
A spokesperson from 23andMe told WINK News in an email:
“All of our research collaborators are required to meet the same rigorous security standards as we hold ourselves to, including robust technical and organizational controls… Third party organizations are not authorized to distribute any customer information.”
And a spokesperson from Ancestry provided this statement:
“If a customer has agreed to Ancestry’s Informed Consent to Research, and their data is part of an ongoing or completed research project, Ancestry will not be able to remove that customer’s Genetic Information from active or completed research projects. However, opting out of participating in scientific research will prevent any of the customer’s data from being part of future research.”
WINK News also dug into their privacy statements and found that some of these companies will automatically store users’ DNA sample for future use, unless otherwise instructed by the user, regardless of whether the user consented for research.
Furthermore, we found that many companies have clauses in their privacy statements saying they can change their terms at any time. This has already happened with one company WINK News contacted, Family Tree DNA. That company recently began working with the FBI to use the service to solve crimes.
After reading through the fine print and talking to her fiancé, Dodi decided the research route wasn’t in her future.
Read their informed consent agreements and privacy policies:
INFORMED CONSENT AGREEMENTS
DNA KITS: Would you volunteer your DNA information for research?
— WINK News (@winknews) February 4, 2019