Home DNA Test: What Happens With Your Genetic Info?
Stockings all over the country were stuffed with home DNA testing kits that people will be sending in this month, adding to an already huge genetic database for companies like 23andMe.
What happens with that information?
In 2018, 23andMe made a $300 million deal with the pharmaceutical giant GlaxoSmithKline to share that genetic information, as it seeks to develop new medicines.
News like that, however, might make some customers uneasy.
Peter Pitts, president of the Center for Medicine in the Public Interest, said it's exciting that a pharmaceutical company can access this wealth of genetic information to advance public health, but he's not sure customers are clear that's what they're getting into when they take a DNA test to find out about their ancestry.
"Even though when they clicked 'I approve' on the 23andMe website to get their stocking stuffer/Christmas present, they didn't realize that it allowed the company to resell their information at their own discretion," Pitts said.
Not everyone is worried. Erin Cassity, an academic librarian at the University of the Incarnate Word in San Antonio, also has a keen interest in family history.
"I mostly did it for genealogy and discovered that — just as I thought — I'm incredibly dull. My genealogy is very dull," Cassity said.
After she reviewed her genetic background, she decided to go further, opting to share her DNA for research purposes; She then began answering research questions on the website by the hundreds.
"I was logged into it today and found I have answered 590 questions for the health thing, because every time they're there, I answer some of them," Cassity said.
Kate Black, 23andMe's global privacy officer, said customers contributing to the research projects aren't trapped if they change their mind.
"They can opt out at any time,” Black said, “and they'll still get the full suite of reports and have the opportunity to connect with others on the platform, but if they do participate on our research platform that will make our information available for studies of all kinds."
Pitts, however, doesn’t think any of the at-home DNA testing companies are transparent enough about the risks associated with sharing your genetic fingerprint in this way. For example, he pointed to the issue of re-identification, which is when a third party matches a customer's identity to their anonymized DNA profile stored in the genetic database.
"It’s hard but it can be done,” he said. “So, rather than saying ‘It can’t be done; don’t worry about it,' 23andMe should say, 'Listen, we do the best that we can to see you're not identified,' " Pitts said.
Black countered that 23andMe does inform customers about that risk in its consent form and on its public website.
“We try to be really forthcoming about that risk,” Black said.
She added, "While we do everything in our power to de-identify their information and protect it, there is always a risk that you may be re-identified or otherwise have your identity known, so we want people to be aware of that going into their decision to participate.”
So before you mail off your test, make sure you read the fine print about potential privacy risks and be aware your genetic information could be used for purposes other than personal ethnicity estimates and making genetic family connections.
That brings us back to the 23andMe GlaxoSmithKline deal.
Cassity was already in 23andMe’s DNA database when that deal was announced. At that point, she could have opted out of participating in research. She did not.
“I suppose I look at that as something that is intended to be for the betterment of humanity in that finding medications and treatments is, to me, a good thing,” Cassity said. "I did sit and think about it for a second, and I thought about 'Does this bother me? Am I so concerned about my privacy now or in the future that this bothers me?' And I decided I didn't."
In the most recent public figures it released last January, 23andMe claimed to have more than 5 million customers in its database. Its main competitor, Ancestry, has more than 10 million.
Bonnie Petrie can be reached at firstname.lastname@example.org or on Twitter @kbonniepetrie