Is learning about your genetic history worth giving up some control of your DNA information?
And what does that even mean? Could that decision come back to bite you later when you apply for things like health and life insurance? And could your DNA sample end up in the middle of a criminal investigation?
Millions of Americans have DNA samples stored in labs across the country after buying home-testing kits from companies like Ancestry.com, 23&Me and many more. Often, consumers say they didn’t give much thought to what happens to their DNA information after they get their test results.
And that’s one of the reasons why consumer privacy advocates and lawmakers are sounding an alarm.
In order to participate in testing, consumers must sign consent forms. The forms can be confusing (we reviewed one for Ancestry.com that is 2,905 words and 98 paragraphs.)
The forms differ from company to company but many companies sell your data – typically aggregated without your name – to biomedical companies and pharmaceutical companies.
“That information can be used by others to make decisions about employment or insurance,” said Marc Rotenberg of the Electronic Privacy Information Center.
Rotenberg says stronger laws are needed to protect consumers. Current federal law prohibits health insurance companies from using genetic information to discriminate but those laws do not apply to life insurance or long-term care facilities.
Drew Smith, a USF genealogy expert, believes those risks are low, asking, “Who would really want my DNA,” however, he adds, “Any time you share personal data, you expose yourself.”
“There’s not a guarantee that it can’t be hacked, it can’t be obtained, but those are concerns .. we make when we do banking online, there’s always a risk,” Smith said.
What about using DNA databases to help solve crimes?
The recent arrest of Joseph James DeAngelo, an accused serial killer, highlights what could be the future of criminal investigations.
The murder cases are decades old and were considered cold cases, but police say they used an online DNA database to find a match of a distant relative. From there, they narrowed the suspect pool and eventually found DNA from the DeAngelo and matched it to the crime scene, police say.
Both Ancestry and 23&Me made public statements that they were not involved in the case. In fact, police reviewed the information on a third-party site.
Consumers download their results, store it on their computer where data could be stolen or even upload data on third-party websites themselves. Your data could be more at risk once it leaves the testing company’s control.
Another thing to consider, Smith said, family secrets:
“Beware that if you, yourself, a grandparent, uncle, cousin, gave up a child who gave up a child for adoption, or possibly a male who fathered a child they weren’t even aware of, that could come to light,” Smith said.
“Even though you’re testing your own DNA, you are to some degree testing the DNA of family members because you and those family members share DNA,” Smith said.