DAYTON, Ohio (WDTN) – Genetic testing kits are gaining popularity. You can find out a wealth of information with just your saliva.
But a lot of people, including Jeremy Blanford, worry about how safe that personal information really is.
Blanford lost his father just days after Christmas. Before he died, Bill Blanford gave his wife– Jeremy’s Mom– a final Christmas present: A DNA testing kit from 23 and Me.
“Dad seemed to get presents that most people wouldn’t really think about,” Blanford said.
After his death, Jeremy’s mom started really reading the fine print that went along with the kit. She wasn’t happy with what she read, and neither was Jeremy.
“She would start ticking off, ‘This is what they potentially have the rights to do,'” Blanford said.
Dr. Marc Clauson is a professor of history and law at Cedarville University. He says their concerns are legitimate. Clauson says there are two areas of privacy people need to consider.
“In the private sector, with regard to what they do with your data and whether it can be hacked,” Clauson said.
Clauson said there is a statute that forbids the sale of that information to insurance companies, but it’s legal to sell to most other types of businesses and organizations. Another concern he says is just how much information there is to read in those privacy agreements. You agree to it when you create your account on 23 and Me’s website. To read through it, you click a link on the registration page… and then sift through pages of disclosures.
“Are you really signing that with knowledge?” Clauson asked. “Or are you just sort of– like most of us do– you get these little fine print contracts with pages and pages of information and we don’t even read it. Is that a violation of our privacy even though we should have looked at it?”
When you click the box, you’re saying that you’ve read the whole thing and are okay with it. There’s also a separate document that will allow you to “opt-in” for your genetic data being used for research purposes.
“If you opt into research (important point, this is opt-in not opt-out, so we’re not defaulting you into participation), which requires a separate consent and is completely voluntary, your de-identified genetic information, stripped of any personally identifiable data, may be used for research purposes….”
And no matter what, Kill says:
“We do not share any information with employers, insurance companies or public genetic databases.”
Another question: Can courts, or law enforcement use your information?
“It’s not a matter of what you’ve done wrong or what I’ve done wrong,” Blanford said. “It’s why should I be the vehicle for you to find this information?”
Kill said in part:
“We use all legal measures to challenge any and all requests in order to protect our customer’s privacy. To date, we have successfully challenged these requests and have not released any information to law enforcement.”
For Blanford and his family, that wasn’t enough. They threw the kit away.
Some federal lawmakers are pushing to examine the privacy standards for genetic testing companies, calling for stricter regulation.
“We’ve gotta have better protections,” said Senator Sherrod Brown. “They’ve gotta let us know what in fact what information, in fact, they’ve put out there. And none of these companies have been willing or able to do that and it’s time Congress stepped in.”
Blanford says he just wants people to pay attention.
“The only one who is going to take the necessary precautions that you feel are necessary is you,” Blanford said.
You can read the privacy agreements for the three top DNA testing companies by clicking the links below: