Buffalo, N.Y. (WBEN) - Consumer genetics and research company, 23andMe, is dealing with financial troubles which are causing concerns for their 15 million users world wide. The main concern, what will happen to their personal DNA data if the company goes under?
Mark Bartholomew, professor at the UB School of Law, says not much can really be done.
"The sad answer is not much, because it's that thing we've talked about a lot before, terms of service. Anybody who uses 23andme has agreed to their terms of service. Those terms promise to keep certain information protected, not public, but it also says those terms of service are subject to change. They also say that they could go to a new party. The consequence of a bankruptcy, your information is really out there, and there is potential for a successor to 23andme to use it."
While it sound dire, there is a way to still save your data. Deleting your account will remove you from their database and remove the threat of your information being out in the public.
"There is a certain ability to self help. You can go to 23andme and request that your data be deleted, that request that your account be terminated. That's what I'd advise people to do before things get too far afield here."
Bartholomew says that to him, it seems like this is a good place for legal authorities to pass some protections, and different states have different requirements. People see HIPAA and think it protects health information, but that only applies in health care settings.
Insurance companies are where Bartholomew sees a danger.
"There's a lot of things now where we voluntarily opt in to have insurance companies have more personal information about us, but this would be something where without us realizing it, they could know a lot about who we are and what our genetic background looks like. So I think that's something that we should take a close look to. And again, that's another reason, if you're worried about that's another reason for you to delete your account."