A New Zealand woman who found her biological father with the help of a genetic testing company is alarmed at news of the company’s bankruptcy and is warning the security of highly personal data may be at risk.
23andMe announced it had filed for bankruptcy on Monday and is looking for a buyer.
Although it promised to protect customer data throughout the process, California’s attorney-general has advised users to consider deleting their information.
Rebecca Hamilton said the genetic testing company was an “absolute lifeline” for her when she was searching for her biological father.
“I tried every possible avenue. It was the only place that gave me the answer and so I was able to establish my full whakapapa thanks to the DNA matching.”
Originally from New Zealand but now working as a law professor in Washington DC, she said the bankruptcy filing was the “worst case scenario”.
“That data can be sold off to the highest bidder, and so it was really difficult for me last night to delete my data from 23andMe, as everybody is advised to do at this point.
“The word is devastating. I’ve lost something that was such a lifeline that literally allowed me to establish my identity after a lifetime of searching.”
Hamilton said there was a “very realistic risk” the highest bidder could be someone such as an insurance company who could use the data to decline coverage to those with genetically predisposed diseases.
Other speculation was that artificial intelligence companies could buy and use the data, she added.
“It’s not to say that every possible buyer is going to use this for nefarious purposes, but the point is that people just don’t have any control over where it goes.”
Genomics Aotearoa director Peter Dearden was also concerned about what a new owner might do with the data.
“Someone might say, ‘we’re not going to give you this mortgage because there’s some sequence in your DNA which suggests you might have a higher probability that you’ll get a disease in the future’.”
23andMe was an international company that did not have to respond to anything in New Zealand “if it feels it doesn’t want to”, Dearden said.
“I think there are lots of people who this will be quite concerning to, the idea that their DNA sequence, which really underpins their humanity and biology, is actually now in the hands of some company.”
