Northwestern University's genetic justice expert, Sara Huston, has expressed a differing opinion regarding data security concerns following 23andMe's bankruptcy filing. Unlike California Attorney General Rob Bonta, who has advised users to delete their data, Huston does not share the same apprehension.
"I don’t think the highest bidder is going to be a foreign government or law enforcement," said Huston. "I think it’s going to be big pharma, so I say, so what if they get these data?" Huston's work at Northwestern University Feinberg School of Medicine focuses on policy options for genetic testing in medicine and law enforcement and the impact of genetic technologies on individuals.
For over a decade, 23andMe has collaborated with pharmaceutical companies by sharing de-identified aggregate data. This collaboration has resulted in significant discoveries and numerous scientific papers. "The value in these data is not in the individual peoples’ results — the power is when you can look at genomic differences among people in aggregate," Huston explained. "There’s an enormous amount of human biology we can discover by connecting traits and genotypic data."
Huston is available for interviews via phone or Zoom to discuss data concerns related to 23andMe's bankruptcy. Kristin Samuelson can be contacted to arrange an interview.
As the principal investigator of the Genetics and Justice Laboratory at Ann & Robert H. Lurie Children’s Hospital of Chicago, Huston investigates policies surrounding genomic information for identification purposes. She also co-leads Northwestern’s Global Fam DNA Working Group, which supports reunification efforts for rescued Ukrainian children using DNA databases.
Addressing potential risks associated with 23andMe's data falling into the wrong hands, Huston stated: "There’s a small risk that maybe a long-term care insurance company would want to profit off these data, but I don’t see them being the highest bidder." She added that social media contains more intrusive information than genomic data and suggested that deleting one's genetic data remains a personal choice.
Huston's research continues to explore policies and ethics surrounding genomic information use for identification in contexts such as missing persons and family reunification efforts.