Greater oversight needed in sharing of genetic information online

October 23, 2015

For now, there aren't any laws that govern the exchange of genetic information online. But as genetic analysis becomes cheaper and more widespread, more and more people will have access to their DNA code - and experts fear that consumers may share genetic data without realizing the potential implications for themselves and their families.

"There's stuff in there that we can't interpret today, but we will be able to interpret in five years," said Russ Altman, MD, PhD, professor of genetics at Stanford and a scientific advisor for 23andMe, who was not involved in Lee and Crawley's work. That means an unsuspecting consumer could share data that's meaningless today, Altman said, but later reveals an elevated risk for a serious disease.

"Personally, I'm not anxious to share my genome," Altman said. "The information affects my daughters, my son and my parents, who might not want to learn about their genetic profile. If I share my information with strangers, there's a higher risk that it will get back to my family."

In addition, both consumers and their health providers may have trouble interpreting data provided by personal genetics companies, Lee said. Estimates of disease risk are often based on small, unreplicated studies in the biomedical literature, but consumers may not understand how preliminary this data is.

"Results depend on the number and type of markers that are used, as well as how robust their databases are," Lee said. "It's important for there to be a greater oversight of this information to ensure that consumers understand what their results actually mean."