Risks of Sharing Personal Genetic Information

A news release from Stanford University’s School of Medicine highlights the ethical issues involved in revealing genetic information online. Sandra Soo-Jin Lee, PhD, senior research scholar at the school’s Center for Biomedical Ethics:

“Genetic information is unique in that it’s not only relevant for the individuals who receive the information, but also for their family members, their children and even their children’s children.”

“If you receive information on your breast cancer risk and share it with others, you might also be sharing information about your daughter’s risk for breast cancer — even though she never consented to have that information shared.”

“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.”