June 11, 2009

Would You Tweet Your Genetic Profile?

With the growing popularity of social networking sites like Twitter and Facebook, many people don't bat an eye at sharing very personal information online. It's not surprising, then, that many people may be inclined to also post the results of a genetic test that assesses their risk for diseases, but bioethicists are concerned that sharing such information could violate the privacy rights of your family members.

More than 100 companies across the world now provide some form of direct-to-consumer genetic testing and some of these companies even allow their companies to create public profiles and share their genetic data through company-sponsored social networking sites. Bioethicists at Stanford University School of Medicine said this raises a host of ethical questions.

"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," Sandra Soo-Jim Lee, Ph.D., a senior research fellow at Stanford's Center for Biomedical Ethics, was quoted as saying.

Lee said if you learn and share information online about your breast cancer risk, you might also be sharing information about your daughter's risk for breast cancer, even though she never consented to have that information shared.

To understand the potential impacts of exchanging genetic information online, Lee and colleagues are studying who is giving out such information and how it's being used.

Bioethicists said they're also concerned about the risk of misinterpreting genetic information because there is still a lot that researchers do not understand about a person's genetic profile. For example, someone may share seemingly meaningless data today, but in five years, that could reveal an elevated risk for a serious disease, experts warned.

SOURCE: American Journal of Bioethics, June 5, 2009