With just $399 and a bit of saliva in a cup, consumers can learn about their genetic risk for diseases from breast cancer to diabetes. Now, thanks to social networking sites set up by personal genomics companies, they can also share that information with family, friends and even strangers on the Internet.
Bonding over a similar genetic background sounds relatively harmless. But according to bioethicists from the Stanford University School of Medicine, sharing genetic information online 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,” said Sandra Soo-Jin Lee, PhD, senior research scholar at the school’s Center for Biomedical Ethics.
Because genetic information applies to more than one person, issues of privacy and consent become complicated….
…recommendations will be published in a special double-issue of the American Journal of Bioethics on June 5….
Here’s the link to the American Journal of Bioethics. (That issue of AJOB includes a paper called “Research 2.0: Social Networking and Direct-To-Consumer (DTC) Genomics” by Soo-Jin Lee and her co-author LaVera Crawley, along with a bunch of commentaries on it, one of which I co-authored myself. In our commentary, Nancy Walton and I point out among other things that Lee & Crawly propose to investigate the democratization/empowerment promised by personal genomics, without recognizing that democratization and consumer empowerment are in fact very different ideas. If we’re going to understand the impact of personal genomics, we need to start by not conflating key concepts.)