Genetics social networks raise ethics questions

Personal genetics company 23andMe recently made a deal with Palomar Pomerado Health, a California public health district, offering the $399 Personal Genome Service for sale at outpatient health centers. "PPH encourages its communities to understand their genetic information in order to make more informed decisions about their health," according to an announcement.

23andMe is one of nearly 100 companies worldwide that offer such services, and one of few that also let customers create a public profile and share their genetic data through a company-sponsored social networking site.

Such data, however, necessarily applies to multiple people. And bioethicists advise that sharing genetic information online raises a host of ethical questions, including issues of privacy and consent, say researchers at the Stanford University School of Medicine'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," says Sandra Soo-Jin Lee, senior research scholar.

Lee and assistant professor of pediatrics and bioethicist LaVera Crawley have been studying the potential implications of exchanging genetic information online. They plan to use an approach called "social network analysis" also used in anthropology.

"Social network analysis is a system of mapping how individuals are related to each other and how they form connections around certain institutions or ideas," says Lee, in the announcement. The work is funded by the National Human Genome Research Institute.

- read the 23andMe announcement
- here's the release from Stanford University

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