conclusions about genetic patterns in such a sleep study. Statistically significant data from controlled “genome-wide association studies” require large numbers of participants, he said.
Such studies are carried out by organizations such as the Kaiser Permanente Research Program on Genes, Environment and Health, where participants and their genetic information are protected by regulations governing experimentation on human subjects.
Marcy Darnovsky, Associate Executive Director of the Center for Genetics and Society, said customers of genetic testing services should carefully research the aims of outside parties seeking their DNA sequences, and the benefits they will get in return. An individual’s decision could affect family members as well, because they share the same genes. Federal law provides some protection against discrimination on the basis of genetic traits, she said, but the laws still have gaps.
23andMe will cancel access to its site for any app developer that violates its terms, such as lending out its developer key or passing along customers’ genetic information to other organizations. But Polcari said that customers should exercise their own judgment when they decide who can share their data, because 23andMe may have little power to force third parties to comply with its terms.
The business plan at the Mountain View company, which charges customers $299 for their genetic scans, has been evolving as consumer genome testing has proved to be a modest source of revenue for the small sector. 23andMe has been building the size of its customer database and focusing on its value for research.
In July, 23andMe announced its purchase of CureTogether, a company that invites people to share their symptoms and their experiences with various treatments. The combination of CureTogether’s customer information, paired with 23andMe’s genetic data, supports “patient-driven” research and connects communities of individuals based on an understanding of DNA, said 23andMe CEO and co-founder Anne Wojcicki, who is married to Google co-founder Sergey Brin.
PatientsLikeMe, which also creates online communities, names 23andMe as a partner, and also collaborates on studies with academic scientists and drug companies including Merck and Biogen Idec.
