Family ties: 23andMe, a personal genomics startup, will soon enable clients who’ve ordered its $999 DNA-analysis service to compare genomes online. The image above is an example of the kind of graphics that accompany the online genome-sharing tool. The genomic analysis above is for a real family of European descent, dubbed the Mendels, and illustrates the genetic similarity between Greg Mendel, the father, and his parents, grandparents, and children, as well as reference genomes of people of Asian and African descent. Users can also compare their similarities in terms of genes linked to specific traits, such as fertility and body mass index. Readers who aren’t yet ready to shell out $999 for their own genome analysis can explore the genome-sharing tools by opening a demo account at 23andMe’s website.
“It’s an intriguing idea to have a space for public participation in developing science,” says Greg Feero, chief of genomic health care at the National Human Genome Research Center, in Bethesda, MD. “The more we can engage the public in thinking about genomics, the better off we’ll be in the long run in developing this new branch of medicine.”
However, Feero says, the power of the database will lie in the accuracy of both the genetic analysis and the medical and personal information provided by customers. “If 23andMe is going to do this well, they’ll need to be incredibly careful in how they label an individual as having a particular trait,” he says.
Feero says that it’s also unclear how companies like 23andMe will use the data that customers put into its bank. “Will it be used only for public research endeavors, or also private product development?” he asks. Avey has said that 23andMe will not sell genetic data to pharmaceutical companies, but it may sell access to the company’s pool of willing research participants or other fruits of its database.
While 23andMe is gauging interest in the enterprise from the research community, the company’s founders also envision spurring a sort of grassroots research effort that mirrors the rising influence of patient-advocacy groups, such as those that have organized new research projects about autism and Parkinson’s disease. If the trend attracts large enough numbers, people with particular diseases could come together to search their genomes for similarities. Or those who escaped a particular condition despite a high genetic risk could provide insight into lifestyle and other genetic factors that were protective.
“This might be better done by the research community than a social-networking community,” says Church. “But it might be well started in this playful environment.”
Avey gives the controversial example of the link between vaccines and autism. Large-scale studies have found no association between the two–a finding accepted by most of the research community–but a subset of parents remain convinced that their child’s disorder was triggered by vaccinations. This group could potentially search for genetic resemblance among their children, perhaps in genes involved in drug metabolism. “If we can give them a platform to sign up children and do their own study, we want to facilitate that,” says Avey.
Of course, success of a community-driven approach to genetic testing requires huge numbers of parents to sign up for 23andMe’s service. For the autism example, a member of 23andMe’s scientific advisory board estimates that 20,000 children with autism would need to be signed up for the company’s service to generate a large enough database for research. 23andMe declined to release current sales figures.
The idea of simultaneously paying for a service and participating in research is not unprecedented.”The National Genograpic Project gathered half a million participants in a fairly short period of time,” says Church, who is overseeing a similar, nonprofit effort to gather and analyze genetic and medical data. “If you start getting serious numbers of volunteers, it could be awesome.”