In promoting her new genetic testing company, 23andMe, Linda Avey finds that people are highly inquisitive about how the process works. How long after mailing my saliva collection tube will my genetic data be posted on the Web site? What will I learn about my genetic predispositions to hundreds of inherited diseases or physical traits? What, exactly, is my ancestral path?
The aspect of this fascinating new company that is sometimes overlooked is that it is building a thoroughly ingenious platform that makes scientific research transparent and accessible on the Internet for the first time.
Avey and her business partner, Anne Wojcicki, are hoping to take genetic research out of the pristine laboratory filled with white-coated scientists and place it in the hands of those who need such information the most: us.
“We want to democratize research, to make people a part of the process, to give them a voice, as well as giving them access to their data.” Avey says.
23andMe does this as its core business, through its Personal Genome Service™. In a new twist, it also offers individuals a chance to decide where genetic research should be headed. The company’s Web site not only helps people to interpret their genetic data, explaining in laymen’s terms the most up-to-date genetic research, it also offers clients the opportunity to compare their genomes with others on the site and to participate in online surveys that collect information about their health and traits. By combining all these datapoints into its research platform, 23andMe has the ability to conduct its own genome-wide association studies.
“It’s Research 2.0,” Avey says. “We’re collecting data over time from people who are willing to post their information online, so the value of the service will increase as more and more people participate.”
This Research 2.0 platform also keeps patients who participate in medical research close to their own information. Many times, participants are cut off from research results when a medical study ends. They never learn how their data looked in context with other participants, or how it might look years later in light of new medical findings.
23andMe is specifically designed to maintain that connection between the research participant and the research community.
“Traditional research models don’t allow for that,” Avey explains. “The pendulum has swung too far toward a controlling environment in terms of getting consent or establishing contact. We believe there are ways to more closely engage with people who participate in on-going research programs, while still maintaining a very ethical approach.”
Voices in the scientific establishment have suggested that 23andMe is “trivializing genetics” because it makes it approachable and, arguably, entertaining. But Avey strongly disagrees with this assessment.
“We don’t think taking genetics to the masses trivializes it in any way. The more people understand genetics, the more it will be incorporated into every day life.”
Instead, the immediate benefit of the 23andMe Research 2.0 model is that it is creating a community of people with a common interest in genetics. Clients are finding their own personal genetic information “hugely fascinating,” according to Avey, and they are building connections to other people.
23andMe clients demonstrate faith in the open source sharing of information. Some who take part in surveys and studies will even get “micro-attribution” when those research projects are completed.“As we build our communities internally, we’ll be able to build our own research,” Avey explains, “and clients will be able to say, I was a part of that publication—I was a participant.”
Of course the ultimate goal of the company, Avey says, and the only logical reason to pursue a new research model so carefully, is to transform health care with a focus on prevention and personalization through more thorough knowledge.
“We talk about a disease such as Parkinson’s, but there may be ten different diseases at the molecular level,” she says. “Yet doctors typically still use traditional means to diagnose it. We hope to contribute to the knowledge that will lead to better diagnostic tools. It’s all about access to information that we’ve never had before.”