Inside 1to1:Privacy

Comfortable In Your Genes?: 23andMe Offers DNA Analysis and a Privacy Promise

March 1, 2008

By Larry Dobrow

There are still some people who, whether owing to caution or paranoia, remain uncomfortable with the notion of sharing any information beyond the minimum necessary to go about their daily business. These people will not be among the first to sign up for a consult with 23andMe, the most prominent and well-backed of the handful of upstart companies seeking to help individuals better understand their genetic information.

For everybody else, however, 23andMe could well herald a new era in self-knowledge. Here's how it works: After ordering the 23andMe service online, customers receive a saliva kit, which includes a barcoded tube and mailing materials. They then send their saliva sample to the company's contracted lab. There, DNA is extracted and analyzed - more than 500,000 points on the genome are noted - and a genetic profile is produced. The service costs $999. Early investors have included Google and Genentech.

Given how customers are asked to share information that their doctors only occasionally have access to, 23andMe has prompted its share of concerns about privacy. Some worry about the possibility of "genetic discrimination" by employers or insurance companies if such information is made public. Factor in that the information is viewed online and that the company hopes to use its trove of data to drive research, and the pundits have expressed grave concern about the privacy implications.

23andMe anticipated these concerns, however. "We put enormous effort into establishing both the technical and procedural structure around the privacy of our customers' data and feel we're very transparent about what someone should consider when deciding to access their genetic information," says 23andMe co-founder Linda Avey in response to e-mailed questions.

Indeed, the company Web site offers both a meticulously detailed privacy policy and a bulleted summation thereof, both notable for their absence of lawyer-speak. Signing up for the service obviously requires the collection and storage of personal genetic information. Beyond that, 23andMe only maintains data that individuals choose to share via surveys and questionnaires, like phenotypic information (disease conditions and personal traits). Customers can also decide to communicate with one another, whether about health concerns associated with a specific genetic profile or anything else.

While the privacy summation notes that the company "may use genetic and phenotypic information to conduct 23andMe-authorized scientific research and development," Avey pledges that the phenotypic data won't be shared with third parties without consent and that any shared data will not be personally identifiable. "We firmly believe that our customers should choose how their data are shared, if at all," she notes. Regular privacy audits will be part of 23andMe's practices and, Avey stresses, any changes will be openly communicated to those affected by them.

Given the company's ambitions, continued transparency on the privacy and security fronts would seem essential. The sooner the database grows, the sooner 23andMe can start intensifying relationships with academic and advocacy organizations. According to a report in Wired magazine, the company has already forged a partnership with the Parkinson's Institute and is hoping to enter into a similar one with an autism group.

Alan Chapell, president of privacy and security consultancy Chapell & Associates, commends 23andMe for its promise to provide "prominent notice of significant changes to their privacy practices - something that Facebook would have been well advised to implement a while back." At the same time, he identifies two possible areas of concern: ad serving and social networking.

"It would be unfortunate if Oxford Health were able to 'know' that a particular person had a genetic issue and decide not to serve an ad to them based upon that info," Chapell explains while noting "I think genetic info is in a completely different category. I'm not sure that I want to know my genetic information. But even if I did, I wouldn't want to share it with anyone. I just hope that 23andMe's users really understand the bargain they are entering into."

Avey seems committed to making sure that they do, saying, "Because we're at the beginning of a trend - that more and more people will decide it's in their best interest to have access to their genetic information -- we're very focused on establishing a service that is secure and trustworthy."

1to1: Privacy readers: Would you consider this type of service for a DNA analysis? Are you comfortable with this kind of information stored online? Write and tell us what you think.