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.


If you want to comment on this post, you need to login.


Board of Directors

See the esteemed group of leaders shaping the future of the IAPP.

Contact Us

Need someone to talk to? We’re here for you.

IAPP Staff

Looking for someone specific? Visit the staff directory.

Learn more about the IAPP»

Daily Dashboard

The day’s top stories from around the world

Privacy Perspectives

Where the real conversations in privacy happen

The Privacy Advisor

Original reporting and feature articles on the latest privacy developments

Privacy Tracker

Alerts and legal analysis of legislative trends

Privacy Tech

Exploring the technology of privacy

Canada Dashboard Digest

A roundup of the top Canadian privacy news

Europe Data Protection Digest

A roundup of the top European data protection news

Asia-Pacific Dashboard Digest

A roundup of the top privacy news from the Asia-Pacific region

Latin America Dashboard Digest

A roundup of the top privacy news from Latin America

IAPP Westin Research Center

Original works. Groundbreaking research. Emerging scholars.

Get more News »

IAPP Communities

Meet locally with privacy pros, dive deep into specialized topics or connect over common interests. Find your Community in KnowledgeNet Chapters, Sections and Affinity Groups.

IAPP Job Board

Looking for a new challenge, or need to hire your next privacy pro? The IAPP Job Board is the answer.

Join the Privacy List

Have ideas? Need advice? Subscribe to the Privacy List. It’s crowdsourcing, with an exceptional crowd.

Find a KnowledgeNet Chapter Near You

Talk privacy and network with local members at IAPP KnowledgeNet Chapter meetings, taking place worldwide.

Find more ways to Connect »

Find a Privacy Training Class

Two-day privacy training classes are held around the world. See the complete schedule now.

The Privacy Core™ Library Has Evolved

Privacy Core™ e-learning essentials just expanded to include seven new units for marketers. Keep your data safe and your staff in the know!

Online Privacy Training

Build your knowledge. The privacy know-how you need is just a click away.

Upcoming Web Conferences

See our list of upcoming web conferences. Just log on, listen in and learn!

Train Your Team

Get your team up to speed on privacy by bringing IAPP training to your organization.

Let’s Get You DPO Ready

There’s no better time to train than right now! We have all the resources you need to meet the challenges of the GDPR.

Learn more »

CIPP Certification

The global standard for the go-to person for privacy laws, regulations and frameworks

CIPM Certification

The first and only privacy certification for professionals who manage day-to-day operations

CIPT Certification

The industry benchmark for IT professionals worldwide to validate their knowledge of privacy requirements

FIP Designation

Recognizing the advanced knowledge and issue-spotting skills a privacy pro must attain in today’s complex world of data privacy.

Certify Your Staff

Find out how you can bring the world’s only globally recognized privacy certification to a group in your organization.


The IAPP’S CIPP/E and CIPM are the ANSI/ISO-accredited, industry-recognized combination for DPO readiness. Learn more today.

Learn more about IAPP certification »

Are You Ready for the GDPR?

Check out the IAPP's EU Data Protection Reform page for all the tools and resources you need.

IAPP-OneTrust PIA Platform

New U.S. Government Agency privacy impact assessments - free to IAPP members!

IAPP Communities

Meet locally with privacy pros, dive deep into specialized topics or connect over common interests. Find your Community in KnowledgeNet Chapters, Sections and Affinity Groups.

Privacy Vendor List

Find a privacy vendor to meet your needs with our filterable list of global service providers.

More Resources »

Europe Data Protection Intensive 2017

The Intensive is sold out! But cancellations do happen—so hurry and get on the wait list in case more seats become available.

Global Privacy Summit 2017

The world’s premier privacy conference returns with the sharpest minds, unparalleled programs and preeminent networking opportunities.

Canada Privacy Symposium 2017

The Symposium returns to Toronto this spring and registration has opened! Take advantage of Early Bird rates and join your fellow privacy pros for another stellar program.

The Privacy Bar Section Forum 2017

The Privacy Bar Section Forum is sold out! But you can still add your name to the wait list, and we'll keep in touch about your status. Good luck!

Asia Privacy Forum 2017

Call for Speakers open! Join the Forum in Singapore for exclusive networking and intensive education on data protection trends and challenges in the Asia Pacific region.

Privacy. Security. Risk. 2017

We're bringing the best of the best in privacy and infosecurity to sunny San Diego. Early registration for P.S.R. opens May 1.

Europe Data Protection Congress 2017

Call for Speakers open! The Congress is your source for European policy debate, multi-level strategic thinking and thought-provoking discussion. Submit a proposal by March 19.

Sponsor an Event

Increase visibility for your organization—check out sponsorship opportunities today.

More Conferences »

Become a Member

Start taking advantage of the many IAPP member benefits today

Corporate Members

See our list of high-profile corporate members—and find out why you should become one, too

Renew Your Membership

Don’t miss out for a minute—continue accessing your benefits

Join the IAPP»