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23andMe Cutting Off Genetic Data Access to Non-Subscribers

The story has been updated to clarify that customers ending their subscription to Personal Genome Service will continue to have access to their raw genetic data.

By Tony Fong

NEW YORK (GenomeWeb News) – About one year after switching to a subscription-based model, consumer genetics testing firm 23andMe will limit access of subscribers who choose to end their subscriptions to their genetic data, a policy about-face that has left many subscribers up in arms.

A spokesperson for the Mountain View, Calif.-based firm told GenomeWeb Daily News that the changes were made, in part, over confidentiality concerns and that 23andMe is still working out the steps it will take amid the changes. While the company will reach out to its members to try to address some of their concerns and explain their policy, for now there are no plans to back off the changes.

The spokesperson could not provide a figure on how many subscribers the company has but said that 23andMe currently has 125,000 total customers, including non-subscribers.

In November 2010, 23andMe moved to a subscription model that required a one-year contract. At the time, subscribers were told that even if they chose to cancel their subscription after the contract expired, they would continue to have access to their genetic data, including the firm's Relative Finder service, which allows subscribers to identify and connect with relatives found through the company.

Last month, however, 23andMe changed its policy saying in the "FAQ" section of its website that those who cancel their subscriptions would be cut off from accessing much of their genetic information including reports that interpret their genetic data. Those who cancel their subscriptions will also no longer be able to view results of other members with whom they are sharing their genomes. Those people will no longer be able to see the former subscribers' results either.

Customers who choose to cancel their subscription to Personal Genome Service will still be able to access their raw genetic data and to download it but will not be able to access reports and tools to interpret their genomes.

The changes will start taking effect at the end of the month when the first one-year contracts signed a year ago begin to end and subscribers may decide not to renew.

According to Catherine Afarian, a spokeswoman for 23andMe, the company is changing its policy in order to protect the privacy of those who cancel their subscriptions. The concern, she said, is that those who do so may not want continuing subscribers to access their genetic information.

"If someone has ended their subscription with us, then it kind of begs some questions around privacy and their right to choices," she said. "One of the issues that was brought to our attention is that if someone has opted out of our service, they may not want to be included in Relative Finder after they've opted out."

She added that in changing its policy the firm is trying to balance the desires of those who want to continue to have access to their genetic information after they've decided not to renew their subscriptions with the desires of those who don't want their genetic information accessible to others.

"If they've chosen not to be a part of our service by ending their subscription, then we are kind of erring on the side of individual choices," Afarian said. "That means they will no longer be included in Relative Finder."

CeCe Moore who has covered 23andMe's policy change on her blog Your Genetic Genealogist told GenomeWeb Daily News in an e-mail, however, that those who've wanted to opt out of Relative Finder have always had the ability to do so by going to their privacy settings and checking a box.

"I can say that I am saddened by the effect this has already had on 23andMe's reputation, especially in the genealogy community," she said. "Their service is of great value to those of us researching our family history and it will be an unfortunate turn of events if genealogists no longer feel comfortable utilizing their service."

In a missive posted Thursday on 23andMe's blog The Spittoon, 23andMe Co-Founder and CEO Anne Wojcicki also suggested that there may have been some confusion about the company's original policy and terms of use.

"For the first time, we are making changes to our Personal Genome Service that are not additive, but rather clarify that the initial commitment covers genotyping while the ongoing subscription covers DNA analysis and interpretation along with access to our proprietary tools and technologies," she said. "We recognize that for some customers these changes modify their understanding of what is included in the Personal Genome Service, [and] we'll be evaluating various ways to address these concerns in the coming weeks."

Afarian said that because the subscription model is still new to 23andMe, it does not have a clear idea of how they will "impact our ecosystem. … We just need information so that we can go through a cycle so that we can understand what works well, what doesn't work well.

"There are lots of things on the table that we can consider [such as] incorporating certain features," she said. "There are all sorts of different scenarios where we may be able to adjust the types of accounts that have access to different features and tools.

"What we're trying to achieve from a business standpoint is how do we optimize our experience for everyone, yet still protect the interests of the individual," Afarian said.

Moore, however, said that senior management at 23andMe has told her that the changes "would combat the problem of the often-complained-about low response rate in Relative Finder by eliminating those who are not interested enough to continue their subscription."

She believes the decision is one based purely on revenue generation. Though she understands 23andMe's need to make a profit, "reversing a previously stated policy after the customer has purchased and fulfilled their end of the commitment will only result in bad feelings and negative publicity for the company. I can only imagine that alienating their 'goodwill ambassadors' will ultimately lead to reduced revenues."

Another 23andMe customer identified as Larry Vick has started an internet petition to try to force the company to reconsider. According to Afarian, though, the company intends to move ahead with the planned changes.

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