A story on Vox about a biologist who gifted his parents with 23andMe genetics tests, only to suffer the trauma of discovering that his father had had illegitimate son, has prompted a role reversal in company policy at Anne Wojcicki’s Mountain View, California-based biotech firm.
Last Friday, 23andMe was poised to change its “DNA relatives” tool (a popular family tree-building tool for its hardcore ancestry community) from an automatic opt-out feature to an automatic opt-in to view close relatives for existing customers. This meant that all users would instantly be offered information about whether they might be related to other 23andMe members–and family Christmases everywhere could suddenly become a lot more dramatic. Customers had been alerted to the pending transition with a notice that they’d have 30 days to make their own explicit choice before the opt-in default was activated. But plans were halted after a Vox story was published last Tuesday by a biologist who learned via 23andMe’s relative-finding feature that he had a secret half-brother and told his parents about it. The revelation ended up catalyzing his parents’ divorce and serious emotional upheaval in his family. After a long weekend of internal company discussions, Wojcicki announced on Sunday that 23andMe had put the brakes on their opt-in plans in honor of the company’s more immediate concern for the privacy of its customers.
23andMe already including a warning in section 4 of its terms of service: Once you have information about what’s in your genes, from the benign (the smell of your urine after a side of asparagus) to the alarming (a genetic marker that increases your risk for Alzheimer’s)–you can’t unknow it. In bold language, the contract also cautioned that there exists a rare and dramatic possibility that “You can learn your father is not your father.” But Terms of Service, for must of us, are just small words to skim, an ineffective speed bump at best, and this extra info, viewed unexpectedly, could come as an unwelcome life-changing shock to unwitting customers. “Not everyone who’s a sperm donor wants to connect with their children out there, right?” a 23andMe employee told me yesterday.
The move to automatically opt-in had begun as a response to customer satisfaction surveys. A chief complaint from 23andMe users was confusion around the close relative finder feature. Family members would sign up together, for instance, and if both didn’t explicitly opt in to the service they would not be matched as relatives. “’I joined with my brother, so where’s my brother?’” says 23andMe spokesperson Catherine Afarian, echoing a frequent bit of customer feedback. “So not only was it confusing people, but it made them question what else we got wrong. The data showed that the vast majority of our customers would have a better experience if we stopped automatically preventing people from making those connections.”
With Friday’s announced deadline for the switch come and gone, Wojcicki spent most of Saturday on the phone with her colleagues, as well as some of 23andMe’s more impassioned ancestry community members, who were eagerly awaiting the surge of new connections the promised automatic opt-in might provide.
On Sunday evening, Wojcicki delivered an admirably frank mea culpa to her community. “Core to our philosophy is customer choice and empowerment through data,” she wrote. “The Close Relatives features can potentially give a customer life changing information, like the existence of an unknown sibling or the knowledge that a relative is not biologically related to them. Customers need to make their own deliberate and informed decision if they want this information.” She also reiterated the company’s ongoing plans to hire a chief privacy officer, who will parse consent language to ensure that customers are equipped to make informed, conscious decisions about whether and how to receive potentially overwhelming information.
Wojcicki’s announcement had its detractors, of course, chiefly among genealogists and adult adoptees within the community. “Why is my right to learn who I am and my family history less important than the desire of someone who doesn’t want to know the truth about who they are? Why does 23andMe feel they have the right to deny me data about myself?” Or as another commenter sighed, “1 step forward, 23 steps back.”
But, as the company spokesperson reiterated, 23andMe is not solely a company for amateur genealogists, like ancestry.com. Its mission is to give its customers health information and access to their raw data. Managing the needs of its various customer subgroups is a messy business. The result of the last few days “boiled down to a fundamental conversation between passive consent and explicit, informed consent,” says Afarian. “We are not without empathy for those looking to find biological family members, but we also have to respect people who use 23andMe for other reasons.”