I know, I know. You're tired of hearing me drone on about Facebook. I'm tired of hearing me talk about Facebook, too. But this is actually a different Facebook controversy.
Reuters broke the story on Friday, citing anonymous sources:
The company is exploring creating online "support communities" that would connect Facebook users suffering from various ailments. . . . Recently, Facebook executives have come to realize that healthcare might work as a tool to increase engagement with the site. One catalyst: the unexpected success of Facebook's "organ-donor status initiative," introduced in 2012. The day that Facebook altered profile pages to allow members to specify their organ donor-status, 13,054 people registered to be organ donors online in the United States, a 21 fold increase over the daily average of 616 registrations . . . . Separately, Facebook product teams noticed that people with chronic ailments such as diabetes would search the social networking site for advice, said one former Facebook insider. In addition, the proliferation of patient networks such as PatientsLikeMe demonstrate that people are increasingly comfortable sharing symptoms and treatment experiences online. . . . Facebook may already have a few ideas to alleviate privacy concerns around its health initiatives. The company is considering rolling out its first health application quietly and under a different name, a source said.
I'm quoted in this International Business Times article about Facebook's rumored plans. What follows is the full statement I provided to the reporter (links added). (I love it when a journalist will let me email my thoughts to him or her; I can better control what I say and after they use one or two sentences, the rest becomes an instant blog post.)
It's hard to comment too much, since the details are at this point so vague. But here are some thoughts. There's nothing inherently wrong with creating free online fora centered around particular medical conditions, including very serious ones, inviting patients suffering from those conditions to share their experiences with each other, and conducting research on and even selling that data to third parties. That's exactly the model that PatientsLikeMe uses. That patient network was created by the brothers and friend of a man with ALS and it has proved critical for many patients suffering from some 1500 diseases and critical for science. The Personal Genome Project, begun by Harvard geneticist George Church and now with additional university sites in Canada and the UK, is similar. [Disclosure: I'm a PGP research subject through which I have published by whole genome sequence and sensitive medical data online. I have not identified my PGP profile by name, although genomic data is inherently re-identifiable and PGP subjects were the target of a pair of re-identification attacks by privacy scholars last year. I'm also a member of the board of directors of PersonalGenomes.org, the nonprofit created to support the PGP and similar initiatives.]
Openly sharing such sensitive information online is the last thing many people would want to do, and it's not for everybody. But there are lots of reasons why many benefit from such fora. Connecting with others who share and can understand your experience can be psychologically critical, and for some ill people, such as those with limited mobility or rare conditions, an online forum may be the only feasible way of achieving this benefit. Such online fora needn't be open to researchers and others, but again, many patients prefer to openly share their experiences. Privacy can be important, but secrecy can also take a toll, especially for those with stigmatized conditions. Sharing patient data as widely as possible is the best way to accelerate research into those conditions, and many patients feel that playing even a modest role in accelerating research is empowering.
If true, it's troubling that Facebook is considering initially launching its health application under a different name, presumably in order to conceal its connection to Facebook and what many view as its checkered history of privacy practices. Individuals have the right to decide how open they want to be with their personal information, and they also have the right to decide for themselves whether Facebook can be trusted to stick to whatever terms it offers the users of its health application.