Facebook’s foray into genetic research

Last week, BuzzFeed, Mic, and a few other news outlets reported on a new genetics study involving Facebook: Genes for Good. That’s the name of the study, which is being conducted by scientists at the University of Michigan, and the name of a Facebook app that they are using to recruit tens of thousands of participants. It is the latest example of a convergence of medical research and social media (see the 23andme Parkinson’s disease study, the 23andme research portal, and Apple’s ResearchKit) that aims to amass vast quantities of data relatively quickly and inexpensively to learn about the genetic contribution diseases, but that also raise ethical concerns.

“DNA and Facebook are two words that most people do not want to hear in the same sentence,” Michelle Meyer, an assistant professor at the Union Graduate College-Mt. Sinai Bioethics Program, told BuzzFeed. But now that they are in the same sentence, what should journalists know to inform the public and keep scientists and social media giants accountable?

Genes for Good (the study) will use the app to ask participants questions about their medical history and other health-related information (such as how many hours they sleep each night). Participants also have the option of submitting a saliva sample for genetic analysis. The aim of the study, stated on the Genes for Good website, is “to learn how genetic mutations cause diseases and how genes interact with the environment to result in diseases.” This is just the kind of information needed to advance President Obama’s precision medicine initiative.

The Genes for Good website answers some obvious questions about Facebook’s role and access to personal data:

Why are you using a Facebook App?

We use Facebook because of its vast existing social network. If someone likes Genes for Good, they can tell their (Facebook) friends. Using Facebook will allow the study to grow both quickly and optimally – through word of mouth. Otherwise, the study is independent of Facebook. Facebook cannot access the information you provide to Genes for Good.

Can Facebook see my responses?

No, Facebook cannot see your responses. Responses and data are never housed or stored on Facebook, although you are logged in on Facebook while using the App. The App uses a database and a web server, located at our department at the University of Michigan, to deliver questions to you and a second data server to securely store the responses. Only study personnel have access to these servers.

Can Facebook see anything related to this study?

Facebook can only see whether and when you are using the App. They cannot see your responses, summary information, or genetic information.

Who can see my responses?

Only study personnel can see your responses and only very few trusted individuals have additional access to your identifiers, such as your name. This means that people who analyze your responses don’t know who you are; they only have a study number that we assigned to you.

Genes for Good says that privacy is protected on a secure server through industry-standard electronic security, but acknowledges that data security could be breached, exposing participants’ names and their health and genetic information.

Bioethicists who have commented on the study are less concerned about data breaches than about the impact of the data itself on participants. An unusual feature of the study is that participants will have access to their raw genetic data. In fact, this access is one of the ways that Genes for Good researchers are enticing people to join the study. “It’s their information, after all,” as the Genes for Good website says.

So what’s the problem?

The problem is that there is a lot of uncertainty about what raw genetic data means. The Genes for Good researchers, on the advice of the project’s ethical review board, won’t tell participants what the data suggests about their risk of diseases. Participants can take the data to their doctors or to services that advertise online, such as Promethease and SNPedia. But these services are unregulated by the Food and Drug Administration, and there’s no way of knowing how accurate their interpretations are. In fact, interpretations from doctors might not be much better, given how little is known about genetic information.

As Josephine Johnston, a bioethicist and the director of research at The Hastings Center told Mic: The real danger is in the uncertainty of the field itself – there’s still a great deal researchers don’t understand about genetic mapping. “You could end up putting too much weight on information that isn't really that strong yet," she said.”

Of course, uncertainty about the meaning of genetic data is the very problem that Genes for Good and other research involving Google-owned 23andme and Apple are trying to address. It will be interesting to see how well they do. Recruiting the hundreds of thousands of patients needed as the first step toward making precision medicine a reality is likely to be easier than shifting through their data and making sense of it: identifying genetic and other causes of diseases, and using them to find preventive measures and treatments targeted to individuals. What new privacy concerns will arise when pharmaceutical companies get involved, as in the partnership announced earlier this year between 23andme and Pfizer? Will the FDA step in to regulate genetic research powered by social media?