Scientists Are Just as Confused About the Ethics of Big-Data Research as You

Sarah Zhang at Wired: “When a rogue researcher last week released 70,000 OkCupid profiles, complete with usernames and sexual preferences, people were pissed. When Facebook researchers manipulated stories appearing in Newsfeeds for a mood contagion study in 2014, people were really pissed. OkCupid filed a copyright claim to take down the dataset; the journal that published Facebook’s study issued an “expression of concern.” Outrage has a way of shaping ethical boundaries. We learn from mistakes.

Shockingly, though, the researchers behind both of those big data blowups never anticipated public outrage. (The OkCupid research does not seem to have gone through any kind of ethical review process, and a Cornell ethics review board approved the Facebook experiment.) And that shows just how untested the ethics of this new field of research is. Unlike medical research, which has been shaped by decades of clinical trials, the risks—and rewards—of analyzing big, semi-public databases are just beginning to become clear.

And the patchwork of review boards responsible for overseeing those risks are only slowly inching into the 21st century. Under the Common Rule in the US, federally funded research has to go through ethical review. Rather than one unified system though, every single university has its own institutional review board, or IRB. Most IRB members are researchers at the university, most often in the biomedical sciences. Few are professional ethicists.

Even fewer have computer science or security expertise, which may be necessary to protect participants in this new kind of research. “The IRB may make very different decisions based on who is on the board, what university it is, and what they’re feeling that day,” says Kelsey Finch, policy counsel at the Future of Privacy Forum. There are hundreds of these IRBs in the US—and they’re grappling with research ethics in the digital age largely on their own….

Or maybe other institutions, like the open science repositories asking researchers to share data, should be picking up the slack on ethical issues. “Someone needs to provide oversight, but the optimal body is unlikely to be an IRB, which usually lacks subject matter expertise in de-identification and re-identification techniques,” Michelle Meyer, a bioethicist at Mount Sinai, writes in an email.

Even among Internet researchers familiar with the power of big data, attitudes vary. When Katie Shilton, an information technology research at the University of Maryland, interviewed 20 online data researchers, she found “significant disagreement” over issues like the ethics of ignoring Terms of Service and obtaining informed consent. Surprisingly, the researchers also said that ethical review boards had never challenged the ethics of their work—but peer reviewers and colleagues had. Various groups like theAssociation of Internet Researchers and the Center for Applied Internet Data Analysis have issued guidelines, but the people who actually have power—those on institutional review boards–are only just catching up.

Outside of academia, companies like Microsoft have started to institute their own ethical review processes. In December, Finch at the Future of Privacy Forum organized a workshop called Beyond IRBs to consider processes for ethical review outside of federally funded research. After all, modern tech companies like Facebook, OkCupid, Snapchat, Netflix sit atop a trove of data 20th century social scientists could have only dreamed up.

Of course, companies experiment on us all the time, whether it’s websites A/B testing headlines or grocery stores changing the configuration of their checkout line. But as these companies hire more data scientists out of PhD programs, academics are seeing an opportunity to bridge the divide and use that data to contribute to public knowledge. Maybe updated ethical guidelines can be forged out of those collaborations. Or it just might be a mess for a while….(More)”