Frank Pasquale –
In her fascinating new book Automating Inequality, Virginia Eubanks recounts that the first “big data” set in the United States “was the Eugenics Records Office in Cold Spring Harbor. It was the public arm of the eugenics movement.” While the systematic collection of data has underpinned many important initiatives, it also has a dark side. Expect to see that dark side re-emerge with a vengeance in the next few years, as many American states intensify their surveillance of already disadvantaged groups.
Are there forms of knowledge that the state—or even university researchers—should not aspire to attain? Privacy law is meant to empower us with zones of thought and experience that no one can access without permission. Another branch of law, governing human subjects research, ensures that experimenters obtain consent before gathering data about individuals. As a member of the Council on Big Data, Ethics, and Society, I have thought and written about the types of data corporations and states should be able to gather about individuals, and the power relationships that data gathering entailed.
Like disputes over free expression, the politics of data gathering for social science research is becoming a fraught area for progressives. For some, knowledge is an intrinsic good. Research of all stripes is a way of better understanding ourselves and our world. But there is another, more Foucauldian perspective: Where does the burden of scrutiny fall? What complicity does a social scientist have with the regime that provides data? The construction of what counts as “success” or “failure” in a given study is a highly political decision. A particular focus on some data or metrics comes at the cost of an exclusion or devaluation of others (akin to the “jurispathic” judgments Robert Cover recognized). All these questions will be critical as America’s laboratories (or meth labs) of democracy concoct innovative ways of denying health care to the poor, and ask social scientists to study “what works” in health policy.
Evaluating the Costs of Program Evaluation
The Trump Administration recently announced an intent to grant states permission to condition Medicaid benefits on work requirements (via Section 1115 of the Social Security Act). Former CMS Administrator Andy Slavitt immediately condemned the move. Activists were even more outraged. Journalists chronicled the many ways the work requirements were likely to worsen health outcomes, while burdening the vulnerable with paperwork and bureaucratic hurdles. New state “flexibility” will translate into cruel cutbacks for the disabled (who now may be denied transportation benefits). Continue reading