The dark side of the ‘data-driven’

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.benthams-panopticon-copy.jpg

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

Why Civil Disobedience, and Why Now?

Amy Kapczynski – 

On December 5th, I joined hundreds of people from 32 states in Washington D.C to protest the Republican tax bill.  We packed the hallways outside of the offices of seven key members of Congress, and mic-checked one another so that people’s stories about the bill’s devastating consequences could be heard.   A group of us – around 130 in total – refused to leave when the Capitol police arrived, and were arrested.

It was in many ways not an unusual act – the next day, more than 200 people were arrested in D.C. demanding a Clean Dream Act.  I’m heading back to D.C. today for another protest, joining hundreds more in a last ditch effort to head off the tax bill.*

25440722_10156090406488701_1877332242_o

Many people have thanked me for what I did two weeks ago.  Perhaps it’s because I’m a law professor.  Or perhaps it’s because so many of us are wondering what more we can – or must – do to save our democracy and bring about a more equal society.

Confrontational protest and civil disobedience are an indispensable part of the answer. Here are five thoughts on why I decided to participate in the protest, and what it means to me, and what I hope it might mean to some of you.   Continue reading

The Epicycles of Health Care Market Design: Time for a Paradigm Shift in Health Policy

Frank Pasquale – 

Back in June, I attended the annual conference of health law professors held by the ASLME. This conference is a real intellectual feast for anyone interested in political economy. National experts describe the latest developments in the Affordable Care Act’s exchange marketplaces. Antitrust scholars consider the proper balance between delivery system integration and competition in accountable care organizations. The role of the state in structuring economic activity is critical to nearly every panel on insurance markets, licensure, and access to care.

SinglePayerNow

But there was very little buzz about what has become one of the hottest topics in progressive health policy in 2017: state efforts to develop single-payer health care systems or public options (like a Medicaid buy-in). Politicians and activists appear to be leading this charge, pushing proposals in California, Nevada, and New York. They have generated a lot of enthusiasm, and they will get more attention if the GOP manages to repeal the individual mandate and further damage insurance markets. Even self-described neoliberal Matt Yglesias has called on experts to further develop ideas here. And yet the academy seems slow off the mark. What explains this tardiness?

I think part of the problem is the sheer complexity—and thus intellectual challenge—of market design in a neoliberal era. Sarah Kliff recently eulogized the great health care economist Uwe Reinhardt by memorializing the “joy he always took in trying to understand the maddening, baffling inner-workings of the American health care system.” “Joy” seems like an odd emotion to express, upon encountering the complexities of ERISA, MedPAC, MACRA, MIPS, and the rest of the health care finance alphabet soup. But once you teach in these areas, the incrementalism of the well-informed is hard to shake. Continue reading

Your Money or Your Life?

Amy Kapczynski – 

High drug prices are a major problem in the United States. In the Washington Post today, Aaron Kesselheim and I have an op-ed about what President Trump could do – immediately – to lower drug prices, if he had any intention of following through on all of those campaign promises and tweets. 649816939_1280x720(We also explain why his nomination of Alex Azar to head HHS is a clear sign that he will do none of this.)

Here I wanted to say more about the stakes of the drug pricing problem, and about one option we describe – a little known patent “eminent domain” power that could be a powerful tool to lower drug prices.

Continue reading

Why “Intellectual Property” Law?

Amy Kapczynski – 

When I entered law school in 1999, I was primarily interested in two things: HIV/AIDS, and critical approaches to human rights.  I was also young and queer, and Bowers v. Hardwick was the law of the land.  Sodomy was illegal in many states, and so, it seemed, was I.  So, I was also deeply interested in the law of sexuality.

MSF_access_A4_poster_ring

Médecins Sans Frontières (MSF) poster

I ended up teaching and writing about intellectual property (IP) law.  My 1L self would not have believed it. (I even have the picture to prove it).

As a prelude to a series of future posts about my work in this field, I wanted to describe how I came to IP law – or rather, how it came to me.  If you aren’t sure what IP means or why it is important to social justice today, this post is for you.  The same is true if you are wondering how someone interested in law and political economy develops a research agenda, and why someone might choose patent law as a key part of it. Continue reading