May 3, 2016 — University of Houston Law Center Professor Barbara J. Evans will be the opening presenter at the annual conference of the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School on May 6.
The conference, titled “Big Data, Health Law, and Bioethics,” gathers 21 leading scholars from around the world to present papers exploring health industry impacts of big data—the popular catchphrase for very large-scale information systems that contain deeply descriptive data about tens or even hundreds of millions of individuals.
Harvard’s Petrie-Flom Center organized the conference in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab at the University of Zurich.
Evans will discuss paradigm-shifting impacts big data is having on bioethics. “The very concept of what individual autonomy means is shifting in ways that herald a maturing of bioethics from self-consciousness to social consciousness and collaboration,” Evans said.
“Twentieth-century bioethics advanced an atomistic vision of autonomy that empowered individuals to make decisions only as individuals, but failed to supply a roadmap for collective action. Collective action turns out to be exactly what we need in the 21st century if we are going to overcome grand challenges like curing and preventing cancer while insisting on adequate privacy protections, which to date we have never received.”
Evans’ conference paper, “Big Data and Individual Autonomy in a Crowd,” advances a vision of consumer-driven data commons that empower patients and research subjects to control access to their personal health data through democratic data self-governance processes.
The conference starts at 8:30 a.m. on May 6 in Wasserstein Hall at Harvard Law School. Registration has closed with a waiting list, but the conference will be live tweeted and videos will be available after the conference. The 21 conference papers, selected from a field of about 150 submissions through a peer-review process, will be republished later as an edited book.