Science & Justice Working Group: Are you my data?

Tuesday, May 8, 2012, 1:00 PM to 5:00 PM
Location: Alumni Room, University Center
Hosted By Jenny Reardon, Science & Justice Working Group

With the human genome sequenced and its variable sites mapped, governments and many other public and private actors now seek to make genomic data relevant to health, medicine, and society. However, to do so they must navigate the conjunction of two different approaches to data. In the biomedical domain, well-articulated infrastructures that limit access to biomedical data and commitments have arisen out of concerns about individual rights, patient privacy, and the doctor-patient relationship. This stands in stark contrast to the culture of open access forged by those who worked on the Human Genome Project, which has continued to be a central commitment of ongoing human genome research. Thus, architects of the genomic revolution face competing, complex technical and ethical challenges that arise from this meeting of domains that have substantially different ethos. Additionally, the rise of social media has led to a broad and contested discussion about the proper relationship between persons and data and who profits through access to it.  

This workshop aims to map out the challenges of building and controlling genomic data architectures that are responsive to these conditions. Rather than suggesting that either openness or privacy is the answer, the workshop will ask which kinds of openness and privacy might be possible and adequate, and in which contexts? Further, who has the authority to decide? Who can or should authorize the flow of data, and what forms of consent are required? What kinds of data flow should be allowed (e.g., ones that lead back to persons, etc.)? Finally, the workshop will consider questions around where and how data should be accessed. Is “the cloud” a viable option? What other options exist to manage deluging data, and what ethical and material challenges do they present?

While the workshop will focus on the specific context of genomics, the broader issues raised are not unique to genomics but are a part of the current gathering of fundamental and entwined issues of science, engineering, ethics, and policy at the site of data.

SPEAKERS:

David Winickoff, Bioethics and Society, UC Berkeley

Malia Fullerton, Bioethics & Humanities, University of Washington School of Medicine

Robert Zimmerman, Program Director, UCSC Cancer Genomics Hub

Mike Keller, Director of Technology and Software Development, Sage Bionetworks

COMMENTATOR:

Warren Sack, Film and Digital Media, UCSC, Associate Director, CITRIS Data and Democracy Initiative

Schedule

1:00-2:30 pm—Panel 1: The Collision of Privacy and Openness

2:30-2:45 pm—Break

2:45-4:15 pm—Panel 2: Creating and Sustaining Trust

4:15-4:30 pm—Break

4:30-5:00 pm—Agenda-setting for future discussions