Conference hosted by the Science & Justice Working Group Conference
sponsored by the UCSC Office of Research, and the UCSC Cancer Genomic Hub
Rap Report > Are You My Data? Symposium
With a human genome sequenced and a map of variable sites in that genome created, governments and many other public and private actors now seek to make genomic data relevant to health, medicine and the society. However, to do so they must navigate the conjunction of two different approaches to data. Within the biomedical domain there are important, well-articulated infrastructures and commitments arising out of concerns about individual rights, patient privacy and the doctor-patient relationship that limit access to biomedical data. This stands in stark contrast to the culture of open access forged by those who worked on the Human Genome Project, and that 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 these domains with 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.
The workshop will 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/should authorize the flow of data and what forms of consent are required? What kinds of flow of data 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?
Speakers:
Hosted by Jenny Reardon, Associate Professor of Sociology, UCSC
Co-hosted by Bob Zimmerman, Program Director, UCSC Cancer Genomics Hub,
David Winickoff, Assoc. Professor of Bioethics and Society, UC Berkeley
Malia Fullerton, Assoc. Professor in the Department of Bioethics & Humanities, University of Washington School of Medicine
Mike Keller, Director of Technology and Software Development, Sage Bionetworks
Schedule:
May 8, 2012, 1-5:00 PM | UCSC University Center
1-2:30 Panel 1: The Collision of Privacy and Openness
2:30-2:45 Break
2:45-4:15 Panel 2: Creating and Sustaining Trust
4:15-4:30 Break
4:30-5:00 Agenda Setting for Future Directions
Advanced Registration Required (free)
RSVP to: Fiona Weigant in the Office of Research: fweigant@ucsc.edu
