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Are You My Data? A Research Ethics Forum
May 8, 2012 @ 1:00 pm - 5:00 pm | University Center, UCSC
The Office of Research is sponsoring a series of Research Ethics Fora for faculty, postdocs and graduate students. The first forum in the Series “Are You My Data?” is on Tuesday May 8th in the Alumni Room of the University Center and is hosted by Prof. Jennifer Reardon of the Science & Justice Working Group. This is an excellent opportunity to learn more about the challenges of managing research data.
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 goal of the proposed workshop is 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/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?
While the workshop will focus on the specific context of genomics, of course the broader issues raised are not unique to genomics. We hope the workshop is only one of several we will host to consider the current gathering of fundamental and entwined issues of science, engineering, ethics and policy at the site of data.
1:00-2:30 Panel 1: The Collision of Privacy and Openness
2:45-4:15 Panel 2: Creating and Sustaining Trust
4:30-5:00 Agenda Setting for Future Discussions
*David Winickoff, Associate Professor of Bioethics and Society, UC Berkeley
*Malia Fullerton, Associate Professor in the Department of Bioethics & Humanities at the University of Washington School of Medicine
*Bob Zimmerman, Program Director, Cancer Genome Hub
*John Wilbanks, VP of Science, Science Commons