The Science and Justice Working Group brings together faculty and graduate students from all five academic divisions on the UC Santa Cruz campus-arts, humanities, social sciences, engineering, and physical and biological sciences-to promote interdisciplinary conversations and exchange. We expand UCSC’s historical focus on social justice to include questions about the formation of science and technology, and related public-policy debates.
May 8, 2012, 1-5:00 PM, UCSC University Center
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, 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
Mike Keller, Director of Technology and Software Development, Sage Bionetworks
Schedule:
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
Tuesday May 22, 2012
4-6:00 PM
Engineering 2, 599
Join us for a discussion of Science & Justice member Andrew Matthew’s recently released book, Instituting Nature: Authority, Expertise and Power in Mexican Forests (MIT Press).
Greater knowledge and transparency are often promoted as the keys to solving a wide array of governance problems. In Instituting Nature, Andrew Mathews describes Mexico’s efforts over the past hundred years to manage its forests through forestry science and biodiversity conservation. He shows that transparent knowledge was produced not by official declarations or scientists’ expertise but by encounters between the relatively weak forestry bureaucracy and the indigenous people who manage and own the pine forests of Mexico. Mathews charts the performances, collusions, complicities, and evasions that characterize the forestry bureaucracy. He shows that the authority of forestry officials is undermined by the tension between local realities and national policy; officials must juggle sweeping knowledge claims and mundane concealments, ambitious regulations and routine rule breaking.
Moving from government offices in Mexico City to forests in the state of Oaxaca, Mathews describes how the science of forestry and bureaucratic practices came to Oaxaca in the 1930s and how local environmental and political contexts set the stage for local resistance. He tells how the indigenous Zapotec people learned the theory and practice of industrial forestry as employees and then put these skills to use when they become the owners and managers of the area’s pine forests–eventually incorporating forestry into their successful claims for autonomy from the state. Despite the apparently small scale and local contexts of this balancing act between the power of forestry regulations and the resistance of indigenous communities, Mathews shows that it has large implications–for how we understand the modern state, scientific knowledge, and power and for the global carbon markets for which Mexican forests might become valuable.