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

Click here for the event poster.

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.

Monday March 12, 2012

College 8, 301

Time: 12:30-2:00PM

Between its founding in 1966 and its formal end in 1980, the Black Panther Party blazed a distinctive trail in American political culture. The Black Panthers are most often remembered for their revolutionary rhetoric and militant action. Here Alondra Nelson deftly recovers an indispensable but lesser-known aspect of the organization’s broader struggle for social justice: health care.

The Black Panther Party’s health activism– its network of free health clinics, its campaign to raise awareness about genetic disease, and its challenges to medical discrimination–was an expression of its founding political philosophy and also a recognition that poor blacks were both underserved by mainstream medicine and overexposed to its harms.

Nelson argues that the Party’s focus on health care was practical and ideological and that their understanding of health as a basic human right anticipated current debates about the politics of health and race.

This event is co-sponsored with Sociology and Critical Race and Ethnic Studies.

Herman Gray (Sociology) will be a respondent.

Thursday January 26, 2012, 3:00-5:00 PM

Engineering 2, Room 399

Epigenetics has turned food and its metabolism into a problem that is not just about how the body turns food its basic components–carbohydrates, fat, protein-but how food acts as a signal of the environment–both biological and political.   Hannah Landecker will explore what this transformation of metabolism and epigenetics reveals about food, environmental politics, and the increased salience of metabolism as a sight for biological understanding and political and moral contestation.

Tuesday, January 31, 2012, 4-6pm

Engineering 2, 599

Beatriz Labate has studied the scientific and social features of psychoactive substances for over 15 years.  In this meeting we will discuss the situation surrounding the compound ayahuasca, a psychedelic used in both medical and spiritual contexts throughout the Americas.  By exploring the frontiers and limits between “therapeutic” and “religious” uses of ayahuasca (and their complicated legal implications) we will better understand the relationship between diverse forms of knowledge production associated with what have been called “sacred technologies.”

Monday, February 6, 2012

Engineering 2, 599

4:00-6:00 PM

This event is co-sponsored with Cultural Studies, Center for Biomolecular Sciences and Engineering—Research Mentoring Institute, and the Molecular, Cellular and Developmental Biology Department.

Dispute over Lab Notebook Lands Researcher in Jail