Author Archives: aimurray

Nov 08, 2012 | Democracy Deluge: End Games of Science and Politics – Jenny Reardon

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Jenny Reardon, Science & Justice Research Center Co-Director and Associate Professor of Sociology

Sociology Department Colloquium

Monday, November 26, 2012

12:30-2:00PM

301 College 8

Today ideals of participatory democracy that have long grounded Euro-American imaginaries of truth and freedom play important structuring roles in the natural sciences.  This represents a dramatic change for a domain of human activity that in the 20th century built its credibility largely through circumscribing itself as apolitical. While some celebrate these developments as part of the new spring for democracy, might this “unnatural” spread suggest a different reading?  This talk takes up this question through an analysis of a decade-long effort to render genomics democratic.  It explores what the rise of the “democratic genome” reveals about the limits of dominant narratives of “science and politics,” and what it might tell us about contemporary practices and conditions of democracy, justice and knowledge.

Oct 27, 2012 | Rethinking Development in Light of Climate Change

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Interdisciplinary Development Working Group

Saturday October 27, 2012

9AM-5:30PM 

Oakes College

Invited speaker: Dr. Hallie Eakin, School of Sustainability, Arizona State University.

Increasingly climate change impacts have called into question the sustainability of development policies and practices. At the same time, development efforts share many of the goals of climate change adaptation and mitigation. Scholars and practitioners in both areas have recognized the need for more collaboration across these two fields to address the critical challenge of integrating development planning and climate action in ways that promote positive synergies and avoid past failures. This conference brings together scholars from a range of disciplines to explore to what extent the awareness of climate change causes and impacts is transforming development theories and practices.

For more information about this event please click here.

About the Interdisciplinary Development Working Group (IDWG): IDWG at UCSC provides a forum for faculty and students from all disciplines to discuss issues of development.  Our sessions center around members’research, close readings of selected texts, and presentations from invited guests. We engage with several of the sub-themes in development such as rural/urban dynamics, environmental change, social justice, natural resource management, and international  governance.

This event is made possible through the support of CGIRS, the Science and Justice Working Group, the Sociology Department and the Environmental Studies Department at UCSC.

 

Please direct any questions to idwg@ucsc.edu

Oct 25, 2012 | Enacting Multiple Salmon: Conversation across disciplinary practices

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Science & Justice Working Group Meeting

October 25, 2012

2:00-4:00 PM

Oakes Mural Room

This event brings together different accounts of salmon, some from social scientists and some from natural scientists who each will describe, and reflect upon how ‘their’ salmon is constituted, first in describing their particular research on questions of wild and domestic salmon in the US, and in then in a public conversation with each other and with the audience. We will hear from Robin Wapless, from NOAA in Seattle, from Rachel Barnett-Johnson from the Biology department at UCSC, from John Law a sociologist at the Open University in the UK, and from Marianne Liene, an anthropologist from the University of Oslo. Together, these scientists know salmon through widely different practices, from salmon hatcheries in California, to aquaculture sites in Norway, from laboratories, from textbooks, and from scientific articles and environmental regulation.

What are the defining traits of the salmon, and what distinctions do they look for? How were they attracted to salmon, and what are the practices through which they come to know salmon? What material, historical, and perhaps ethical entanglements are involved in the practices through which salmon is rendered known?

A special focus is on the notion of the wild; and its semi-domesticated other: What is a wild salmon, and how is it different from a hatchery salmon or a farmed salmon? How can we contribute to an environment that accommodates and nurtures different kinds of salmon?

This is not so much a debate about what salmon really is, as a dialogue across disciplines about all the different forms that are involved in our shared, but different, efforts to know the world we all inhabit.

Co-sponsored by the University of Oslo and the UCSC Environmental Studies and Anthropology Departments.

Oct 09, 2012 | Ethnicity and Security: The Wen Ho Lee Case

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Science & Justice Working Group Meeting with Jeffrey Bussolini (CUNY)

The treatment and legal case of Taiwanese-American physicist Wen Ho Lee is a remarkably instructive account of the troublesome intersecting dynamics of ethnicity and security in US national security institutions on the eve of the September 11th transformations. Perhaps most shocking is that some of the same techniques that became notorious after 9/11 (sensory deprivation, techniques of humiliation through shackling and temperature control) were previewed in Lee's treatment. In this respect, and in the mechanics of the case itself which are still poorly understood, the Lee case serves as an invaluable instance of what Foucault would call "the history of the present" in which the techniques of the post-9/11 security state were not simply created out of whole cloth, but were the amplifications of practices that had already been developed within US security and justice systems.

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Sept 27, 2012 | Genomics Gets Personal: Property, Persons, Privacy

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Introduction by David Haussler, Director of the UCSC Center for Biomolecular Science & Engineering and the UCSC Cancer Genomics Hub). 

Panelists:

Gail P. Jarvik, M.D., Ph.D., Head, Division of Medical Genetics, The Arno G. Motulsky Endowed Chair in Medicine & Professor of Genome Sciences, University of Washington Medical Center

Robert Cook-Deegan, M.D., Research Professor, Genome Ethics, Law & Policy, Duke University, Director, Center for Genome Ethics, Law and Policy, Duke Institute for Genome Sciences & Policy, Author of Gene Wars: Science, Politics and the Human Genome Project

John Wilbanks, Director, Sage Bionetworks, Director, Consent to Research project (CtR), Co-founder of the Access2Research petition
Senior Fellow in Entrepreneurship at the Ewing Marion Kauffman Foundation

Ryan Phelan, Founder, and former CEO, DNA Direct by Medco
Board member, Personal Genome Project, Founder Direct Medical Knowledge, Founding Executive Director of Planetree

Roundtable discussion moderated by Jenny Reardon, Director of the Science & Justice Research Center and Professor of Sociology at UC Santa Cruz.

Tremendous advances in sequencing technologies have transformed genomes into a valuable new source of data about the biology of individuals. While these new data promise a revolution in medical care, more immediately they pose fundamental new ethical, social and legal questions about ownership and control of our bodies and their molecular constituents.

• To what extent are genomes the property of persons, and thus subject to their control?

• To what extent should genomes be shared in pursuit of medical breakthroughs or profit by others?

Please join a panel of experts to explore these questions and offer insights on how we can advance personal genomics within ethical and legal frameworks that respond to these fundamental questions about individual rights, property, and the nature of public goods in a genomic age.

A  special event featuring a panel discussion on the ethical and legal questions around personal genomics, hosted at UCSF Mission Bay Campus Byers Auditorium at Genentech Hall, 600 16th Street, San Francisco.

ARCHIVE VIDEO

"Genomics Gets Personal: Property, Persons, Privacy"
SJWG Rapporteur Report
27 September 2012
Reporter: Martha Kenney
“Genomics Gets Personal: Property, Persons, Privacy” took place at UCSF’s Mission Bay
Campus on September 27th, 2012. Renowned Bioinformatics researcher David Haussler, in his
introduction to the event, explained that in the next phase of genomics research that the hardest
challenges will not be the technological or medical problems but the social issues. He suggested
that interdisciplinary initiatives like the Science & Justice Research Center are necessary to
investigate and address these social issues. Jenny Reardon, the chair of the proceedings,
introduced the topic of personal data by reminding the audience that not long ago there was no
such thing as “personal data.” We did not grow up with the idea of personal data, but in the age
of Facebook our lives are not only mediated by data but our bodies have become new, potentially
valuable, sources of data. The Science & Justice Research Center has been experimenting with
bringing novel groups of interdisciplinary researchers together to address these novel problems.
This event convened a panel of four world-class medical and legal experts from the public and
private sectors around two questions unique to problems that emerge from the rise of “personal
data”:

• To what extent are genomes the property of persons and subject to their control?
• To what extent should genomes be shared with others for the purpose of medical
breakthroughs or profit?

Prof. Reardon posed a question to each of the panelists that drew on their unique perspectives on
personal genomics. Through the course of the discussion it became clear that the speakers had
differing opinions on key issues that were based in their personal experience with genomics and
how they were positioned in the field. For example, on the topic of citizens having access to
their own genome sequences for diagnostic purposed, there were critical difference between the
different responses.

Gail Jarvik spoke about her practice of finding actionable genes for clinical intervention through
targeted exome sequencing rather than genome sequencing. This approaches is less expensive
and doesn’t return results for genetic conditions that clinicians are not testing for. The data is not
returned to the patient or their doctor because of the risk of misinterpretation. John Wilbanks,
Director of Sage Bionetworks, however, argued that patients have a right to their data and that
taking the data out of the hands of academics needs to become a more viable alternative.
Consumer health advocated Ryan Phlean said that that the opinion that genetic data is too
dangerous and confusing for public consumption is flawed. When there are good ways to
interpret genomic data accessible online genomic data will be useful to the public. Robert Cook-
Deegan, Professor of Genome Law, Health and Policy at Duke University, agreed that people are
becoming less tolerate to the older model where the doctor acts as an intermediary between
medical tests and the patients, but unmediated access to data for patients is only one of the
competing models doctors have to choose between as genomic sequencing becomes more
prevalent.

Questions of informed consent and patients as research partners also played a prominent role in
the discussions. Robert Cook-Deegan referenced the article, “Glad you asked: Participants'
Opinions of Re-Consent for dbGaP Data Submission” as evidence that patients prefer to be asked
when their data is used for a purpose different than the original study, but once asked they are
positively inclined to share their data. Gail Jarvik, who was one of the co-authors on that article,
cautioned that the patient sample was very homogenous, containing mostly white middle-class
Americans. The question of homogeneity is an important one for both scientific and ethical
questions. John Wilbanks joked that scientists he worked with thought they would “find the
Apple gene” because their sample population was all affluent, white men who are the first to buy
the next iPhone. While Ryan Phlean suggested that this is the demographic of “early adopters”
and will change as the technologies become more ubiquitous, Robert Cook-Deegan cautioned
that we should revisit the connection between genetics and eugenics in this context. Different
groups are and will be experiencing the risks and benefits of these technologies in different ways.
This point was echoed during the open question period by Kate Darling, a graduate student in
Medical Sociology at UCSF, who noted that people are drawn into medical contexts in highly
varied, uneven, and contradictory ways. A prison inmate experiences genomics differently that
someone who pays 23andMe for genomic sequencing. Paying attention to this uneven landscape
of medicalization is key for doing bioethics in an age of personal genomics.

It was clear from the questions and varied responses that the territory of personal genomics is
still very much in formation. Questions of sharing and privacy, consent and re-consent, diversity
and inequality, paternalism vs. partnership vs. personal knowledge, and who should profit from
genomic data are currently at stake and could be addressed in multiple different ways. Forums
such as this event are an important part of building a future for personal genomics that takes into
account the social issues that arise with the new genomic technologies and is informed by
different situated (sometimes contrasting) perspectives.

Aug 19, 2012 | Modelling pigs and humans: Exploring the practices of models across sciences

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Wednesday October 19, 2011

Engineering 2, Room 599

PhD Fellow Vibeke Pihl, Medical Centre for Science and Technology Studies, Department of Public Health, University of Copenhagen.

Vibeke Pihl’s research addresses how connections between humans and animals are shaped in contemporary biomedical research on human health. During an ethnographic multi-sited fieldwork, Vibeke has followed a group of Danish biomedical researchers working to establish a pig model for human obesity surgery. In biomedicine, the pig is increasingly established as a preferred model organism in biomedical research on human obesity due to an argued biological resemblance between pigs and human anatomy and physiology. The topic of the SJWG event concerns an analysis of how the use of pigs as models for humans does not rest solely on biological connections, but requires social, moral, economical and cultural connections to support the choice of the pig as the appropriate model for obese human bodies. In addition, the presentation will address how models are practised in biomedical science and social science. Drawing upon fieldwork, the presentation will focus on how the analysis of the biomedical researchers’ establishment of a pig model prompt a simultaneous crafting of a social scientific model of human-animal relations. Vibeke asks which connections between humans and pigs are included and excluded in the research practices of biomedical scientists’ and the practices of social scientists like her own. With this presentation, Vibeke wants to provide an opening for a stronger mutual engagement between researchers across sciences working with animals as models of humans.

Fall 2012 | Science & Justice Working Meetings

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John Kadvany: A Very Short Introduction to Risk

Wednesday, October 5, at our normal time and place (Eng 2 599. 4:15-6:15).

John Kadvany will join us to discuss the concept of risk. Oxford University Press recently published John’s book on risk, entitled Risk: A Very Short Introduction. Given that so many of us in the group are interested in thinking well about risk–whether in the context of genomics or the climate or engineering design–we are particularly pleased to have John kick the year off.

Click here for an introduction to some of John’s ideas about risk.

Kadvany often works on project teams organized by an engineering company in charge of a large public works project. His role is to design and help implement a decision process in which engineers, external stakeholders, lawyers and regulators work their collective way through multiple competing options in an efficient, democratic and cooperative manner. He will design an analytical frameworkthat’s useful all around including the measurement techniques which can be used to accommodate relevant models, data, and professional or lay judgment of various qualities. Often these processes lead to a group “opinion survey”, a combined technical-policy document which summarizes stakeholder perspectives. His methods combine the analytical techniques of multiple values decision analysis with the approaches developed in the last two decades through the public participation movement.

Aug 18, 2012 | The Black Panther Party and The Fight Against Medical Discrimination

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Alondra Nelson (Colombia, Sociology)

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.

May 22, 2012 | Authority, Expertise and Power in Mexican Forests: A Discussion with Andrew Mathews

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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.

Andrew Mathews, "Authority, Expertise and Power in Mexican Forests"
SJWG Rapporteur Report
22 May 2012
Rapporteur: Martha Kenney, History of Consciousness
Andrew Mathews , Assistant Professor of Anthropology at UCSC, spoke to us about his new
book, Instituting Nature: Authority, Expertise and Power in Mexican Forests. Drawing on his
background in forest ecology, Mathews investigated the uses of and discourses around fire in
Mexican forests using historical, ethnographic, and scientific methods. Although pine forests
need fire for growth and regeneration, the Mexican state has demonized the use of fire,
characterizing it as destructive, catastrophic, and abnormal. For officials, who are tasked with
the responsibility of maintaining orderly landscapes, the practice of using fire to maintain the
forest seems messy and incomprehensible. Because of the dominance of this official discourse
and because of the illegality of burning many of the people Mathews spoke to claimed that fire
was not used to maintain the surrounding forests (even though there was evidence of fire
histories). Although there is an official form to apply for permission to burn, no one has ever
applied. Mathews argued that these “official channels” prevent agricultural practices from
becoming official knowledge, silences multiple knowledges, and prevents people from
understanding the agricultural uses for fire. His ethnographic work, for example, shows that the
younger generation only had negative views of fire as something that needed to be fought and
controlled. Older people, on the other hand, tended to see fire as a kind of ally in growing crops,
not a dangerous force outside of human sociality. As fire is made illegal, agricultural history is
forgotten. The government’s demands for legibility and transparency are producing doubt and
confusion. Overall, Mathews showed how looking at fire helps us to think about “The State” in
a concrete way and opens up important questions about which forest management practices can
survive and in what form.

During the Q&A Jenny Reardon asked about how Mathews’ hybrid methods articulated different
forms of evidence. Mathews said that he looked for resistances and uncertainty in his methods.
He was interested in surprise and the limits of method. Multiple knowledges destabilize each
other in productive ways. Anna Tsing picked up the question of science and justice and wanted
to know if there was such a thing as “justice for pines.” Mathews talked about the agencies of
pines and how they have memory and imagination build into their structure. Matthias wanted to
know what nations have against fire. Mathews said that the distrust of fire stems from
imaginaries of rural disorder and power of fire to transform landscapes in unpredictable ways.
Transformation is difficult for governments to deal with, since they strive to create order. These
and other questions helped to further draw out the stakes of Mathews’ project and connect them
to larger S&J questions about interdisciplinary knowledge, more-than-human justice, and the role
of discourse and state regulation in shaping technoscientific practices.

May 08, 2012 | Are You My Data? Symposium

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Conference hosted by the Science & Justice Working Group Conference
sponsored by the UCSC Office of Research, and the UCSC Cancer Genomic Hub

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.

Continue Reading May 08, 2012 | Are You My Data? Symposium