Genomics Gets Personal: Property, Persons, Privacy

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.

Rap Report > Genomics Gets Personal: Property, Persons and Privacy

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.

Modelling pigs and humans: Exploring the practices of models across sciences

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.

Upcoming Regular Science & Justice Working Meetings

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.

The Black Panther Party and The Fight Against Medical Discrimination

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.

Can Science Have Progressive Goals? A Discussion with Alondra Nelson

Tuesday, March 13, 2012
4-6:00 PM in Engineering 2, 599

Narratives of scientific progress are often paired with narratives about political progress, suggesting that the expansion of scientific knowledge always—or at least generally—leads to the betterment of humankind as a whole. But many socially disadvantaged and oppressed peoples contend that such “progress” is distributed unevenly and often comes at some cost to them. Alondra Nelson will share some of her research on Black politics and genetic genealogy to open a discussion on whether science can have progressive ends, if there can truly be a “science for the people,” and how science and justice can have paired or oppositional goals.

Herman Gray (Sociology) will be a respondent.

Eating Information? Food and Metabolism in Epigenetic Perspective

Hannah Landecker (UCLA Center for Genetics and Society)

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.

Scientific Research on Ayahuasca and Health

Bia Labate

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.”

Another World is Plantable! Film Screening with director Ella von der Haide

Another World is Plantable! Part 4

Documentary on Community Gardening and Food Justice in North America 2010

Thursday 10/27, 4:30-6:30 PM, Studio C (Room 150 in Communications Building)

Director: Ella von der Haide

In a series of four documentaries, Ella von der Haide features urban community gardens and their connections to emancipatory social movements in South Africa, Argentina, Germany and North America.

Urban community gardening is a phenomenon that is spreading throughout the world. At the core of the films are gardening activists who explain how and why their gardens are a “green oasis” within the city, as well as projects of resistance that bring “another world” into being. The films also show the critical and ambivalent ways in which the gardening movements can be instrumented by neoliberal regimes.

North America has a vibrant community garden scene that is currently developing into a broad social movement for food justice. Through the local production of ecological food for subsistence and for sale at farmers’ markets, community gardeners not only construct an alternative to the agro-industrial business and “food deserts”, they simultaneously create a new local self-reliance and new discourses on justice.

The community gardens portrayed in this film, in New York, Detroit, San Francisco and Vancouver, are all engaged in different social change processes, from anti-racist resistance and post-colonial healing to indigenous self-determination and queer-feminist environmental politics.

The director will be present for Q&A.

More information on the film and research: www.communitygarden.de

Information on the director:

Ella von der Haide is a Dipl.-Ing. of Urban and Regional Planning, Garden Activist and feminist Filmmaker from Germany.

Contact: post@ella-von-der-haide.de

Sponsored by: SJWG, Film & Digital Media, and Center for Agroecology and Sustainable Food Systems

Information, but Meaning? The Value of Genomics

Andro Hsu with discussion by Ted Goldstein and Whitney Boesel

November 9, 2011

Engineering 2, Room 599

4:15-6:15 PM

Andro Hsu (VP of Products at GigaGen and former science writer and policy advisor at 23andMe) will join us for a discussion of what we are learning—both about policy/society and biology—as increasing resources are put into turning the ever growing amounts of genomic information into something of value. Ted Goldstein, PhD candidate at the UCSC Center for Biomolecular Sciences and Engineering, will provide a response to Hsu presentation.