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.

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.

"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.

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.

Alondra Nelson, "Can Science Have Progressive Goals?"
SJWG Rapporteur Report:
13 March 2012
Rapporteur: Martha Kenney, History of Consciousness
Alondra Nelson, Associate Professor of Sociology at Columbia, spoke to us about DNA testing
in African American communities. She framed her talk with articles from Nicholas Wade and
Craig Venter that argued that genomics has not lived up to its original hype. Nelson said that
despite these pronouncements there is currently a lot going in genomics outside of medicine.
She suggested that the logics of DNA analysis have made their way into our culture as social and
political technologies.

Nelson used the popularity of the genetic ancestry testing company “African Ancestry” as her
primary example. When she conducted her fieldwork, Nelson was interested in “how and why
African Americans would put their DNA in an envelope and send it to a stranger,” especially
given the vulnerability of African American communities in the history of American biomedical
institutions. She found that “African Ancestry” appealed to pre-existing genealogical
organizations, whose members were mainly middle class women, ages 50+ engaged in practices
of “kin keeping.” In this context Nelson became interested in what she calls “the social life of
DNA,” the way that DNA and genetic technologies takes on meaning in social worlds. “The
social life of DNA” serves as a reminder that genetic technologies are not only one thing (e.g.
bio-informatic technologies tied to histories of oppression) but take on different political
possibilities in different historical and social contexts.

Nelson also found that African American consumers were drawn to “African Ancestry” because
of the involvement of a scientist named Rick Kittles. Early in his career Kittles had been
instrumental in contesting how the remains in an African American burial ground in Lower
Manhattan were classified. Familiar with the racism in the history of physiology, Kittles
believed the remains should be analyzed for what he framed as their “ethnic” origins not their
race. This earned Kittles the trust of African American communities; Nelson referred to him an
“authentic expert”—someone who is seen as authentically holding African American values and
is a scientific expert by way of his training and standing in scientific communities. Her
discussion of Kittles foregrounded how authenticity and expertise make ancestry testing a viable
option for kin-making in African American communities, and how critiques of scientific racism
have shaped biological categories (e.g., the use of ethnicity instead of race) and scientific
practices of classification, creating new ways of constructing biological kinship.

In the final part of her talk, Nelson discussed how genetic technologies were being imbricated
into issues of racial slavery and cultural memory. In the case Farmer-Paellmann v. FleetBoston,
which sought reparations for descendants of slaves who were bought and sold by a private
corporation, genetic ancestry testing was used to constitute proof of slave ancestry. This
evidence did not prove substantive, however, because the court drew a distinction between
genetic and genealogical connection, arguing that the plaintiffs needed to prove the latter. The
other example raised by Nelson was the Leon H Sullivan Foundation, which has argued that
African Americans and Africans share a linked fate. In the context of genetic technologies they
have argued that African Americans should target their philanthropy to the groups they are
genetically connected to. These two cases offered examples of people enrolling genetic
technologies in their political initiatives, claiming kinship (to slaves and African communities)
that was otherwise unknown or denied to them with other kinds of evidence. Nelson ended on
these examples to bring us to her central question: “can science have progressive goals?” If
ancestry tests have been creating new kinds of kinship that can serve as a basis for forming
political identities, are there ways to develop these potentialities further and in different
directions?

Herman Gray, Professor of Sociology at UC Santa Cruz, acted as a respondent to Nelson’s talk.
He was curious about what relationships between individuals and collectives are made in the
practice of genetic ancestry tests: What kinds of imagined communities (Benedict Anderson) do
they create? How are these communities formed? And how do they foster a sense of belonging?
Gray wondered about authority and expertise in the cases laid out by Nelson: What is the
relationship between legitimization and expert knowledge? What is the nature of people’s claims
on experts? And how do people become implicated in state projects—in particular, neoliberal
ones that emphasize individual responsibility—in these configurations of science and expertise?
What kind of politics—if any—are possible in these sorts of state projects? Finally, drawing on
critical race theorist Saddiya Hartman, Gray asked what kinds of genealogical fantasies are
created through the practice of genetic ancestry testing. In Gray’s response, he expressed more
trepidation than Nelson about the political potentials of genetic testing. He felt that the desire for
ancestry testing in African American communities played into the forms of individualism
encouraged in American society and relied on outside expertise to make authoritative knowledge
claims.

In her response to Gray, Nelson emphasized that genetics is never only about the individual, but
is a basis for affiliation. She returned to Rick Kittles, whom she characterized as having a
special kind of post-Civil-Rights expertise. Nelson also took the opportunity to flesh out her
concept of “the social life of DNA,” which she defined as an analytic that understands that there
are different spheres with different stakes in genetic technologies, but they co-authorize one
another. She also emphasized that genetic ancestry testing is a kind of politics, if we are to
define politics as people trying to make change. In this way Nelson endeavored to take seriously
the political and scientific desires of the people she interviewed rather than explaining them
away as motivated by unconscious ideologies.

During the Q&A, Ed Green asked if African American consumers were satisfied with their test
results, because he did not feel he got useful ancestry information from his own genetic testing;
the time-scale was too large. Whitney Boesel followed up on this question later by asking about
the relationship between ancestry information and medical information; did people who wanted
ancestry tests also want medical information? Lisa Petrella was curious about what Nelson meant
by “progressive”--is it about political or scientific progress? Megan Moodie wondered what the
connections and disconnections between African Americans’ interest in ancestry tests and
Mormons’. Max Tabatchnik asked how African American communities understand the difference
between race and ethnicity in the context of Rick Kittles and the politics of these biological
categories in general. Continuing the theme of political possibilities, Jenny Reardon asked what
kind of stories produced something as politically “actionable” in this context. Pierre du Plasiss
and Herman Gray were curious about the difference between a politics of recognition and a
politics of representation. Through the audience questions and Alondra Nelson’s thoughtful
responses, questions of political and scientific categories, community and identity, authenticity
and expertise, arose in their specific relationships to violent histories (slavery and scientific
racism). Without answering the question “can science have progressive goals?” Nelson
presented a complex landscape where different communities have incorporated genetic
technologies into their practices of making community and telling histories. Staying true to the
political yearnings of her interview/ethnographic subject, while asking questions from critical
race theory and Science and Technology Studies, Nelson provided compelling ways to approach
the complexities of doing politics with and through emerging technologies.

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.”

Bia Labate, "Scientific Research on Ayahuasca and Health"
SJWG Rapporteur Report
31 January 2012
Rapporteur: Martha Kenney, History of Consciousness
Bia Labate, PhD Candiate in Social Anthropology at the University of Campinas, spoke to us
about the public debate and competing discourses around Ayahuasca, a psychoactive brew of two
plant extracts used around the world in shamanism, healing, sorcery, divination, warfare, and
hunting. Because one of the plants, psychotria viridis, contains the Schedule I narcotic DMT,
Ayahuasca (the bush, the extract from the bush, and the preparation) has been subjected to a
number of diverse regulations worldwide. Labate showed how these regulations are embedded
in different local and global discourses, producing new meanings and uses for Ayahuasca. In
Brazil it is allowed for ritual and religious use, though not therapeutic use. Whereas in Peru it is
considered the “traditional medicine of the indigenous people” and protected as cultural heritage.
In the U.S. the regulation of Ayahuasca created tensions between religious freedom and drug
laws; for the moment religious freedom has prevailed. While in France Ayahuasca was
connected to brainwashing by cults and sects, creating a total ban that includes not just the
extract but the bush as well. Through these examples, Labate showed how Ayahuasca became
entangled in discourses of religious liberty, traditional medicine, personal use, and religious
cults.

In the second half of her talk Labate discussed competing narratives of therapeutic vs. religious
use and harm vs. healing. She showed how these categories were difficult to define and took on
different contours based on national and cultural specificities. These categories raise important
and difficult questions: How do you define a religion? How do you insert traditional medicine
into a public health system? Is scientific legitimization the only route to prove therapeutic
properties? How can we define and police cultural authenticity? As different groups try to
answer these questions, Labate argues that there is a reciprocal appropriation of legal,
anthropological, biomedical discourses. For example, the anthropological category of
“ceremony” is taken up by shamans who prepare Ayahuasca. As a sacred ceremony rather than a
practice of everyday life, “the Ayahuasca ceremony” is something that can be marketed at panindigenous
festivals. Labate concluded her talk by arguing for the space of the social sciences in
this debate; she believes that if Ayahuasca is studied only in a biomedical framework that we lose
important insights into cross-pollination of discourses and identities that happens in this collision
of legal, biomedical, and religious categories.

In the Q&A members of the audience were interested in categories that betrayed the simple
equation of Ayahuasca with DMT. Andrew Matthews, drawing from his fieldwork on forestry in
Mexico, suggested that defining Ayahuasca as more than just the drug could be important for
these questions of regulation. Guillermo Delgado suggested that it was necessary to use specific
indigenous terms for Ayahuasca use rather than use anthropological or pan-indigenous terms like
“shamanism.” Martha Kenney asked if the term “sacred technology” that appeared in the
newsletter description of the talk was a useful term in Labate’s work. Craig Reinerman asked
about the value of the sociological categories of “set and setting” for understanding how “the
same drug” can have different effects in different cultures.

As Labate answered these and other questions, she provided a greater sense of the complexity of
Ayahuasca worlds. She explained, for example, how psychotria viridis was introduced to Hawaii
(and the crisis of regulation that ensued), how she tried to understanding Ayahuasca as inducing
the experience of “becoming plant,” how “shamanism” is a term that is embraced by many
indigenous Ayahuasca preparers, and how environmental regulations were taking the place of
drug regulations in some contexts. By illustrating the complexities involved in the global
understanding and regulation Ayahuasca, Labate illustrated how the skills of social scientists can
contribute to the ongoing dialogue.

Cells, Race and Stories: A Discussion with Priscilla Wald about Henrietta Lacks and the HeLa Cell Line

Priscilla Wald (Duke, English and the Center for Genome Ethics, Law and Policy)

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.

Priscilla Wald, "Cells, Race and Stories: A Discussion about Henrietta Lacks and the HeLa Cell Line"
SJWG Rapporteur Report
6 February 2012
Rapporteur: Martha Kenney, History of Consciousness
Priscilla Wald, Professor of English at Duke University, spoke to us about the ethical
implications of the Henrietta Lacks case, which has recently become widely known due to the
popularity of Rebecca Skloot’s book, The Immoral Life of Henrietta Lacks. Henrietta Lacks was
a black woman born in 1920 in Virginia, whose cancer cells were used to develop an immortal
cell line known as HeLa cells. Although these cells became important to biomedical research,
Lacks herself died of cancer on a segregated hospital ward in 1951. Neither Lacks nor her
family knew that the cells were taken from here nor did they profit from the HeLa cell line. This
case has become a touchstone for many people in thinking about bioethics in the 20th and 21st
centuries.

Wald argued that many of the stories about Lacks do not help us address key issues of science
and justice. For example, some stories center around medical wrongdoing; however, it is not
clear what the specific wrongdoing was or how it could have addressed. When accounts focus
on wrongdoing they often imply that Lacks should have been treated better because she had
“special cells.” According to Wald, these stories miss the role that institutionalized racial
inequality played in the Lacks case along with hundreds of thousands of other, less spectacular
cases.

Wald’s own approach to narrating the Henrietta Lacks is located in a tradition that focuses on
structural violence. Thinkers in this tradition map the differential effects of the power through
stratified populations, analyze the language through which these structures appear to be
unchangeable, highlight where we have the responsibility to change it, chart the continuing
abuses of structural inequality, and call for reparative measures in the present for violence of the
past. Wald wants to use this model of critique as a means to redress (which has flourished in
ethnic studies) as a model for understanding scientific change and biopolitics.

Wald believes we need to pay attention to what kinds of stories are being told about Lacks and
the HeLa cell line and think about how structural racism figures in these stories. Wald gave
examples of how, after the disclosure that the cell line was developed from Lacks’ tissue, that the
cells themselves became gendered, racialized and sexed. When it appeared that HeLa cells were
making their way into other cell lines and biological specimens in laboratories, negative
language was used to describe the situation. It was said that HeLa cells were “virulent” and
“ruined” other cell lines. Racial overtones were especially evident in a case where a white
baby’s cells were “contaminated” with HeLa cells and appearing biologically “black,” leading to
racist humor about sexual promiscuity and uncertain paternity. When HeLa cells showed up in
Russian cell lines, they were figured as out of control American agents, cellular Mata Haris.
Wald argued that these racialized stories are taking the focus off of real-world solutions to
biomedical disparity. For example, talking about the Lacks case in terms of “bioslavery,”
spectacularly summoned the past to conjure a dystopian future where our tissues were no longer
our own property. According to Wald these kind of stories deflect attention from how historical
racism is still at work in the present. She argued that we should be having a better debate about
the healthcare system rather than entertaining anxieties about a sci-fi future. Wald concluded by
arguing that we should pay attention to institutional racisms and structural violence and endeavor
to turn critique into change. We need better stories that combine this kind of critique with a
belief in new possibilities.

During the discussion audience members were interested in what Wald meant by stories and
what it means to intervene at the level of the story. Sandra Harvey, who was struck by the pain
of Lacks’ family in Skloot’s book, asked how scientists could understand their pain as a way into
the justice questions. Jake Metcalf wondered if scientists have particular justice obligations in
biomedical matters. Donna Haraway argued that scientists are more responsible because
knowledge carries obligations and stories are important because they evoke the ability to care in
thicker ways. One biologist wondered what the “take home message” of the talk was and what
he was capable of doing to promote social justice. Martha Kenney affirmed her belief in
storytelling, but wondered what other caring practices scientists and others could do alongside
telling good stories. The discussion foregrounded the complex relationship between stories,
science, and biomedical justice.

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.