Trust in Genomics: A challenge for scientists and ethicists alike

Access to data and the quality of data depend partially on the quality of trust between physicians, researchers and many different patients.  When trust breaks down, patients and research subjects may request that their samples be withdrawn, or they may not provide samples and data in the first place. Technological developments that enable biomedical institutions to bank vast quantities of tissues and data today introduce new challenges to this critical project of creating and maintaining trust.  Any tissue now given for research or routine medical care technically could be used for an indefinite amount of time for entirely unforeseen purposes. In such a situation, it is hard to say that anyone understands what they are consenting to, even the researchers and physicians collecting samples and running trials.  Under these conditions, trust based in mutual understanding faces new challenges.

How to address these novel challenges will be at the center of the Science & Justice Working Group meeting on April 16, 2014, “Trust in Genomics: A Problem of Knowledge and Ethics”, 4:00-6:00PM in Engineering 2 599 on the UCSC campus. In this discussion, respected medical geneticist Wylie Burke (University Washington) and cultural anthropologist and bioethicist Barbara Koenig (UCSF) will share their experiences working with biobanks, researchers and patients to build better data sets by attending to matters of trust and respect.

Dr. Barbara Koenig, professor of medical anthropology and bioethics in the UCSF School of Nursing, is the co-Director of a newly launched research institute at UCSF dedicated to understanding the ethical, legal and social implications of translational medical genomics, The Center for Transdisciplinary ELSI Research in Translational Genomics (CT2G). By bringing together a broad, multidisciplinary range of expertise, CT2G is endeavoring to ask, and answer, questions about how genomic information will be used in a manner that benefits researchers, patients and broader publics. “A decade after the human genome was fully mapped,” Koenig argues, “figuring out how to translate genomic findings into prevention and clinical care has become a public health priority.”

Dr. Wylie Burke, Professor of Bioethics and Humanities at the University of Washington and Principal Investigator of the University of Washington Center for Genomics and Healthcare Equality, co-authored an article in Science (Trinidad et al., 2011) that highlighted the potential benefits of approaching consent (and re-consent) as an opportunity to engage with donors beyond legal formalities. She and her co-authors examine the downstream consequences of not thoroughly consenting donors for the use of their biological materials and data. Drawing on cases that have appeared in the headlines, such as the sequencing of the HeLa cell line, they examine the wide range of opinions about how best to protect patient privacy and dignity in an age when even experts cannot anticipate how biological samples might be used in the near future. In the article, they propose that “researchers and IRBs consider how the informed consent process could be used to foster respectful engagement, rather than merely mitigate risk.”

This discussion is the second in a series of discussions that the SJRC is hosting on Data Justice (see Science and Justice in an Age of Big Data: A Conversation with Peter Yu and David Haussler for a description of the first meeting held on January 22, 2014).  The meeting is co-sponsored by the Department of Molecular, Cellular, and Developmental Biology, the Center for Biomolecular Sciences and Engineering, and the GENECATS and CANCERCATS research groups.

April 16, 2014 | Engineering 2 Room 599    


"Trust in Genomics: A challenge for scientists and ethicists alike"

SJWG Rapporteur Report

16 April 2014

Rapporteur Report by Lizzy Hare

This event was the second in a series of discussions that the Science & Justice Research

Center is hosting on Data Justice. This working group meeting brought medical geneticist Wylie

Burke (University of Washington) and cultural anthropologist and bioethicist Barbara Koenig

(University of California San Francisco) into conversation with Science & Justice Center

Director Jenny Reardon and David Haussler (Director of the UCSC Center for Biomolecular

Science and Engineering). Drs. Burke and Koenig shared their experiences working with

biobanks, researchers and patients to build better data sets by attending to matters of trust and

respect. Matters of trust were central to the first Working Group meeting on Data Justice that

was held in January of 2014. The goal of this meeting was to extend that conversation and

explore those issues more fully.

Jenny Reardon’s introduction provided an overview of some of the concerns that the

Working Group hoped to pursue with the Data Justice series and this event in particular.

Wylie Burke started the discussion by talking about the University of Washington’s

(UW) “biotrust” efforts. They are seeking to collect clinical samples and health information as

patients receive care at affiliated institutions. UW consulted with ethicists during the

development of this biobank and the result was an opt-in process rather than the opt-out format

that most institutions use. In order to explain how UW’s biotrust efforts are distinct from others,

she explained the case of a five site research consortia that was seeking to understand to what

extent data in electronic records could determine phenotypes for genetic research. Once the

research was completed, the funder required that the health and genomic data be sent to a central

repository. UW was the only one of the five sites where the Institutional Review Board (IRB)

required that they seek additional consent from patients, arguing that sending information to a

federal repository was of a different order of magnitude the research that had been specified in

the original consent forms. Burke and her colleagues were able to gain extra funds to survey

people about how they felt about the reconsent, and overwhelmingly they wanted to be asked and

did not see it as a nuisance.

Barbara Koenig wanted to turn the conversation away from trust and towards

trustworthiness, which places the onus on the institution to be worthy of the trust of patients and

the community. While working at the Mayo clinic, Koenig was a part of the same research

consortia as Burke. The Mayo clinic had used a 3-way checkbox consent form that had been

considered sufficient by the IRB, but the clinic ultimately decided that the form was insufficient.

The clinic took the issue to their community advisory board, and that board decided that it was

acceptable notify patients and allow them to opt out rather than go through the process of

reconsent. Koenig referred to the act of consulting with a community advisory board as

“deliberative community engagement”, and the strategies are based on deliberative democracy.

The goal is to bring individuals who represent the community together to discuss data

governance. This method will not replace informed consent, but will enrich it, because consent

alone might not be sufficient to deal with future obligations and findings.

David Haussler joined the conversation and voiced his concern with establishing trust for

large, global alliances through local efforts like those that Koenig and Burke had discussed.

Haussler believes that large data sets collected through international collaborations are necessary

for understanding complex problems such as cancer and inherited diseases. He was excited by

the conversation at this meeting because he’s been working as a part of the Global Alliance (an

international effort to share genomic data) and they have been having a tremendous issue with

establishing trustworthiness. Burke and Koenig reiterated that trust needs to start locally, and

that local procedures need to cover rules about access to data, even if that information will be

used as a part of a global research effort.

The central issue seems to be a lack of agreement on how much data could be shared, and

where that information would be stored. Restricting access might make the process and the

institutions involved more trustworthy for community members and patients, but restricting

access prevents creativity and potentially groundbreaking uses, as well as raising concerns about

who is able to determine access to the information. Jenny mentioned the adage “information

wants to be free”, but our worlds have borders and those borders allow us to make decisions

about which values count in a particular place. Jake Metcalf reminded us that there is a second

part to this famous adage, and that is that information wants to be free, but it also wants to be

expensive. In our quickness to speak of information as something that has a will and desires to

freedom, we tend to ignore the infrastructures that are required to share that information and to

allow its use.

Cocktail Hour: Allen Thompson “Inter-generational Justice and Issues in Ecosystem Management”

Intergenerational Justice and Issues in Ecosystem Management

Pervasive and in some cases irreversible environmental change is putting great pressure on normative thinking in the fields of ecosystem management, including conservation and restoration ecology. In this talk I will present an argument based on obligations to future generations to justify decisions about allocating limited resources in the practice of ecological restoration, or under conditions of what we might call “restoration triage.” Thompson will discuss a growing field of ecological thought that concerns the increasing emergence of non-analog or “novel” ecosystems and the subsequent need to develop an “intervention” ecology to supplement historic management principles of non-intervention, arguing that an intervention ecology will be required to achieve our preservation and conservation goals in a new world of rapidly changing ecologies.

Allen Thompson is an Associate Professor of Philosophy in the School of History, Philosophy & Religion at Oregon State University. His research includes Environmental Philosophy, Philosophical Ethics, Social and Political Philosophy, Practical Reason

Tuesday February 18, 2014  |  4:00-6:00pm | Science & Justice Common Room, Oakes 231


WiSE Winter Luncheon: Addressing Gender Bias in the Sciences

WiSE Winter Luncheon:
Addressing Gender Bias in the Sciences

When: Thursday, Feb. 6, 2014, 12pm – 2pm
Where: Alumni Room at the University Center (map)
Who: You! All education levels and genders welcome
FREE buffet lunch provided, but only for those who RSVP by Tuesday, Jan. 28

Jenny Reardon, Director of the Science & Justice Research Center, UCSC

Karen Barad, Professor of Feminist Studies, UCSC
Nancy Heischman, Director of Campus Conflict Resolution Services, UCSC
Campbell Leaper, Professor of Psychology, UCSC
Enrico Ramirez-Ruiz, Professor of Astronomy, UCSC

By popular demand, the Women in Science and Engineering (WiSE) group is hosting a luncheon on gender bias in the sciences. Have you ever wondered how to recognize and/or deal with gender bias in STEM careers? Have you known people who have been biased against, but are unsure of how to help them? Are you afraid that you yourself might be biased? Are you interested in the status of women in STEM fields? If you said yes to any of these questions, this luncheon is for you!

The luncheon will feature brief speeches by each of the panelists on their opinions on gender bias in the sciences, followed by a discussion moderated by Jenny Reardon. Afterwards, we will have a Q&A session for audience members to participate in! If you have questions/topics that you would like the panelists to discuss at the luncheon, you may submit them anonymously via this form.

Undergraduates, graduate students, postdocs, and faculty of all genders are welcome. However, space is limited, so please fill out this RSVP form by Tuesday, January 28th.

Please contact Kim ( with any questions regarding this event.

Science and Justice in an Age of Big Data: Biomedical Privacy & Genomic Openness

Peter Yu, David Haussler and Jenny Reardon Discuss the Meeting of Biomedical Privacy and Genomic Openness

On January 22, 2014, the Science & Justice Working Group is hosting the first in a series of ongoing conversations about the unresolved issues raised by the recent push to expand efforts to collect and aggregate biological samples and data.  Jenny Reardon (Science & Justice Research Center Director and Associate Professor of Sociology) will facilitate a conversation between Peter Yu (incoming President of the American Society of Clinical Oncology and Director of Cancer Research (ASCO) at the Palo Alto Medical Foundation) and David Haussler (Director of the UCSC Center for Biomolecular Sciences and Engineering).  Peter Yu is a renowned medical oncologist and hematologist who has pioneered the advance of health information technology and its use to improve medical care.  The American Society of Clinical Oncology is the world’s leading professional organization representing physicians who care for people with cancer, and has played a lead role in erasing the stigma around cancer through developing and sharing knowledge that promotes cancer prevention and treatment.  In March of this year ASCO announced CancerLinQ, a major effort to collect data on hundreds of thousands of cancer patients to further advance cancer research and treatments. David Haussler is a pioneer in the field of bioinformatics whose group assembled and posted the first working draft of the human genome on the Internet, and is now innovating computer algorithms that will enable the use genomic data in the transformation of cancer care. In June of this year, Haussler and his colleagues announced a “Global Alliance” to foster the sharing of genomic and clinical data that CancerLinQ and other similar efforts require.  Yu and Haussler will discuss the challenges and opportunities raised by efforts to harness big data approaches to biomedical research.

As both Yu and Haussler are keenly aware, aggregating patient tissues and data raises entangled ethical and technical concerns. Finding the proper balance between personal privacy, medical and scientific autonomy, and equitable public benefits is at the heart of multiple recent controversies, including the sequencing and subsequent publication of Henrietta Lacks’ genome and neonatal blood biobanking.  These episodes make clear that the ability of informatic technologies to broaden and deepen the analysis of personal data raises issues that go to the heart of democratic governance. As a society, we have long associated personal control over our own bodies and privacy with full citizenship. Yet we also highly value transparency and knowledge sharing and view both as critical aspects of an open society, and as necessary components of scientific progress.  Today, as aggregated biomedical data become both more useful and more risky, we confront a difficult conflict between the value of privacy and the value of openness.

In an age of widespread social media usage, it is an increasingly familiar task to balance these values in our daily lives. Yet Science & Justice Research Center Director Jenny Reardon recently experienced this tension between privacy and openness in a surprising new way when she had an appointment with a physician at UC San Francisco (UCSF) and was asked to sign a UCSF Terms of Service Form.  That form told her that she “understood” that UCSF could use her tissues and/or medical data in research and that she had no property rights in these tissues/data. Despite being an expert in biomedicine, ethics and society, she found that she did not know what she was being told she “understood” in order that she might receive the medical services of UCSF. Reardon reflected on this experience in an article entitled “Should patients understand that they are research subjects?” that appeared on March 2, 2013 as the cover story for the San Francisco Chronicles Sunday Magazine Insight. This article circulated widely, and resulted in Yu contacting Reardon, establishing an ongoing conversation about the future of medical privacy, trust, and informatics.

At the heart of problem is a confusing mix of U.S. case law that denies ownership over one’s bodily tissues once they have left one’s body, medical privacy standards that require providers and researchers to inform you that they may use the tissues for research without directly requesting permission, and the speed at which medical advances are occurring. Given these conditions, it is more difficult than ever to know what one is agreeing to when one signs ubiquitous Terms of Service and informed consent forms.

The San Francisco Chronicle editorial board published an editorial along with Reardons article that suggested that the US Department of Health and Human Services revise its standards for medical consent. The editors proposed that the HHS standards foster full disclosure and clear communication with patients that more fully addressed questions of who will own and benefit from the collection and distribution of tissues and data.  They also published a response from UCSF’s Elizabeth A. Boyd, associate vice chancellor for ethics and compliance, and Daniel Dohan, associate professor of health policy and social medicine. Boyd and Dohan argued that the success of personalized medicine rests on relationships of trust between physicians, researchers and patients. They noted that UCSF supports revising consent standards, and cite the recent creation of EngageUC, an initiative on the part of UC physicians and faculty to develop new comprehensive guidelines.

Within a few weeks of this discussion in the San Francisco Chronicle, The New York Times published an Op-Ed by Rebecca Skloot (author of bestselling book The Immortal Life of Henrietta Lacks) that called for the development of international standards to protect the privacy of genetic data.  This call followed in the wake of the sequencing and publication of the HeLa cell line genome without the consent of the family of Henrietta Lacks, the African American woman whose cells were used to make the cell lines (again, without her consent). The New York Times followed with an article a few weeks later that discussed the concerns of Senator John D. Rockefeller IV, Chair of the Senate Commerce, Science and Transportation Committee, about patient privacy and the lack of transparency on who has access to patient health data. More recently the NIH’s chief Francis Collins personally worked with Lacks' family to develop a protocol for accessing the HeLa genome data that aimed to balance researchers’ needs with the family’s desire for privacy.

This discomfort bubbling up on the national stage has led to calls to change the Common Rule (the set of laws that govern federally-funded biomedical research in the U.S.), which currently allows for collection of tissues and data from patients as long as anonymity is maintained. It has become clear that anonymity in an age of openness is at best an uncertain policy instrument.  In addition to its technical limits, anonymity does not address the underlying concerns about who will be served by the mining of genomic and health data, and how concerns about privacy, property and justice can be addressed while fostering the creation of new knowledge needed to advance medical care.  Both Yu and Haussler are leading efforts that seek to do a better job fostering innovative research while attending to these fundamental ethical and policy issues, knowing that we need to do both if we are to advance cancer research and care.

The conversation between Peter Yu and David Haussler, facilitated by Jenny Reardon, will be the first of several dialogues planned by the Science & Justice Research Center that aim to help clarify these issues at stake in the evolving relationship between openness and privacy in the biomedical sciences.

Wednesday January 22, 2014 |4:00-6:00PM | Engineering 2, Room  599

"Science & Justice in the age of Big Data: A Conversation between Peter Yu and David Haussler"
SJWG Rapporteur Report
22 January 2014
Rapporteur Report by Lizzy Hare
This event was the first in a series of events on justice in an era of big data, one of the
Center’s themes for the year. The working group meeting was a conversation between Peter Yu
(incoming President of the American Society of Clinical Oncology and Director of Cancer
Research at the Palo Alto Medical Foundation) and David Haussler (Director of the UCSC
Center for Biomolecular Science and Engineering) about genome data and the future of cancer
research. Julie Harris (Assistant Adjunct Professor at UCSF, Institute on Health and Aging;
Staff Scientist at Kaiser Permanente Division of Research; and Associate Director of the Center
for Translational Genomics and Ethics) provided commentary. Science & Justice Center
Director Jenny Reardon moderated the conversation and introduced the panelists.

Reardon’s introduction provided an overview of some of the concerns that the working
group hopes to pursue with this series. Genome research is seen as powerful, and cancer
research can now studies the genomic changes that occur during the development of cancer. The
techniques that were developed in Haussler’s lab to understand the human genome are now being
used to think about cancer and evolution. This kind of genomic research would benefit greatly
from additional data that could be collected from cancer patients, but doing so raises ethical,
epistemological, and infrastructural questions. As a society, we have yet to figure out what to do
with big data. At present we mostly collect data of unknown significance, but there is no clear
precedent for who governs it, how to store it, or how to make sense of it. Who pays to store it?
Who gets to work with it and try to make sense of it? As the first of many working group
meetings to discuss this issue, the goal for this meeting was to outline which of these questions
needs further discussion.

Peter Yu spoke first, speaking from the perspective of a doctor practicing clinical
oncology. He described the efforts of the American Society of Clinical Oncology (ASCO) to
accelerate learning and analysis through computerized health care. They envision a rapid
learning system model, which would allow clinicians to generate new data and better models
while treating patients, by incorporating data from clinical practice instead of just clinical trials.
Such a system would require that patients and doctors be willing to share data, and it presents
problems for managing data, such as standardizing it and safeguarding it in a centralized
repository. The organization is still in the process of funding these efforts, but they are trying to
address these ethical and epistemological questions before they arise.

David Haussler followed up by first thanking Yu for his organization’s efforts, which he
sees as a tremendous boon to cancer care. Speaking from the point of view of a data scientist,
Haussler argues that big data is absolutely necessary for cancer research. Most mutations are
insignificant and very few are meaningful, so in order to establish a clear understanding of the
drivers of cancer, there needs to be a large number of genomes available to work with. These
numbers are unobtainable in the current system of clinical trials and academic research, but they
would be accessible if information could be captured from clinical practice. Haussler is hoping
that under Yu’s guidance the ASCO will be able to incorporate data collection into medical
practice. Yu agreed, saying that he believed the “holy grail” for cancer research would be a
healthcare system that engages people in research without sacrificing their rights.

Julie Harris provided her comments at this point, reminding us that the strong division
between research and clinical practice was established as a response to the Belmont report. At
the time the ability to distinguish between the two was useful, but times have changed. Big data
has brought new challenges, but a lack of community involvement in research continues to be a
concern. With Kaiser, she has been involved in a project to build a biorepository that members
can volunteer to donate samples to. The samples are linked to clinical records and environmental
databases so that they may be used to research gene-environment interactions. This project has
been successful so far. Harris attributes at least part of the success to a community advisory
panel that brings together diverse representatives of the public. According to Harris, many of the
participants don’t fully understand the program but trust Kaiser to use the information in a way
that may benefit them someday.

Trust was a primary concern during the question and answer session. Some audience
members were concerned that storage for big data is not secure; that that the information could
be accessed by governments or individuals with malicious intent. This is especially problematic
when the information could easily be de-identified using phenotypic information. Yu mentioned
that there had been a study on establishing and maintaining trust around research samples, and
that most people were more concerned with what the information was used for than who was
using it. This is troublesome for two reasons, one, because it is difficult to anticipate what the
information might be used for in the future, and two, it is not always clear who the “who” is that
might eventually use the data, as institutions are increasingly amorphous. Researchers often try
to maintain trust by assuring donors that the samples will be used for good, but the notion of
good is itself abstract and a part of the question of justice that the working group will continue to
explore at future events.

Human / Non-Human Collaboration Across the Arts & Sciences

Justice in a More than Human World - Collaboration or exploitation? Working with living systems across the arts and sciences

Wednesday February 26, 2014

Digital Arts and New Media (DARC) Room 108

As artists and scientists explore non-human relationships and discover new ways to illustrate and inspire each other’s work, issues of collaboration, ethics, empathy and justice collide as these borders are crossed and new hybrid relationships emerge. This event will feature presentations of artwork and scientific research that cross pollinate each other, with a focus on human / nonhuman collaboration in the worlds of eco art, bio art, genetic engineering, molecular and marine biology.

Hosts: Gene A. Felice II & Sophia Magnone
Visiting Artist: Amy Youngs (
Presenters: UCSC Emeritus Faculty Helen and Newton Harrison

Co-Sponsored by: Digital Arts & New Media, Open Lab and UCIRA

Thursday February 27, 2014
Digital Arts and New Media (DARC) Room 204

The Digital Arts Research Center at UCSC will not only host the lecture / forum but will also host an undergraduate and graduate student workshop with Amy Youngs. This workshop will focus on bioart themes and will range from an artist presentation to group and one-on-one project / critique time between the artist and participants.

Host: Gene A. Felice II
Visiting Artist: Amy Youngs

Friday February 28, 2014
Engineering 2 Room 599
"Bioengineering and Meat Cultures"

Meat grown in a laboratory is being promoted as a response to the harmful effects of “conventional” factory-farmed meat production. Artists and scholars have identified how meat cultures are a new class of being, with their own unique characteristics. Some of these characteristics are precisely what makes lab-grown meat appealing as a food source, and some provoke what is frequently deemed “the yuck factor.” Viewing this new class of beings, along with other bioengineered critters, as custom-built collaborators, we explore the ways humans relate to and intervene in the more-than-human world to feed, clothe, house, and entertain themselves--and the way we respond when these interventions, collaborations, and cultures turn sour.

Hosts: Andy Murray and Sophia Magnone
Visiting Scholar and Artist: Oron Catts (

Oron Catts is an artist, researcher and curator whose pioneering work with the Tissue Culture and Art Project which he established in 1996 in collaboration with Ionat Zurr, is considered a leading biological art project.  He is the founding director of SymbioticA, (which he co-founded in 2000) an artistic research centre housed within the School of Anatomy, Physiology and Human Biology, The University of Western Australia.

Under Catts’ leadership SymbioticA has gone on to win the Prix Ars Electronica Golden Nica in Hybrid Art (2007) the WA Premier Science Award (2008) and became a Centre for Excellence in 2008. In 2009 Catts was recognized by Thames & Hudson’s “60 Innovators Shaping our Creative Future” book in the category “Beyond Design”, and by Icon Magazine (UK) as one of the top 20 Designers, “making the future and transforming the way we work”. His work has been widely exhibited internationally in venues such as NY MoMA, Mori Art Museum, Tokyo and National Art Museum of China.

Catts was a Research Fellow in Harvard Medical School, a visiting Scholar at the Department of Art and Art History, Stanford University, a Visiting Professor of Design Interaction, Royal College of Arts, London, and a Visiting Professor at the School of Art, Design and Architecture, Aalto University, Helsinki where he was commissioned to set up Biofilia - Base for Biological Art and Design. Catts’ ideas and projects reach beyond the confines of art; his work is often cited as inspiration to diverse areas such as new materials, textiles, design, architecture, ethics, fiction, and food.

A UCSC campus news article on the event appears here.

Helen and Newton Harrison, Amy Youngs, "Human/Nonhuman Collaboration across the Arts and Sciences"
SJWG Rapporteur Report
26 February 2014
Rapporteur Report by Sophia Magnone
This event was framed as part of a series of events, “Justice in a More-Than-Human
World,” that aimed to explore various modes of humans working with nonhumans, and to
articulate the possibilities for collaboration, rather than exploitation, in these working
relationships. The series had four core questions:

1) When it comes to human-nonhuman partnerships, how could we distinguish between
collaboration and exploitation?
2) How does thinking of nonhumans as collaborators refigure ethics, empathy, and
justice in these relationships?
3) How is nonhuman life valued? What systems of value enable us to manipulate and
end nonhuman life?
4) How do we imagine nonhuman values?
For this particular event, a panel of eco- and bio-artists discussed examples of their work that
stage interaction between humans and nonhumans, as well as between the disciplines of art and

Helen and Newton Harrison, Emeritus Faculty in the UCSC Art Department, presented
work from across their careers in which the artists enter into collaboration with living systems in
various ways: for instance, with crab populations in Sri Lankan lagoons (“The Lagoon Cycle”),
and with the ecosystem of the Tibetan Plateau (“Tibet is the High Ground”). They emphasized
the interdisciplinary nature of their eco-art work, which necessarily involves methods, techniques,
and theoretical frameworks of experimental science as well as of art. In their presentation, the
Harrisons modeled the collaborative nature of their own (working and personal) partnership,
which is based on ongoing negotiation and productive interruption.

Amy Youngs, Associate Professor of Art at Ohio State University, presented several
projects that involve messy, playful collaborations between humans, animals, plants, and
machines. She emphasized that “collaborations are not equal”: although her work is concerned
with taking animals’ worlds and interests seriously and making them visible for human viewers,
she does not pretend to create egalitarian situations for the animals in her work. She discussed
the institutional limits that are placed upon the artistic use of animals: an art project that involves
animal death is not considered institutionally acceptable. Her Farm Fountain, an indoor
ecosystem that grows edible and ornamental fish and plants through symbiosis, is thus conceived
as a private, do-it-yourself project (she provides instructions on her website); she discussed the
difficulty but the necessity of killing the fish, and also pleasure of cooking and eating the fish.
She also spoke of the particular interest that people take in her work involving live animals in
gallery spaces—for example, crickets (“The Museum for Insects”) and a rabbit (“River
Construct”). These exhibitions prompt viewers to focus on animals they might normally
overlook, and to be concerned about them as living beings.

In the Q&A session, multiple audience members responded with personal stories about
their own relationship to animals and to the practice of killing and eating animals. Jenny Reardon
asked, how do we bring the context of animal killing, and its ethical implications, into the
artwork itself? There was a sustained dialogue between audience members and speakers about
different narratives of (personal and industrial) animal killing: one can view animal killing as a
pragmatic necessity, a spiritual task, a way of accepting responsibility for the death one causes,
an unavoidable evil that should remain invisible, an avoidable evil that one can choose to reduce,

We also heard from several audience members about the particular relationships of care
and love they have entered into with animals, particularly rabbits. Jenny Reardon asked Amy
about her shift from rabbit breeding (which involves “culling”) as a child to her interspecies
artwork; for Amy, the link is that she loves to be around animals and wants to figure out how to
do that well and to engage public conversation on interspecies being. The Harrisons discussed
the ways that crabs manifested “personality” and “civil society” in their “Lagoon Cycle” project.

In response to Amy Youngs’ story of the institutional limits placed on her artwork,
Donna Haraway noted the bigger implications of the institutional distinction between science and
art, which have different status as knowledge-making practices. In the current system, science
has the authority to kill, while art does not—a gendered division of “serious” versus “unserious”
kinds of work. Collaboration with nonhumans might involve making die as well as making live,
as a challenge to the social authority of science and war as the only players allowed to make
decisions about animal life and death. Newton Harrison suggested that in his own art practice, he
has found that these institutional obstacles of social authority can indeed be overcome. Donna
Haraway also noted the differences in scale in the art practices being presented: the Harrisons
tend to work on a large, continental scale, while Amy Youngs tends to work on an intimate,
miniature scale; the two models present us with micro and macro worlds of the imagination.

Investigative Justice

SJRC Visiting Scholar Sally Lehrman (Knight Ridder/Mercury News Professor in Journalism and the Public Interest, Santa Clara University), speaks about what constitutes responsible practices of investigation in journalism, and what might we learn from and with journalism about the challenges of constituting responsible practices of investigation in science?

Sally Lehrman, an award winning journalist and our first Science and Justice Professor, will speak to us about how questions of responsibility in investigative journalism relate to questions of responsibility in science. We look forward to thinking with Sally about how to create more responsible science reporting, particularly in the area of race, gender and genomics. We will ask what these efforts in journalism might reveal about efforts to create more responsible natural and social sciences. While many people think of journalists as distorting responsible science, Sally's work will challenge us to think in a more nuanced way about the relationship between science and journalism, and about how public knowledge about science is produced.

Sally Lehrman, "Investigative Justice"
SJWG Rapporteur Report
13 November 2013
Rapporteur Report by Lizzy Hare
Sally Lehrman, an award winning journalist and the first Science and Justice Professor, spoke to the working group about responsibility in investigative journalism and how it relates to questions of responsibility in science. Lehrman is especially interested in matters of justice and diversity in journalism and science, and wants to work with Science and Justice to think about how science, and journalism can intersect towards the idea of justice.

Lehrman began her presentation with a video of a white supremacist whose DNA ancestry is revealed to him on a British talk show. The test results show that he is 14% sub-Saharan African, and he rebukes, claiming that this is simply statistical noise. Lehrman wanted to show this video because it raises questions about what genomics does, and by extension, what science can do. She then asked us to think about the following questions: Can science solve social problems? Can journalism assist? Should it? How well is it doing? Could it be done better?

Lehrman then gave a brief overview of the ambitions of journalism and some of its historical problems. In some ways, these ambitions and problems are shared with the field of science. Journalists see their duty as informing the public and providing the public with information so that the public may address the issue. The information provided to the public should be truthful, fair, and comprehensive. These ambitions are not always easy to obtain. Journalism as a field is disproportionately white and male, and both journalistic sources and the subjects of coverage reflect racial and gender bias as well. The underrepresentation of groups in the newsroom and as sources and subjects can lead to stereotyping.

According to Lehrman, journalism’s goal is to seek truth and report it. The trouble with science reporting is that because many journalists see scientists as holding the truth, and because scientists typically agree, journalists think that they can take a shortcut when reporting on science. This leads to science being presented as if it holds the solution to social woes without further discussion or debates about how society should use that information. Lehrman suggests that science writers need to be attentive to their own social conditioning and the structures within their field that shape the way they conduct their investigations. Just like with other types of reporting, science journalists need to remember to question the newsworthiness, usefulness, credibility, and framing of scientific stories. Practically speaking, her proposed intervention can be summed up as “question the questions and question the interpretations.”

The final slide in the presentation was an image that she hoped we could discuss. It is from an exhibit on genomics, and she is hoping that our expertise and interest in matters of science and justice could provide useful thoughts on the image. The image shows a female mannequin-like figure with genetic code imprinted on her. She’s dark brown, and lacks facial features and hair. The question next to her reads: “Can genes tell us who we are?” We discussed this image in small groups and then convened to share our thoughts. The working group thought that the image was supposed to seem futuristic, which prompted additional comments about why future people are so often portrayed as hairless
and of indeterminate ancestry and culture (depicted here with light brown skin tone and without hair or clothing to provide clues). Others were troubled by the use of a female body. Was this a conscious attempt not to reproduce the gender bias in medical research? Or does it perpetuate the female body as an object for the scientific male gaze? Or was it because the female form is considered more approachable in our culture?

After the discussion of the image, audience members shared their responses to and questions for the presentation. One person commented that perhaps there should be more burden of responsibility on the informant to help get the story right. Lehrman’s response to this was that typically the journalist has a better understanding of the general audience than the scientist does. That said, she takes serious issue with journalists who write directly from press releases, which are intentionally sensational and might gloss over important points in the research. Working from press releases also adds in the trouble of time, because the turn around time between press release and publication is so short that investigations become truncated and dots aren’t connected. Heidi asked about the problem of “balance as bias” which is especially problematic in reports on climate change, which often grossly over represent the position of skeptics. Lehrman suggests that scientists can be helpful to journalists by pointing out where the debates actually lie within the field. These debates are likely to be much less sensational, but will more accurately reflect the status of mainstream science.

Workshop: Transacademics: Making Use of Interdisciplinary Research Methods Outside of the Academy

Third Meeting of the Bay Area Intercampus Workshop on Interdisciplinarity

This workshop will consider how interdisciplinary research methods and knowledges can be used outside of specialized academic venues, with a particular focus on the importance of collaboration. Scholars who are drawn to interdisciplinary inquiry are often in search of knowledge that has more purchase on ‘real world’ problems. We will discuss how to accomplish this from positions that are both inside and outside of the traditional university setting, sharing insights from our own work, our institutions, and from experts who are now applying interdisciplinary training outside of the university.

Attendees are encouraged to prepare a 5 minute Lightning Talk that very briefly describes their research project and shares an insight, challenge or question about interdisciplinary collaboration that has arisen from their experience. Lightning talks are allowed a maximum of 3 slides. Attendees who do not want to give a lightning presentation are also welcome for the entire day.



10:30-11:00 Gather

11:00-11:15 Opening Remarks and brief introduction to the Science & Justice Research Center (Reardon and Metcalf)

11:15-12:45 Guest Speakers:

Natalie Purcell (Director of Collaborative Patient Care, Veterans Administration in San Francisco)

Karen Andrade (Department of Environmental Science, Policy and Management and The Science Shop, UC Berkeley)

12:45-1:15 Lunch

1:15-2:00 Optional walk and chat (dress for walking on moderate hills)

2:00-3:45 Lightning Talks

4:15-4:30 Break

4:30-5:00 Open Discussion

The UCSC Science & Justice Research Center | UCSC, College 8, Room 301 | Saturday, November 2, 2013

"Transacademics: Making Use of Interdisciplinary Research Methods Outside of the Academy"
Third Meeting of the Bay Area Intercampus Workshop on Interdisciplinarity
SJWG Rapporteur Report
2 November 2013
Rapporteur: Lizzy Hare, Anthropology
The goal for this workshop was to consider how interdisciplinary research methods and collaborations can be used outside of academic venues. Natalie Purcell, Director of Collaborative Patient Care at the Veterans Administration in San Francisco, CA and Karen Andrade, founder of the Berkeley Science Shop and Ph.D. candidate in UC Berkeley’s Department of Environmental Science, Policy and Management, spoke about their experiences applying interdisciplinary training to their work outside of the university. Workshop attendees also gave 5-minute Lightning Talks to briefly describe their research and share an insight, question, or challenge from their own experience in interdisciplinary collaboration.

The workshop began with introductions and participants offered questions that they hoped would be addressed over the course of the day. Workshop attendees were concerned with making transacademic work that is research done outside of traditional academic settings, legible as valid contributions to research and in career development, with issues of translation across audiences, disciplines and different degrees of specialization and expertise. There was also significant interest in being involved in research that can address real world problems and help to build a more equitable and just world.

In her introduction, Jenny Reardon talked about the importance of institutional recognition and support. Quality work ought to be recognized both financially and through certification on transcripts, and this is something that requires the involvement of the university. Funding for the Center for Science and Justice, for example, initially came from the National Science Foundation, but the NSF supports research, not institutions. In order to receive additional funds from the NSF that money will need to go towards research that supports the institution.

Natalie Purcell talked about her experience at the Veterans Administration in San Francisco. She began working at the VA through a fellowship program and was surprised to find that she would not be working on sociological research, but instead was tasked with administrative duties. While this was frustrating at first, she realized that many who leave academia face similar challenges and that the assigned tasks provided an opportunity to apply education in unexpected ways. One of the examples Purcell used was the customer service classes that she was asked to lead. She was able to incorporate sociological principles by expressing them using in the language of the people in charge. She said that her graduate training fostered a suspicion of pragmatism, and a distrust of people who work within compromised institutions and frameworks, but that these expectations weren’t realistic in her current position. She cautioned that adhering to a sense of purity in one’s research simply displaces the problem and forces others to compromise.

Karen Andrade spoke about developing the Berkeley Science Shop, an organization that connects UC Berkeley graduate and undergraduate students with research projects that benefit local non-profits, businesses and governments. By connecting students who wish to do research and organizations that could benefit from scientific research, the organization hopes to foster innovative solutions for local social and environmental problems. The Science Shop connects undergraduate students with graduate research mentors, and allows them to engage in research that has real-world impacts.

In the afternoon, conference attendees gave brief “lightning talks” about their experiences working collaboratively both inside and outside the academy. More than one talk questioned the assumption that collaboration is inherently good. Attendees were concerned that collaboration might be seen as a quick and easy solution to issues of credibility or a lack of diversity, but it can just as easily reproduce silences and impose limitations on ideas. Instead, collaboration needs to be done for the purpose of coming together around a common concern. Stopping to thinking of collaboration as co-labor-ation might be one way to remind ourselves of what is entailed in the act of engaging in collaboration. We should also be attentive to when and how interdisciplinarity and collaboration is good and why it is good in those situations. It can be helpful in exposing the normally invisible theoretical, methodological, and organizational assumptions that are a part of the collective sociality of disciplinary training, but we must be careful not to reproduce those in our collaborative, interdisciplinary work.

Sibyl Diver, a PhD Candidate from UC Berkeley, explained that presenting technical language as a gift might be one way to avoid alienating people with academic jargon. Instead of thinking and acting as though people should be familiar with technical words, she has tried to present them as a tool that could be used by people if they want to, if they find it useful. Several attendees said they liked the idea of using technical language as a gift in this way, rather than as a tool to exclude people.

One theme that ran through the entire day was that the divisions that are invoked to keep research “pure” and inside of the academy can also make it much more difficult to make a difference. Working to enact change outside of an academic context might require the provisional acceptance of logics that we might want to critique within the academy. Natalie’s talk provided an example of this, and Emily York offered an example from her own research as well For Emily, attempts to instantiate changes in the undergraduate nanoengineering curriculum at UCSD might require that she works within capitalist and humanist frameworks that she critiques in her more traditional academic work. Instead of seeing situations like this as a compromise, they could be considered successful in bringing attention to social and ethical issues that would have otherwise been ignored. Transacademic research is one way of being more attentive to these different research products for different intended audiences.

The day ended with concluding thoughts from Jenny. The problem of translation is recurrent, and we talked about the use of translate as a metaphor in this context. In linguistics, translation implies a slight slippage. Do we mean to suggest that, or are we using it differently? It seems we are using translation to describe the process of making research appeal to multiple audiences, but maybe we could find a more productive metaphor that doesn’t suggest incommensurability.

Future meetings will continue to work towards the goal of intercampus collaboration and research that benefits people outside of the academy. This process will require being humble and carefully listening to each other. Jake Metcalf will be working on the UCOP multi-campus research initiative to try to gain institutional and monetary support for our efforts.

Thawing Justice?

Wednesday October 16, 2013


Engineering 2, Room 599

Joanna Radin (Yale, Department of History)  will join us to discuss what happens when biological tissues in freezers take on different ethical meanings over time.  What are our responsibilities towards the life immortal?  Who is responsible?  At this session, we will also discuss the recent NIH decision to give the Henrietta Lacks family the right to oversee uses of the HeLa cell line derived from Henrietta Lacks. See here for a recent magazine article by Radin on these topics.

Joanna Radin, "Thawing Justice?"
SJWG Rapporteur Report
16 October 2013
Rapporteur: Lizzy Hare, Anthropology
Joanna Radin, Assistant Professor in the History of Medicine and of History at the Yale School of Medicine, presented her research on the changing ethical meanings of frozen biological samples. Radin researches the consequences, intended and otherwise, of freezer technology that enables scientists to “stopping the biological clock” (a quote from an advertisement for early cryo equipment that she showed in her presentation). The International Biological Program (IBP), which ran from 1964-1974 included early researchers in cryobiology, who hoped the freezers could work as a kind of time machine, a way to collect and preserve information about indigenous populations before they went extinct.

The samples collected by those researchers are now being used in ways that were wholly unimaginable at the time when the samples had been collected. For example, the samples were collected well before it was possible to cheaply and quickly sequence DNA. One specific example of new uses for old samples is what Radin calls “mosquito anthropology”. Some of the samples in the IBP collections contained both human DNA and malaria plasmodia. Malaria researchers are interested in the samples because the malaria contained within them predates chloroquine resistance. Sequencing the pre-resistance malaria genome might help researchers discover alternative compounds that would be effective against the parasite. In coopting the samples for malaria research, the malaria researchers effectively transform a human blood samples into nonhuman samples. This presents interesting questions and thoughts about the boundaries of ecosystems.

In Radin’s terms “The project that collected the samples was looking to find the role of the humans in the ecosystem, but it ended up finding the ecosystem within the human”. As there is increasing interest in the human microbiome project, the use of human blood and tissue samples to understand nonhuman DNA will likely become more common. Does this change the ethical considerations given the samples and research on them?

Ultimately, the time machine quality of freezers becomes a problem for researchers who have to live within the constraints of their own mortal existence. Radin asked the audience “What happens when scientists reach the end of their careers and they have samples they’ve been the overseer of, but then they pass?” Freezers make it possible for samples to outlive their collector. Many collections are well curated and cared for, and are finding new purchase as new technologies make them relevant to new questions. But collections are also expensive to maintain, may be physically unwieldy, and contain people’s genetic information that may or may not have been collected in an ethical manner.

During the discussion, Donna Haraway remarked, “nothing gets to die”. She says this issue makes a case for why we need to have productive conversations about death, mourning and senescence. Can we start to think of best practices for allowing things to disappear, decay, or simply be left out of the database? She asked us to imagine what we would do if there weren’t freezers that allow us to keep things for as long as possible, to exploited to the very end. This led to James Battle’s question about salvage politics. The collection of many of these samples are linked to colonial politics and the idea that scientists need to extract information quickly before things disappear. This collect now, think later mentality works to defer discussions about ethics into an ever-receding future horizon.

Several comments were related to matters of profit and ownership. How much control can we or should we have over our genetic and biological materials after they have left our bodies? Some participants suggested that scientists should be able to claim a sort of ownership or intellectual property of information that comes from biological tissues, because it is the work of the scientists that make that information legible. However, others are concerned that informed consent cannot adequately handle the possibility that technologies change and that biological tissues may be used differently in the future. With the help of freezer technology, biological samples gathered in the 1950’s have now come to represent something different. In Radin’s words “it may just be blood until someone makes a massive profit”. The samples and their meanings are dynamic.

Micha Rahder asked if the scientists working with cryo technology believe they are creating the future they imagine. Radin said that they work through what she calls “planned hindsight”. The goal of planned hindsight is to plan for a future inhabited by people that look back and think these scientists planned well for the future. Though they recognize that predicting the future has inherent limitations, these scientists try to anticipate the consequences of their plans as best as they can. Radin said that the problem with this is that it is at odds with the salvage conditions under which many of the samples are originally collected, and the trouble with the freezer as technology is that it allows the difficult discussions to be displaced into the future. As the final comment, Haraway reminded us that the person who tries to save everything loses everything.

When does science become justice? Scientific evidence, pesticides and food system justice

Tuesday May 28, 2013


Engineering 2, 599

Panel guests:

Tyrone Hayes, UC Berkeley

Jill Harrison, Colorado-Boulder

Emily Marquez, Pesticide Action Network of North America

At the heart of disputes over pesticide use in agriculture are questions of evidence. Whose evidence is to be trusted? When causal relations between pesticides and human illness or ecological harm are disputed, who decides on their continued use? Is it appropriate for regulators to take into account matters of political economy and social justice when regulating agricultural practices or are there plainly empirical criteria of risk for regulators to use? This panel will bring together a social scientist, an activist organization, a natural scientist, and a pesticide regulator. We will search for shared insights into the meeting of scientific knowledge and democratic governance of food systems, giving credence to the positions of the many stakeholders in food systems—farmers, workers, neighbors and eaters alike.


Putting Earthquake Prediction on Trial: Lessons from the 2009 L’Aquila Earthquake

In spite of recent advances, predicting earthquakes remains difficult and uncertain, challenging scientists both to predict and to communicate the probability of earthquakes to policymakers and to the general public. In October, 2012, seven Italian earthquake scientists were found guilty of manslaughter for their role in failing to communicate the risk of a possible earthquake, shortly before a powerful 2009 earthquake killed more than 300 people in the city of L’Aquila, Italy. This trial has become an international cause celebre; in today’s event, Professor Susan Schwartz (Earth and Planetary Sciences, UCSC) will talk about the state of current knowledge in earthquake prediction, and about her experience of communicating this to multiple audiences in Costa Rica. Professor Massimo Mazzotti, (History, UC Berkeley) will talk about the political and institutional context which led to the seven scientists’ being put on trial, and how their conviction was affected by popular understandings of what scientists and the Italian state should have done.

Following the event, there will be a reception in the Science & Justice Research Center with refreshments and featuring works from our artists in residence.

Tuesday, May 21, 2013 | 4:00-6:00 pm | Oakes Mural Room