Author Archives: aimurray

SJRC in conversation with Peter Yu and David Haussler

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

Rap Report > Science and Justice in an Age of Big Data: A Conversation with Peter Yu and David Haussler

On January 22, 2014, the Science & Justice Working Group hosted 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) facilitated this 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 Chronicle’s 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 Reardon’s articlethat 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 Timespublished 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.

This conversation between Peter Yu and David Haussler, facilitated by Jenny Reardon, was 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

Jan 16, 2014 | Human / Non-Human Collaboration Across the Arts & Sciences

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


Wednesday February 26, 2014
4:00-6:00PM
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 (http://hypernatural.com/)
Presenters: UCSC Emeritus Faculty Helen and Newton Harrison

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

Thursday February 27, 2014
12:00-2:00PM
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
4:00-6:00PM
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 (http://www.symbiotica.uwa.edu.au/)

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
science.

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,
etc.

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.

Nov 13, 2013 | Investigative Justice

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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.

Interview with Science & Justice appears in the Danish Daily Information

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Last June (2013), members of the Science & Justice Research Center were interviewed by former UCSC EAP (Education Abroad Program) student Bue Thastum.  While the original interview appeared in the Danish Daily Information, below is the translated article.

 

Should research create a better world?

Science can have other forms of social relevance than just economic. At the University of California Santa Cruz a young research center is trying to create interdisciplinary dialogues on how to practice science and engineering in ways that contribute to a more just world.

The debate regarding the role of research in society has often stood between two different positions. On the one hand voices that speak of the importance of maintaining independent basic research, on the other hand, those who want research that’s more directly connected to society. In the Danish debate the latter, however, has typically been in a rather narrow economic sense – emblematic summarized in former Minister of Science Helge Sander’s (V) slogan of the movement from research to invoice. A political ambition that, as it was recently demonstrated in a report from the think tank DEA, didn’t actually turn out as hoped anyway.

But the way science relates to society can also be on other broader levels than merely economy. An example is the young research center Science and Justice at the University of California Santa Cruz who, based on the fact that science and engineering plays a huge role in shaping our lives and society, are working to create cross-disciplinary conversations about how it can be done in a way that contributes to the creation of a better, more just world.

The group, which has existed since 2006 but only formally became a research center last year, is particularly unique in the way it manages to bring together students and researchers across the gap between the natural sciences, social sciences and humanities in its seminars and educational programs.

More than fraud

The center is housed in two humbly furnished rooms on the campus of the university. In one of those, assistant director Jake Metcalf bids welcome and explains that one of the intellectual approaches of the center is a discussion of what research ethics means.

“The understanding of what it means to practice science ethically has been too shallow,” Jake Metcalf says.

He has a PhD in philosophy himself and has amongst other things done research on applied ethics in the life sciences. He believes that part of the problem is the way science students are being educated.

“Most of the science ethics teaching is based on a model named Responsible Conduct of Research,” Metcalf explains.

Academic integrity, avoidance of plagiarism and informed consent from research subjects are typical topics. All this is of course essential, he admits:

“But one of the premises for Science and Justice is that this is not enough. It does not tell you much about the social good that can be achieved by doing science in one way or the other. So we try to create a space to think about what ethics may be beyond the Responsible Conduct of Research.”

One of the ways that space more specifically takes shape is in form of the events the group is organizing, in which they try to get speakers from different disciplines to come together around a common issue, and hopefully bring perspectives that can mutually enrich one another.

Anxiety of politics

Shortly before the summer holidays, for example, there is an event on airborne pesticide drifts and social justice. It’s Tuesday afternoon in one of the new glass-clad buildings in the scientific part of the campus. On the wall hangs a poster with the human genome, and in two rows around a U-formation of tables an audience counting anthropologists as well molecular biologists is seated.

One speaker is an environmental sociologist and has studied bureaucratic and political processes surrounding the regulation of pesticides in the United States, another is a representative of an NGO that teaches poor residents from rural areas to document pesticide drifts from nearby farms, and a third is the biologist Tyrone Hayes, who discovered how the pesticide Atrazine creates hormonal disorders in frogs and subsequently, under great media attention, has thrown himself into a prolonged and spectacular public campaign against the company that manufactures the pesticide.

A central theme in both the presentations and the subsequent discussion is the role scientific evidence plays in facilitating political change.

The NGO representative explains how being able to use scientifically robust methods has helped lay people to push for political change. Conversely, the two other speakers describe a widespread culture amongst scientist of not being interested in engaging in political processes. As the company behind Atrazine tried to discredit Hayes, he found about 60 other scientists in the world, all of which dealt with the effects of Atrazine, but when the US Environmental Protection Agency held a hearing on the pesticide, no one showed up.

Apart from the seminars, Science and Justice’s main activity right now is the training program for graduate students.

The program is being offered across all the divisions of the university and is thus concretely putting future physicists, sociologists, engineers and political scientists in the same room. The background for this is that justice, as Science and Justice understands it, is not something you can define once and for all, and hence not necessarily something that can be kept within the boundaries of a single discipline either.

Kate Richerson is a PhD student in Biology and one of the students who has completed the program. She says that it especially has given her a sense of the complexity of the social life scientific studies gets after having been completed. Many scientists have good intentions, but they lack that understanding if they really want to create a better world.

“There is a tendency that it just gets taken for granted that science can help,” says Kate Richerson, “but the work you’re doing often gets to have its own life, when you put it out into the world.”

A life that’s exactly influenced by economy, social relations or culture, and thus one that other disciplines could help provide a more nuanced image of.

Interdisciplinary diplomats

The hope of the program is that the students by gaining an understanding of each other’s language, and by building up a sense of comfort in talking together across disciplinary boundaries, eventually will be better to see possibilities for collaboration.

But it’s not the ambition of Science and Justice to get the students to put their professional identities behind them, says Andrew Mathews, who until the summer was the director of the center.

“It is about building the ability to become diplomats across disciplinary differences,” Andrew Mathews says.

“I actually think ‘interdisciplinary’ is a meaningless word. Everyone says they are, but what does it mean? Instead, it is about providing opportunity for people from different disciplines to have conversations about things that matter to them. That’s our goal. And from there, maybe new research questions can emerge. ”

 

Thastum, Bue. “Should Research Create a Better World.” Danish Daily Information. Sept. 2013. n. pag. Web. 26 Sept. 2013.

Nov 02, 2013 | Workshop: Transacademics: Making Use of Interdisciplinary Research Methods Outside of the Academy

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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.

 

Agenda:

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.

Jenny Reardon, Director of the SJRC, gives lecture in Clarke Forum Meanings of Race Series at Dickinson College

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The opening decade of this millennium witnessed genome scientists, policy makers, critical race theorists and world leaders proclaiming the anti-racist democratic potential of human genomics. These views stand in stark contrast to the 1990s concern that genomics might create new forms of racism. This lecture explores this shift, both why it happened and what it reveals about emerging challenges for understanding issues of race and racism in the genomic age.

This event is sponsored by the Clarke Forum for Contemporary Issues and co-sponsored by the Departments of American Studies, Anthropology, and Spanish & Portuguese. This program is also part of the Clarke Forum’s semester theme, The Meanings of Race.

Video of lecture  http://clarke.dickinson.edu/jenny-reardon/

Oct 03, 2013 | Thawing Justice?

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Wednesday October 16, 2013

4:00-6:00PM

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.

UCSC Science and Justice Program Receives National Attention

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UCSC Science and Justice Program Receives National Attention
By Kara Guzman

Santa Cruz Sentinel

POSTED: 08/20/2013 05:53:05 PM PDT

SANTA CRUZ — An interdisciplinary team of professors and graduate students from UC Santa Cruz’s Science & Justice Training Program have been recognized on the national stage for their work to integrate ethical training into scientific fields.

The team recently published an article in Public Library of Science Biology, a national peer-reviewed science journal, about the need to create institutional space for the exploration of the links between science and questions of ethics and justice, and how they were able to achieve that at UCSC.

The training program, which teaches both science and humanities graduate students to integrate ethical questions into their work, is the first of its kind, according to co-director Jenny Reardon. One of the program’s goals is to inspire the growth of this type of work on a national level, said Reardon.

“We live in a world where science and technology are a part of everybody’s lives,” said Reardon, who is an associate professor in sociology and faculty affiliate in UCSC’s Center for Biomolecular Science and Engineering. “What we wanted to do was build a space where scientists and engineers could come together with social scientists and humanists around areas of common concern.”

Reardon listed topics such as dam construction, fish stock management and genomics as areas where people beyond just scientists are needed to answer broader political and justice questions.

A subtle yet significant shift has occurred in the principles of the National Science Foundation, a federal agency that funds approximately 20 percent of federally supported university research, and the agency now seeks to fund research that explicitly engages the public and benefits society, according to the article.

This shift has resulted in an effort at the national level to increase science ethics education, according to assistant program director Jake Metcalf. Traditionally science ethics education is built around responsible conduct of research, or “don’t cheat, don’t steal, don’t lie,” said Metcalf.

“We’re trying to expand that to say we can develop better forms of knowledge when we actually have space and funding and time to recognize the interdisciplinary nature of the problems that scientists and engineers encounter,” said Metcalf.

Along with coursework that teaches graduate students how to identify intersections between science and ethics, such as in genomics or climate change, the program offers a working group and research center, which provide an institutionalized space to explore these intersections.

Science & Justice fellow Tiffany Wise-West, a civil engineer who is completing a Ph.D. in environmental studies, said that the program helped her think beyond just engineering, and brought the social implications of her work to the foreground.

“It’s added a new dimension,” said Wise-West. “I had not thought in that way before.”

A key part of the program is encouraging scientists to step away from the “publish or perish” pressure and take the time to reflect on these broader issues. Reardon said she sees a long-standing competitive culture within the scientific community that encourages sacrificing personal time to quickly churn out scholarly articles.

“That’s why I think these questions of justice are important,” said Reardon. “It encourages us to think about what life is about, what is the good life and what is the place of knowledge and knowledge production.”

Science and Justice Training Program explores ethics of scientific research

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Science and Justice Training Program explores ethics of scientific research

Founders and participants outline program in ‘PLOS Biology’

By Guy Lasnier

Jenny Reardon is an associate professor of sociology and co-director of the Science and Justice Training Program. Co-director Karen Barad is professor of feminist studies and history of consciousness.

A subtle but significant shift in how national science policy makers regard the outcomes of scientific research has created opportunities for innovative programs such as the Science and Justice Training Program (SJTP) at UC Santa Cruz.

The interdisciplinary program, within UCSC’s Science and Justice Research Center, trains graduate students to explore the effects and impacts of their research on society. Writing recently in a scientific journal, members of the training program, co-directed by Jenny Reardon, associate professor of sociology, and Karen Barad, professor of feminist studies, outline the UCSC effort that was founded in 2010 with a National Science Foundation grant.

The article “Experiments in Collaboration: Interdisciplinary Graduate Education in Science and Justice” appears on the community page of the July 30 issue of PLOS Biology.

“In a world increasingly shaped by science and technology, the SJTP aims to offer one pathway for science and engineering to connect to social issues and public concerns in a more practical, substantive, and thoughtful way,” the authors write.

Although policy changes over the past 20 years have led to an increased awareness of the impact of science on society, little direction is provided on how to proceed. That has created “an unexpected and underexploited benefit,” the authors write. “Where there is a mandate with little guidance, there is also an opportunity to innovate.”

At UCSC that means increased ethics education requirements for graduate students and a training program to deliver it. It means scientists and engineers working with colleagues in the humanities, arts, and social sciences.

As an example, the authors cite two physics students working on solar greenhouse technology for industrial applications. They had hoped their technology also would be useful to and embraced by small-scale organic farmers.

However, after interviewing farmers using techniques learned in an SJTP research methods seminar, they learned the farmers wanted nothing to do with high-tech approaches. This prompted the researchers to rethink who might benefit from their work.

The goal is “not to turn scientists into social scientists or humanities scholars or vice versa,” the authors write. “Rather, it is to create opportunities for graduate students and other SJTP members to gather around common objects and concerns (e.g., a greenhouse, climate change, or the use of racial categories in biomedical research.”

Also contributing to the article were Jacob Metcalf, a postdoctoral fellow for the training program; along with graduate student fellows Ian Carbone, Martha Kenney, Jennifer Liss Ohayon, Derek Padilla, Miriam Olivera, Kate Richerson, and Tiffany Wise-West.

Andrew Mathews co-authors article on the contributions of anthropology to understanding climate change

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SJRC Director Andrew Mathews contributed to a recently published Perspectives piece in Nature Climate Change (pdf here) detailing how anthropologists can contribute to understanding the social and political dynamics of climate change. In this piece, Barnes et al. identify three types of insights anthropologists are well suited to provide.

First, the discipline draws attention to the cultural values and political relations that shape climate-related knowledge creation and interpretation and that form the basis of responses to continuing environmental changes. These insights come from the in-depth fieldwork that has long been the hallmark of anthropology. The second contribution is an awareness of the historical context underpinning contemporary climate debates — a result of archaeologists’ and environmental anthro- pologists’ interest in the history of society–environment interactions. The third is anthropology’s broad, holistic view of human and natural systems, which highlights the multiple cultural, social, political and economic changes that take place in our societies. Societal dynamics, as drivers of change, always interact with, and often outweigh, climate change — an issue that needs recognition for the success of public policies.

The authors note the challenges of interdisciplinary collaboration that Science & Justice has also worked to address. Varied temporal and geographic scales, differing approaches to qualitative and quantitative work, and contrasting commitments of the values of specificity and generalization for understanding phenomena can sometimes put social and natural sciences at cross purposes. However, when gathered around shared and pressing problems, the friction between disciplines can be made productive rather than detrimental or competitive. They write,

Ever more serious challenges to scientific understandings of climate change and policy responses — in both domestic and international political arenas — make the climate science and policy community more open to inputs from the social sciences. This Perspective argues that anthropology could play a central role in this, by offering methods to access the social, cultural and political processes that shape climate debates. Just as anthropologists can learn from climate science about the changing environmental conditions we live in, so too can climate scientists learn from anthropological research.

Science & Justice aims to foster just such cross-disciplinary collaboration and literacy, bringing together multiple forms of expertise to address major problems in contemporary science and technology.