Lung tissue samples taken from the body of a soldier who died of influenza in 1918 are pictured in an undated photo. Credit: Armed Forces Institute Of Pathol, NYT

SJRC Co-Director Jenny Reardon published an Op-Ed in the San Francisco Chronicle on March 2, 2013, “Should patients understand that they are research subjects?” In the article she recounts visiting a physician at UC San Francisco and not being able to parse the standard informed consent to having tissues and/or medical data used anonymously in medical research. 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 actually imposible to know what one is consenting to when one signs these ubiquitous forms, making that ‘consent’ tenuous at best. Reardon, whose research examines the social, ethical political dynamics of biomedicine and genomics, notes that even experts like her are in the dark about how their tissues might be used in the near future, and recent research has shown that while researchers may aspire to keeping tissues and data anonymous it is no longer technically feasible.

I have spent two decades studying this minefield, and even I had a hard time making sense of what it might mean for these researchers to have access to my samples. For example, UCSF would be required by law to make my samples “anonymous,” yet research published in Science the day of my visit revealed that even anonymous samples can be reidentified. Does this mean that information gained from my samples might be linked back to me?

Reardon cites recent developments in patient consent at the University of Washington medical centers as a model for UCSF and other providers to adopt. At the University of Washington, patients are able to opt out of research without their physicians knowing, and thus not feel as if they are risking their access to care. Additionally, Reardon supports giving patients more rights to affirmatively opt in to research whenever their tissues or data is desired by researchers.

The San Francisco Chronicle editorial board also published an editorial in support of Reardon’s proposal. The editors suggest that as the US Department of Health and Human Services revises its standards for medical consent, they should keep these principles in mind:

— Patients may not have legal “property,” but they still have rights. Regulators should err on the side of more patient disclosure, not less.

— Compensation is going to be a big question going forward, but it doesn’t have to be monetary. If there’s no longer a way to provide patients with anonymity, will they have free or reasonably priced access to medical developments that come about as a result of their cells or DNA?

— Standardized disclosures should be encouraged throughout the industry. Different institutions have widely varying policies. Patients don’t deserve to be confused.

In response to these two pieces, UCSF’s Elizabeth A. Boyd, associate vice chancellor for ethics and compliance, and Daniel Dohan, associate professor of health policy and social medicine, noted that the success of medical research rests on relationships of trust between physicians, researchers and patients. The development of personalized medicine, which promises to revolutionize health care by tailoring treatments to individuals, will require willingness on the part of patients to provide samples for research and testing. Boyd and Dohan note that UCSF supports revising consent standards, and cite the recent creati0n of EngageUC, an initiative on the part of UC physicians and faculty to develop new comprehensive guidelines.

We want to develop a consent process and a set of policies that will help ensure that all patients – whether they have volunteered for specific research, are donating leftover tumor samples, or are being admitted to the hospital for care – truly understand what information may be gleaned from their samples, how that information will be used, whom it will be shared with, and what privacy controls can – and cannot – be guaranteed.

Reardon and the rest of the UCSC Science & Justice Research Center will continue to contribute to these conversations.

INFORMATIONAL MEETING: Wednesday March 6 2013, 12:30-2:00PM, at the Baytree Conference Center. Lunch will be provided.

SPRING 2013 COURSE: Science & Justice: Experiments in Collaboration (SOCY/BME/FMST 268A and ANTH 267), Prof. Andrew Mathews, Thursdays 9-12:00

We are pleased to announce new opportunities for graduate students to join our NSF-funded Science & Justice Training Program. The SJTP brings together students and faculty from across all departments and divisions on campus to develop innovative research at the intersections of science and society. Students will receive training and mentorship in interdisciplinary research methods and develop collaborative research projects. The spring course, Science & Justice: Experiments in Collaboration, will be the first step in a (pending) Graduate Certificate Program that will provide students with a number of opportunities for research funding, planning and hosting colloquia related to their research, training in writing for interdisciplinary academic and non-academic audiences and participating in other NSF-sponsored projects.

Enrollment in the course is required for participating in the Training Program. Attending the informational meeting is strongly encouraged, but not required.

Past collaborative research projects have included:

• Physicists working with small scale farmers to develop solar greenhouses scaled to local farming needs
• Colloquia about the social and political consequences of scientific uncertainty in climate change research
• Examining how art can empower food system justice movements
• Working with local publics to improve African fishery science

Prior SJTP Fellows have come from the following departments: Philosophy, Physics, Ecology and Evolutionary Biology, Environmental Studies, History of Consciousness, Digital Arts and New Media, Sociology, Earth and Planetary Sciences, Anthropology, and Politics.

Click there to download a flyer for this event.

A number of past and present Science & Justice members have recently edited special editions of scholarly journals focussed on themes commonly explored in Science & Justice colloquia and courses. These collections highlight the ways in which S&J facilitates thinking across boundaries and gathering around interesting objects.

Assistant Director of the S&J Research Center  Jacob Metcalf and longtime friend of S&J, Thom van Dooren (University of New South Wales), co-edited an edition of Environmental Philosophy (9:1) titled Temporal Environments: Rethinking Time and Ecology. The collection of essays addresses the role that temporality, or lived time, should have in environmental philosophy, and especially ethics. The role of time in environmental ethics has largely been restricted to an empty container for human agency to do good or ill. By understanding time as material, produced, constructed, maintained, lived, multiple, and a more-than-human concern, the authors in this collection are able to ask which times are liveable for humans and non-humans alike. This topic grew out of Science & Justice discussions, especially the Slow Science event in Fall 2011.

Astrid Schrader (York), a founding member of the Science & Justice Working Group, co-edited with Sophia Roosth (Harvard) a special issue of differences: A Journal of Feminist Cultural Studies (23:3) titled Feminist Theory Out of Science. The issue features articles by a number of Science & Justice members and friends, including Karen Barad, co-Director of the Science & Justice Training Program. Attending to the rich entanglements of scientific and critical theory, contributors to this issue scrutinize phenomena in nature to explore new territory in feminist science studies. With a special focus on relating theory to method, these scholars generate new feminist approaches to scientific practice. What emerges from these diverse essays is an approach to critical thinking that inhabits, elaborates, and feeds upon scientific theory, holding feminist theory accountable to science and vice versa.

Lindsay Kelley (Public Library of Science), an early member of the Science & Justice Working Group, and Lynn Turner (Goldsmiths) co-edited an issue of parallax (19:1) titled bon appétit. This issue includes a contribution from S&J Assistant Director, Jacob Metcalf, on the ethics of cultured meat and the stories we tell about technoscientific advances. bon appétit explores the limits of eating, confronting the boundaries between self and other, filth and food.  At the time of writing escalating food costs – especially as linked to climate change – provoke daily crises, demonstrating the urgency of a wholesale rethinking of the matter of what, how and who we eat. The essays engage different strategies and target different aspects of this erstwhile basic need.

Forthcoming shortly as a special issue in Science Technology & Human Values, S&J advisory board member Laura Mamo (SFSU) and Jennifer Fishman (McGill) have collected articles on the Entanglements of Science, Ethics and Justice. This issue grew out of a conference about topics in science and justice at SFSU, including an article on genomics and justice by Jenny Reardon, co-Director of the S&J Research Center.

Karen Barad, co-Director for the Science & Justice Training Program, will provide the keynote address at the upcoming feminist science studies conference at CUNY, MATTERING: Feminism, Science and Materialism.

This conference, organized jointly by the Center for the Study of Women and Society, the Committee on Interdisciplinary Science Studies and the Advanced Research Collaborative at the Graduate Center, City University of New York, will engage with feminist perspectives on the onto-epistemological questions raised by the materialist turn.

In the past decade, feminist theory has elaborated new materialist perspectives to re-imagine nature, biology, and matter more generally and to critically address new developments in biology, physics, neuroscience and other scientific disciplines. This scholarship revisits the relationship between human corporeality and subjectivity, questions and redefines the boundaries of human and non-human and nature and culture, and elaborates on their mutual entanglements. New feminist theories address materialization as a complex and open process and matter as lively and productive. The conference will address: the intellectual and scientific context of the new turn toward materialism; the relation of matter (including the biological body) to the social; the insights, knowledge and methodologies offered by the new materialist studies of science; the political implications of neo-materialism for feminism as a project, theory and a movement for social justice; theoretical innovations for addressing material-discursive relations and the epistemological questions they raise; and empirical research using materialist feminist frameworks.