Jenny Reardon’s op-ed sparks conversation about medical and genetic privacy

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.

 

Jenny Reardon Awarded Brocher Foundation Residency

Jenny Reardon, Associate Professor of Sociology, Founder and Co-Director of the Science & Justice Research Center at the University of California, Santa Cruz was awarded a Residency with The Brocher Foundation to write her upcoming book The Post-Genomic Condition: Ethics, Justice and Knowledge After the Genome.

The Brocher Foundation is a Swiss non profit law Foundation offering visiting researchers the opportunity to stay at the Brocher Centre in a peaceful park on shores of Lake Geneva, to write a book – articles – an essay or a PhD thesis. The visiting positions are a unique occasion to meet other researchers from different disciplines and countries as well as experts from numerous International Organizations & Non Gouvernemental Organizations based in Geneva such as WHO, WTO, WIPO, UNHCR, ILO, WMA, ICRC.

Since 2007 the Brocher Centre has hosted more than a hundred junior and senior researchers from all around the world for stays ranging from one to six months.

Residencies with the Brocher Centre give researchers (PhD students to Professors) the opportunity to work on projects on the ethical, legal and social implications for humankind of recent medical research and new technologies.

 

Mar 08, 2013 | Critical Nutrition Symposium

March 8, 2013

9:00AM-5:30PM

261 Social Sciences I

Advice about what to eat for health and well being is pervasive in the modern world, and such advice is delivered as if it were uncontroversial, universally applicable, welcome, and effective. When it appears not to work, rather than reflection on the scientific, cultural, and sociological underpinnings of the endeavor, the response has been for more informative food labels and more emphasis on food education. What’s wrong or missing in conventional nutritional practice? What are its effects in terms of human health and social justice? What other approaches might work better? This symposium will bring together scholars from multiple disciplines and perspectives to comment on the content and delivery of nutritional science. Invited guests include Charlotte Biltekoff (American Studies and Food Science, UC Davis), Jessica Hayes-Conroy (Women’s Studies, Hobart and William Smith Colleges), Adele Hite (Public Health, University of North Carolina-Chapel Hill), Aya H. Kimura (Women’s Studies, University of Hawai’i-Manoa), Hannah Landecker (Sociology and Center for Society and Genetics, UCLA), and Jessica Mudry (Center for Engineering in Society, Concordia University). UCSC food scholars Julie Guthman, Melissa Caldwell, Nancy Chen, and Jake Metcalf will provide commentary.

This event is sponsored by the Multi-campus Research Program on Food and the Body and the “Knowing Food” Research Cluster of the Center for Global, International, and Regional Studies. Additional support has been provided by the Community Studies Program, the Science & Justice Research Center, the Department of Environmental Studies, and the Department of Sociology.

Please RSVP to Lisa Nishioka (global@ucsc.edu) if you plan to attend.

For questions regarding the program contact Julie Guthman (jguthman@ucsc.edu)

Feb 26, 2013 | Measuring and Predicting Carbon Absorbed in Reforestation and Averted Forest Fires: Problems of Communicating Uncertainty about Landscape Change

Measuring and Predicting Carbon Absorbed in Reforestation and Averted Forest Fires: Problems of communicating uncertainty about landscape change

 

Karen Holl (UCSC, Environmental Studies)

Maggi Kelly (Dept. of Environmental Sciences, Policy & Management, UC Berkeley)

Tim Forsyth (Department of International Development, London School of Economics)

Over the last few years the contribution of deforestation and forest fires to climate change has come to be of increasing interest, even as new technologies of remote sensing and modeling have made it possible to measure and predict landcover change with unprecedented accuracy. These technologies have made it possible to imagine environmental policies which compensate landowners for averted deforestation (known as REDD, Reduced Emissions through Degradation and Deforestation), or to support thinning forests in order to prevent forest fires. However, increased precision also introduces new problems of communicating uncertainty to policymakers and of gaining the trust of the general public. Professor Holl will talk about the challenges of including tropical forest restoration in proposed markets in carbon offsets, Professor Kelly will talk about her work with remote sensing technologies such as LIDAR in order to measure California forests and to inform the general public about forest conditions. Tim Forsyth is a specialist in political approaches to environmental change and international development, and will moderate a conversation about the challenges of communicating uncertain knowledge about forests to policymakers and other audiences.

February 26, 2013 | 4:00-6:00PM | Engineering 2, Room 599

"Measuring and Predicting Carbon Absorbed in Reforestation and Averted Forest Fires:
Problems of Communicating Uncertainty about Landscape Change"
SJWG Rapporteur Report
26 February 2013
Rapporteur: Martha Kenney, History of Consciousness
Maggi Kelly (Berkeley) spoke about her work on the Sierra Nevada Adaptive Management
Project, a collaborative partnership between a UC science team, federal and state agencies, and
the public with the goal of learning how to ensure long-term sustainability of the Sierra Nevada
forest system. Specifically they are looking into the role of fire in forest management. Firesuppression
policies have lead to fuel build-up. The Forest Service developed a “strategic fire
management” plan where fuel treatments would be used on the ground to control the fire.
However, this had only been modeled, not tested. Due to public concern UC scientists were
brought in as a neutral party to investigate the efficacy and impact of the fuel treatment plan.
Kelly was a member of the spatial team who used helicopter-mounted LiDAR (Light Detecting
and Ranging) to measure the efficacy of the treatments. Recent projects for the spatial team
include using LiDAR data to map Fisher (a medium-sized mammal of interest to environmental
activists) habitat and finding the best allometric equations to use LiDAR data to estimate the
forest biomass. One public initiative has been to introduce citizens to virtual forests rendered
from the LiDAR data. This offers one medium to communicate both the potential and
uncertainty of their forest models.

Karen Holl (UCSC) spoke about the opportunities and concerns of the UN’s REDD+ (Reducing
Emissions from Deforestation and Forest Degradation) initiative in the context of tropical forest
restoration. Under the REDD+ scheme local people are paid to participate in reforestation
projects. Holl expressed some logistical concerns about REDD+ including how to set a baseline
for how much carbon you have to begin with, monitoring, permanence, and respecting human
rights. In her own project in Costa Rica, Holl learned that it is important where you restore and
how you restore forests. Her team has been experimenting with creating “tree islands,” which
use fewer resources and stimulates natural recovery. Projects such as these help Holl investigate
why there is such variation in the rate of recovery in order to increase the predictability of active
restoration. However, Hall is still concerned about the efficacy of paying farmers for restoration
and that a focus on carbon obscures questions of biodiversity. Because of these misgivings, Holl
argues that forest policies should concentrate on preserving relatively intact forests and to value
carbon, biodiversity, and human livelihoods together.

Tim Forsythe acted as respondent for Kelly and Holl, drawing from his own experience in forest
policy in Asia. Agreeing with Holl he argued that REDD+ offers a strategy to increase forest
cover and reduce carbon, but it does not necessarily or directly address people’s livelihoods and
biodiversity. Other limitations to REDD+ he noted were that under many schemes only
indigenous people are protect, that plantation forests are acceptable for meeting carbon goals,
and that carbon does cost enough (10 dollars/ton) to encourage the kind of reforestation that is
necessary. Forsythe argued that we need new ways of using climate change policy to make better
livelihoods for the people who rely on the forests for income. One alternative he believes offers
a better model is the approach of Climate Change, Agriculture, and Food Security (CCAFS),
who ask rural people what they need and value in the context of global climate change.

During the question and answer period, questions centered around the uncertainty of scientific
modeling and problems with climate change policy. Kelly spoke about her role as a trusted
liaison (or neutral party) between the public and the Forest Service. Transparency and clear
communication of uncertainty are central to her team’s success, which includes destabilizing the
notion that a map or a model tells the truth. These uncertainties have lead to combining
approaches. For example the LiDAR data about Fisher habitat is correlated with the Fisher team
who monitor individual animals. However, how much the precision of the LiDAR data helps
resolve questions around fire remains to be tested. There are many equations and models and
they need to be checked against data on the ground. Holl explained that in tropical forests there
are so many species that the numbers you plug into equations for wood density require a lot of
guess work. She also explained that when a model is working it doesn’t necessarily represent the
reality of a situation but helps scientists to identify data gaps and to generate hypotheses.
Forsythe was concerned that these model-generated hypotheses don’t travel well and that, in the
context of REDD+, that these hypotheses have scientists and policy makers asking the wrong
questions. He wondered if REDD+ is helpful for the forests or a fast, cheap, and efficient
solution. Echoing the theme of “slow science” that the SJWG has been considering, he argued
that we should pause and ask more people what they would like to do with their landscapes.
From these discussions we got a real sense of the complex relationships between models, data,
policy, and on the ground efficacy happening within forest science in the context of climate
change.

Feb 23, 2013 | Seeding Sustainability: Hunger, BioTech, and the Future of Food Systems

Saturday February 23, 2013

7:00-10:00PM

UCSC Media Theater

Confirmed Speakers:

Miguel Altieri (UC Berkeley)

Eric Holt-Gimenez (Food First)

Kent Bradford (UC Davis)

Moderator: Jacob Metcalf (UCSC Science & Justice Research Center)

Registration (free) is kindly requested.

In collaboration with the UCSC Center for Agroecology and Sustainable Food Systems, the Science & Justice Research Center will host a panel discussion on the role of genetically modified crops within sustainable food systems in the global South. Food and agroecology activist and scholar Dr. Vandana Shiva will headline a panel with diverse perspectives from crop science, philanthropy. This panel will cap the CASFS weekend-long gathering and seed exchange event Strengthening the Roots: Seeds and Justice Convergence.

Two decades of experience with GMO crops, including mixed assessments of environmental impact and increased yield, indicate that controversies about biotech agriculture is not just (or even primarily) about the modified plants themselves. Rather, a complex social system travels with the plants. This system includes intellectual property, legal and political regimes, chemical inputs, industrialized and centralized food processing, farmer debt and much more. As the debate over GMO crops has evolved, particularly in the global South, the controversies have shifted from genetic modification techniques to the appropriateness of that social system for providing environmentally beneficial and economically secure food systems. Thus, this panel seeks to investigate the question of under what conditions ag-biotech is capable of providing sustainable—in all its ecological, cultural, and economic connotations—food systems in the global South? And are achieving those conditions both plausible and worth whatever trade-offs may be made in pursuit of extending and improving upon more traditional modes of growing food?

Feb 19, 2013 | Mast Fruiting and Ectomycorrhizal Associates: How Looking Below Ground Reshapes Above Ground Ecologies and Politics

February 19, 2013

4:00-6:00PM

Engineering 2, Room 599

Lisa Curran (Woods Institute for the Environment/Department of Anthropology, Stanford University)

Respondents: Anna Tsing (Anthropology, UCSC) and Andrew Mathews (Science & Justice Research Center and Anthropology, UCSC)

Lisa Curran is an anthropologist and tropical ecologist who, over the last twenty five years, has carried out extensive research on forest ecology and plant/mycorrhizal relations in Indonesian forests. Through her engagement in policy research and advocacy she has participated in key forest policy conversations, including through her criticism of oil palm plantations in Latin America and South East Asia. Lisa’s current interdisciplinary research programs examine the effects of land use change, climate, drought and fire on carbon dynamics and biodiversity; and impacts of governmental policies and industrial practices on ecosystems and rural livelihoods in Asian and Latin American tropical forests. Today she will talk to us about her research on the relationship between below ground ectomycorrhyzal associates and above ground mast fruiting by important dipterocarp tree species. In a public conversation with Anna Tsing (Anthropology, UCSC) and Andrew Mathews (Science & Justice Research Center and Anthropology, UCSC) she will talk about how this research has informed her engagement with and criticism of oil palm plantations, and about how it broadens competition models that have historically been dominant in ecology.

Informational meeting for new cohort of Science & Justice Graduate Training Program

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.

 

Recent special issues edited by Science & Justice members, past and present

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 provides keynote address to “MATTERING: Feminism, Science and Materialism” conference

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.

Jan 22, 2013 | Green Neuroscience: Re-envisioning How We Study the Brain and Ourselves

 

In this Science and Justice Working Group event, Dr. Ann Lam and Dr. Elan Liss Ohayon present the story of establishing the Green Neuro Lab. They will outline some of the key issues facing the neurosciences and describe the lab's efforts to advance a sustainable and inclusive neuroscience. They will also outline how their current research directions, in studies of neural imaging, cognition, and computational neural modeling, address their objectives. They hope to engage the audience in a discussion of how neuroscience can be re-envisioned in the context of science, justice and the environment.

There is an urgent need for the neuroscience community as a whole to reexamine its purpose and approach to research. Simply put, the overall trajectory of neuroscience research today is generating toxic waste, causing harm to other species, and creating fractured categories of human health that result in unnecessary stigmatization and marginalization. Many of these issues stem from long-established and largely unchallenged belief systems about the brain and brain-environment interactions. These problems are also systemic in nature in that much of neuroscience research is driven by funding structures and other factors that run counter to individual and community interests.

The aim of the Green Neuroscience laboratory is to advance our understanding of the brain by posing questions and conducting careful research in a sustainable and creative manner. The lab strives to demonstrate that neuroscience research can be less harmful to the environment and improve health while simultaneously recognizing the importance of neurodiversity, community, and the environment. Another central goal of the lab is to improve the dialogue between researchers and the publics they strive to help.

Tuesday, January 22, 2013 | 4:00-6:00 PM | Engineering 2, Room 599

Bios

Dr. Ann Lam received her PhD from the University of Saskatchewan and completed her postdoctoral research at the Salk Institute for Biological Studies. She is Director and Founder of the Green Neuroscience Laboratory. Her work has focused on brain development and cognitive conditions, including Williams Syndrome. She is currently working on developing an open atlas of brain metals to study the relationship between metals and cognition.

Dr. Elan Liss Ohayon received his PhD from the University of Toronto and completed a postdoctoral fellowship at the University of California San Diego. He is currently a research associate at the Salk Institute. He is also Co-Director and Founder of the Green Neuroscience Laboratory. He is a neurocomputational researcher, with research projects relating neural network structure to activity in epilepsy and social cognition.

"Green Neuroscience: Re-envisioning How We Study the Brain and Ourselves"
SJWG Rapporteur Report
22 January 2013
In this Science and Justice Working Group event, Drs. Ann Lam and Elan
Ohayon presented the story of establishing the Green Neuroscience Lab (http://greenneuro.org/).
The aim of the Green Neuroscience laboratory is to advance our understanding of the brain by
posing questions and conducting careful research in a sustainable and creative manner. The lab
strives to demonstrate that neuroscience research can be less harmful to the environment and
improve health while simultaneously recognizing the importance of neurodiversity, community,
and the environment. Another central goal of the lab is to improve the dialogue between
researchers and the publics they strive to help. In this presentation, they also outlined how their
current research directions, in studies of neural imaging, cognition, and computational neural
modeling, address their objectives.

Dr. Lam and Dr. Ohayon began the presentation by asking everyone in the room to describe what
they think a “green neuroscience”, or more broadly a “green science" might entail. Their
presentation outlined the issues with neuroscience research today and how the principles of their
lab address and go beyond these trends. They also described the physical space and the research
foci of their lab.

Problems with the Trajectory of Neuroscience Research
The presenters briefly described the concerns of brain/mind-related research as depicted by
popular culture, referring to stories such as Frankenstein, The Island of Dr. Moreau, Brave New
World, and Total Recall. They then outlined some troubling objectives and research of
neuroscience that may actually go beyond those of the sci-fi realm. These included military and
commercial applications, various psychiatric therapies, the extensive use of viral vectors, and a
push toward mono cultures, pathologizing, medicalization, and marginalization. Examples
discuss included: the Diagnostic and Statistical Manual of Mental Disorders, optogenetics, and
bias due to close connections between academic research and for-profit industries. They also
described the large quantities of hazardous waste generated by most neuroscience approaches
and harm to other species.

Principles of Lab
They outlined some of the laboratory principles, which included: developing green, non-toxic,
sustainable, and restorative research methods; no captive, experimental animal testing; aiming to
increase the overall autonomy of individuals; non-hierarchical research and just labor practices;
nurturing of cooperative science; encouraging an appreciation of neurodiversity rather than
“typical” brain structures and functions; sustaining responsible and rigorous research practices
that also incorporate humor and deep fun.

Conceptual Space
The presenters described the conceptual space that has supported the formation of the Green
Neuroscience Lab. This includes their affiliation with the NeuroLinx Research Institute (https://
neurolinx.org/), which is a non-profit research institute that began operations in 2011 and whose
mission is to further neuroscience research within a framework of open scientific collaboration.
The institute addresses this mission by “building bridges between researchers, creating unique
collaborations, linking diverse scientific data and information, and supporting high-risk but
potentially high-reward research projects.” The mission is summarized in the moto “Liberating
Science”.

Physical Space
Dr. Lam and Dr. Ohayon then discussed how they have worked to create a physical laboratory
space that reflected their principles. This includes no animal testing, minimizing the use of
hazardous materials for studies, and a practice of non-hierarchy (e.g., encouraging college
student researchers to develop their own questions and research studies which is rare at the
undergraduate level). They also described how the laboratory is the first net zero neuroscience
laboratory powered with solar energy, how much of the equipment and furniture were reclaimed
or repurposed, and how they increased green space in a primarily industrial area.

Research
The speakers then presented examples of their research projects. Dr. Lam outlined the Open
Atlas of Brain Metals project (http://greenneuro.org/atlas/) that she and Dr. Ohayon are working
on as part of the Green Neuroscience Laboratory. Using X-ray fluorescence imaging at the
Stanford Synchrotron Radiation Lightsource, they are developing an open access atlas that will
offer researchers new information on the distribution and function of metals in the human brain.
Metals contribute to the basic architecture, function and plasticity of neural systems. By
constructing this digital repository, they are documenting the diversity across and within socalled
“typical developing” brains as well as conditions such as epilepsy and Williams
Syndrome. The hope is to help identify the role of metals in the brain in order to understand how
their distributions in brain structures contributes to function. By using synchrotron imaging they
have avoided many commonly used carcinogenic substances in assessing brain anatomy,
although a possible environmental trade-off is the large amount of energy that this method can
consume (though relatively brief in duration). Beyond the accuracy and environmental benefits,
the method also has additional scientific advantages in that it enables other histological
techniques to be applied post-imaging.

Dr. Ohayon also outlined his neurocomputational research on neural activity, cognition and
epilepsy. He described how he explores the effects of changes in the structure of large networks
on their function. He also illustrated how he has thought about these models in the context of the
environment and autonomous agents. As an example, he presented an experiment where
embodied models (robots) where evolved from a seizure-like condition to a point where they
could move around and avoid obstacles.

Question and Answer Period:
The discussant, Martha, began the question section of the event by asking Drs. Lam and Ohayon
three questions (paraphrased in the following section):
Martha - In Science and Justice we have discussed this idea of “slow science.” It is a concept
that we have taken from the idea of fast food as something that is output quickly, but has all
types of negative consequences ecologically and socially. We have thought about the possible
benefits of moving away from a fast-paced competitive atmosphere or a ‘publish or perish’
model to allow for time for experimental projects, potential false starts, the ability to “digest” the
science, and a more positive workspace. In what ways might that concept resonate, or not
resonate, with the Green Neuroscience Lab?

Ann and Elan - The analogy definitely works in many senses, in that there is definitely too
much rote research being conducted, with little thought of the impact both within neuroscience
and on society. Also, pressures to finish study quickly and considerations of how easy it will be
to publish can bias both the approach and results. Proper experimental design should allow for
thinking space and serendipitous discovery to occur. On the other hand, while we have to give
space for things to happen slowly, we must also recognize that sometimes things happen very
fast and great realizations can occur quickly. So we need to be flexible and act upon rapid
developments in our studies and within neuroscience as a field.

They agreed that concept resonates at many levels and that the means of our practices should
reflect our principles. In that sense it is very important to give things time to simmer and avoid
"fast food" science. On the other hand, they also remarked on the urgent need to recognize and
respond to the dangerous trajectories in neuroscience research. The detrimental consequences are
speeding up and require fast responses to mitigate the damage. This urgency means that
researchers who care about these ethical issues need to respond quickly and strongly.
There have also been some positive developments. For example, there is an important move
away from ‘publish or perish” that is now allowing for more inclusive and thoughtful science. In
fact, some of the most momentous and rigorous results have recently been disseminated in nontraditional
manners. An example is the solution to the Poincaré conjecture by Grigori Perelman
who posted the proof online (on arXiv).

There are also many troubling social justice dimension to the competitive "fast food" model. For
example, talented immigrant scientists are pressured to perform under the threat of losing their
jobs and visas. This can turn marginalized people against each other as well as potentially
compromising the science and ethics. In the US, the problem is exacerbated by the lack of
universal healthcare, so people may overwork themselves or cut corners because they are afraid
of losing their health insurance benefits. Also, researchers who want to keep their positions and
health insurance in order to protect their families will often sacrifice time with their families.
Women in particular may feel the pressure to choose between work and family. The absence of
social safety nets can also lead to researchers that are less likely to take chances. Dr . Ohayon
remarked that this is exceedingly ironic since the lack of socialized health care can actually
hamper the entrepreneurial spirit so celebrated by industry.

Martha - mentioned the work that she did with Ruth Müller that found women postdocs had an
enormous amount of pressure to make sacrifices and felt they lacked role models for women who
combined their work as scientists with family obligations.

Ann and Elan - This is certainly an important issue. As mentioned, there is a lot of pressure,
especially on women that can pit research against family. This is very common at the
postdoctoral level. However, while recognizing the problem, we also should carful about reifying
the issue. In many ways academia is much more flexible than other occupations and can offer a
wonderfully rich and fulfilling life. It is important that the positive stories and aspects be told as
well so that women are encouraged and supported in pursuing careers in science and academia.

Martha - Says she was struck by their use of language, namely the lab principle of encouraging
“rich narratives.” Her work is on narratives in science, so she curious about what inspired that
way of framing their work and what does the idea of narratives might mean to them

Ann and Elan - Talked about the importance of listening to people’s stories in order to inspire
and contextualize their research as well as for understanding the brain in context. SAND, for
example, has had speakers such as a woman whose sister has epilepsy and a native elder. These
narratives have often been amongst the most engaging presentations. These stories clearly
affected the basic researchers and clinicians at the conference. Focusing on the telling of stories
also allows for a conversation with society and invites people to participate.

They also mentioned that there is the need for more artists and writers to partner with scientists
on interpreting some the issues and depicting how science impacts peoples’ lives. It is often
artists that perceive and interpret the impact long before scientists have even begun the research
(as per examples from literature at the start of talk).

Martha - What kind of limitations have they encountered trying to implement Green Neuro?

Ann and Elan - The principles have eliminated a lot of the traditional funding sources given that
the lab does not accept funding from military or industry (e.g., pharmaceutical). They have also
met many incredible researchers that they would have liked to work with but unfortunately their
research was ungreen either in their funding and/or outcomes. For example, research that is
partially focused on the development of military devices or patented medical treatments.
However, although the funding has been an issue, in some ways the limitations have also led to
creative solutions and opened up new possibilities. For example, much of the furniture and
equipment was acquired though Craigslist which was both green and affordable. This also led to
connecting to interesting individuals in the community such as environmental architects and
engineers. The SAND conference has been an inspiration in this regard as it has run for many
years with a zero budget. The conference takes place in academic public spaces which helps
brings researchers from many fields together while nurturing connections with public institutes.

Andrew Matthews - asked how they came up with the concept of an “atlas” to describe their
repository of information?

Ann and Elan -  The term "atlas" is actually taking on many meanings in neuroscience. It's a very
active domain. There have been very energetic discussions about this at the lab and with
collaborators. The debate is quite lively. One of the most interesting connections is that the lab
received a generous donation of vintage atlases from the Neurosciences Institute in La Jolla, CA.
This has given the discussion a certain historical perspective and has led to many of the
questions. Is the description of a single individual an atlas? Should an atlas be made up of a
collection that reflects a population? What about the ethics of collecting the data (in humans and
other animals)?

Magdalena Górska - Thanked the speakers for coming and said it is rare that scientists think so
deeply about the social issues of science.

Andrew Matthews - Thanked the speakers and said that what they are doing is a very
inspirational project.

Discussion continued after the formal event and future collaborations are being planned.