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.

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


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 (
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://, 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

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.

The speakers then presented examples of their research projects. Dr. Lam outlined the Open
Atlas of Brain Metals project ( 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.

Science & Justice Announces Artists in Residence

The Science & Justice Research Center is pleased to announce a new Artists in Residence program for undergraduate students, supported by the OpenLab, SPARC and the Arts at UCSC.

This year we are featuring two artists, Patrick Appleby and Kiko Kolb. Patrick and Kiko will be engaged in Science & Justice Programming throughout the year. They will produce material to be displayed in our rotating gallery and assist our graduate student Fellows with realization of their projects. Their residencies supply them with materials and lab fees for projects that capture the major themes of the Center’s research.

Patrick  is a fourth year Art and History of Art & Visual Culture undergraduate from Benicia, CA. He works mainly in the media of painting and printmaking though his concepts are influenced by photography and the technologies of vision. He has an interest in experimenting with and exploring the visual image and the role of human subjectivity in technological mediations of the world. Recently his projects have aimed to connect photographic and virtual realities in different ways. By exploring the ways in which the world is represented visually he aims to better understand the role of human observation in an increasingly technological world.

His residency is co-sponsored by the OpenLab Network. This is directed by Professor Jennifer Parker and targets a complex education issue of national significance regarding the ability of art and science researchers to collaborate on research endeavors. It aims to help change the current status by providing shared research facilities and create a network for collaborative discourse fueled by academic communities, arts and science communities, and industry.

Kiko is a 4th year art student at the UCSC Art Department working with a range of contemporary print methods and specializing in digital printmaking. She is also interested in installations, especially large scale, and site specific environments, as well as other areas of intermedia that combine print, digital elements, and sculpture. Kiko is also very inspired by the collaborative aspect of Art and the innovation it facilitates, leading to her work for the past year to create collaborative art opportunities at Stevenson’s annual Rock n Roll on the Knoll concert, as well as becoming more involved with the print studios on campus. Kiko’s work reflects ideas of youth and digital culture and how it relates to societies ways of thinking, as well as the playful abstract renditions of her own world.

Her residency is co-sponsored by the Social Practice Arts Research Center (SPARC). This is co-directed by Professors Dee Hibbert-Jones, EG Crichton and Elliot Anderson and fosters knowledge exchange and project building between artists, scientists, the public and others with a vision towards active social and environmental change. Working across disciplines, it aims to engender and support collaborations and projects that have a local, national or international impact on the public sphere.



Climate Data, Dams, and Water Demand: A Cross-Disciplinary Conversation

Science & Justice Working Group Meeting

November 27, 2012, 4:00-6:00pm

Engineering 2, Rm. 599


Ruth Langridge: Legal Studies/ Politics Department, UCSC

Lori Pottinger: International Rivers Network

Bruce Daniels: Earth and Planetary Sciences, UCSC; Soquel Water District Board of Directors

Decades of anti-dam activism around the world have generated a greater public awareness of the social and ecological consequences of large dams. But urbanization and increasing fears over the hydrologic effects of climate change have slowed this anti-dam momentum. Climate models play a crucial role in the decision-making process, meaning that an understanding of the limits and possibilities of these models is more important than ever. This event addresses this problem by bringing together a water policy analyst, an advocate for healthy rivers, and a climate modeler to explore the relationship between hydrologic climate modeling and regional water resource planning. The event will explore how data are constructed, analyzed, and used to make water resource planning decisions; what challenges arise in this process for scientists, policy makers, and everyday people in affected watersheds; and what possibilities for social and environmental justice arise from a better understanding of these factors.

We will hear from Ruth Langridge, an expert on water law and policy in the Politics and Legal Studies Departments at UCSC; Lori Pottinger, an advocate for healthy rivers with the International Rivers Network in Berkeley; and Bruce Daniels, a PhD Candidate working on hydroclimatology in the Earth and Planetary Sciences Department at UCSC and a member of the Soquel Water District Board of Directors. The event will explore how data are constructed, analyzed, and used to make water resource planning decisions; what challenges arise in this process for scientists, policy makers, and everyday people in affected watersheds; and what possibilities for social and environmental justice arise from a better understanding of these factors.

Co-Sponsored by the UCSC Department of Anthroplogy

The Human Code: Race and Information in a Genomic Age

The Human Code
Race and information in a genomic age

By Ian Evans 11/15/12

City on a Hill Press

When UC Santa Cruz researchers and graduate students published on July 7, 2000 the first record of a person’s whole DNA sequence, or genome, the field of genomics was still young. Utilizing a UCSC designed online DNA database, this international effort cost over $100 million and was known as the Human Genome Project (HGP).

That project changed the world.

“[The HGP] is the first time that humanity got its glimpse of the DNA message that had been passed on for so many aeons,” said David Haussler, UCSC professor of biomolecular engineering and director of The Center for Biomolecular Science and Engineering. Haussler introduced “Genomics Gets Personal: Property, Persons, and Privacy,” a recent panel on genomics which took place at UC San Francisco on Sept. 27.

Hosted by UCSC, panelists discussed the use of genetic information and its effects on society today.

Haussler was at the center of UCSC’s research in the HGP and its success in providing free genomic information online. Since then, the speed and cost of sequencing, or decoding, the human genome code of four proteins — A, T, C and G — has improved exponentially.

“The field of genomics and personalized medicine is moving at an extraordinary rate,” Haussler said. “What cost 12 years ago [an] excess of $100 million next year will cost $1,000. One hundred thousand times improvement in little over a decade … the social implications of that are enormous.”

Since the HGP, which was officially completed in 2003, UCSC has continued its renowned work in genomics, coming out with world famous research and technology including the Cancer Genomics Hub (CGHub), a database developed by Haussler to store genomes of cancerous tumors to better understand what causes different types of cancer and how to treat them.

“Genomics is a huge subject at UCSC,” said Brandon Allgood, UCSC alumnus and director of computational science at Numerate Inc., a drug design and technology company. “It is a world leader in some respects.”

Allgood said one of the reasons for the university’s leading role in the field is its commitment to interdisciplinary studies, especially between the sciences and social sciences. Jenny Reardon is at the forefront of connecting those subjects.

Reardon is a faculty affiliate of the UCSC Center for Biomolecular Science and Engineering (CBSE) and the creator and co-director of the Science and Justice Research Center at UCSC, a community dedicated to bridging the gap between the sciences, social sciences and humanities. She is the author of “Race to the Finish: Identity and Governance in an Age of Genomics,” which covers the history and controversies that encircled one of the most controversial social issues in genomics’ past, the Human Genome Diversity Project (HGDP).

Separate from the HGP, the HGDP aimed to record the genetic variation within the human species by sampling genetic information from isolated human populations. By researching isolated populations, researchers hoped to track humanity’s early movements and settlements to learn more about the origin of the human species, develop drugs specific to diseases affecting certain populations and to study the enormous amount of diversity that exists among humans.

The project was quickly challenged by indigenous groups who were concerned that their genetic information, separated and categorized, would be misused in a way that would have a negative impact on indigenous communities. Justified by a history of past oppression and inequality, many indigenous peoples were concerned with the HGDP’s overall mission, communication efforts, as well as other concerns.

“In the long history of destruction which has accompanied western colonization we have come to realize that the agenda of the non-indigenous forces has been to appropriate and manipulate the natural order for the purposes of profit, power and control,” wrote members of the Indigenous Peoples Council on Biocolonialism, a meeting of indigenous leaders from the United States, several Central and South American countries and Canada, according to the Indigenous Peoples Council on Biocolonialism’s website. “We particularly oppose the HGD Project which intends to collect, and make available our genetic materials which may be used for commercial, scientific, and military purposes … We hold that life cannot be bought, owned, sold, discovered or patented, even in its smallest form.”

Reardon said the project came under scrutiny for, among other things, biocolonialism and racism.

“It was called the vampire project, a project interested in sucking the blood of indigenous people more than it was interested in their livelihood,” Reardon said, acknowledging the painful history of colonialism and eugenics, the widely rejected practice of promoting certain people or traits and rejecting, sometimes violently, less desirable people or traits. “The trauma of the past has been strong.”

Reardon said this was not the intention of the scientists involved and that the scientific community has worked hard to address these concerns.

“These well meaning scientists, many of whom, like Mary-Claire King, were committed to issues of human rights. Bob Cook-Deegan was a member of Doctors Without Borders,” Reardon said.

Robert Cook-Deegan is a research professor in genome ethics and law and policy at Duke University and author of “The Gene Wars: Science, Politics and the Human Genome.” When the HGDP first began, Cook-Deegan played a major role in the project and in one of its first controversial encounters with society.

“We made one pretty big mistake in the original paper that proposed doing what became known as the HGDP,” Cook-Deegan said. “I think I’m the person who put the term ‘vanishing opportunity’ into the title of that paper, and in retrospect that was a pretty stupid turn of phrase.”

Cook-Deegan said it was unintentional that the term implied that collecting data from dying populations was more important than actually helping them survive.

“The foreseeable consequence of that terminology ‘vanishing opportunity,’ was that [people thought we believed] it was more important to study human origins than to right the wrongs and to focus on human rights. And of course we don’t believe that, but we didn’t explicitly say that, and we should have,” Cook-Deegan said. “I did view that as a mistake.”

Even as the field of genomics still reels from its controversial past, it continues to pervade society and bring to light new concerns.

With the completion of the Human Genome Project, the cost of sequencing genomes dramatically decreased as technology became cheaper, faster and better. This has allowed more and more data to pour in, but one of the biggest questions posed at the panel and that genomics faces today is: who gets to look at all that information? Should it be exclusive to the experts or be open to everyone?

“There are two philosophies,” said Cook-Deegan, who was one of the four panelists. “One is, share only the stuff that we kind of know how to interpret now, and that is under the framework of ‘this is a great big genetic test’ … People who are used to the way of the web, and the way that we think about information now don’t like that because there is an intermediary there who is deciding what information is shared with the individual.”

Ryan Phelan, another panelist and the creator of DNA Direct and founder of Direct Medical Knowledge, what became the backbone to the online medical site, WebMD, said people have never had open access to information in such a way.

“What has happened is the internet. What took 30 years to get WebMD to be ubiquitous, it is now going to take us 5–10 years to get genomic information ubiquitous,” Phelan said. “There’s a whole continuum here of information to the patient, to the doctor, for decision making or for research.”

Panelist Gail Jarvik, the head of the department of medical genetics at the University of Washington School of Medicine, said in her experience, access to uncertain or unknown genetic information can be harmful to patients.

“I have had very unhappy experiences with just giving people variants of uncertain significance back for breast cancer and having their doctor decide to take off their breast,” Jarvik said. “Even though I very specifically said, this is likely to be benign, I don’t think this is a breast cancer causing mutation, the doctors say well you have breast cancer, you have a mutation in your breast cancer gene, off with your breast.”

However, John Wilbanks, a panelist who runs the Consent to Research Project, which gives people an easy way to donate their health data to a database for researchers to use and analyze, said although there will be mistakes as genomics moves forward, the data will be public with or without the consent of experts.

“As people who are sick or have family members who are sick can access these technologies outside of the institution, they’re going to,” Wilbanks said. “A lot of bad decisions are going to be made as a result of that but if you are not part of the existing clinical research system anyway, this is a ray of hope.”

More progress can be made by making genomic data easy to donate and available to the public on free databases, Wilbanks said, than by allowing only a select few scientists to access it.

However the information is accessed, there is money to be made in the future of genomics. Drug companies are already scrambling to get ready to provide customers with sequencing technology and drugs developed to be effective for genomes.

Phelan spoke about the Chinese genome sequencing company BGI–Shenzhen’s acquisition of Complete Genomics, another genome sequencing company based in Silicon Valley. He said corporations are already bracing for the future of genomics.

“These are companies, large companies making big plays in the translation of these technologies into the consumer market,” Phelan said.

As far as the future of personalized genomics goes, Cook-Deegan said he is cautious about making predictions. People will get their genomes sequenced, but why? And what will happen to that information? That, he said, remains to be seen.

“We’ve got all these reasons [for getting our genes sequenced]. We’ve got pharmacogenetics as a reason, we’ve got ancestry as a reason, we’ve got genetic risk of a foreseeable condition as a reason to get your genome done, and you’ve also got the fact that it’s a cool thing to talk about at cocktail parties,” Cook-Deegan said. “That’s what’s driving it right now, but we’re going to move beyond that.”

As for the social issues, Haussler said there will continue to be important debates about how genomics can best be integrated into society.

“I can only do my research in the context of society,” Haussler said. “It is absolutely necessary that we have a social contract — that society understands the value of the research so that it is maintained, funded and enabled. A lot of this, from a society’s point of view depends on what the benefits of genetic research are. As those grow, I think that a compromise will become more obviously necessary. When personal genomes are really saving lives and really helping people live fuller, longer, better lives, healthier lives, compromises will be made on some of these social issues.”

*In the original print version of this story, Mary-Claire King’s name was spelled Mary Clair King. This was corrected for this online version*

We are all lichens: How symbiosis research has reconstituted a new realm of individuality

Scott Gilbert (Howard A. Schneiderman Professor Swarthmore College)

UCSC Philosophy Department Colloquium

Thursday, November 15, 4 – 6 pm. Humanities 1, rm. 210

The notion of the “biological individual” is crucial to studies of genetics, immunology, evolution, development, anatomy, and physiology. Each of these biological sub-disciplines has a specific conception of individuality, which has historically provided conceptual contexts for integrating newly acquired data. During the past decade, nucleic acid analysis, especially genomic sequencing and high-throughput RNA techniques, has challenged each of these disciplinary definitions by finding significant interactions of animals and plants with symbiotic microorganisms that disrupt the boundaries which heretofore had characterized the biological individual. Animals cannot be considered individuals by anatomical, or physiological criteria, because a diversity of symbionts are both present and functional in completing metabolic pathways and serving other physiological functions.

Similarly, these new studies have shown that animal development is incomplete without symbionts. Symbionts also constitute a second mode of genetic inheritance, providing selectable genetic variation for natural selection. The immune system also develops, in part, in dialogue with symbionts, and thereby functions as a mechanism for integrating microbes into the animal-cell community. Recognizing the “holobiont”—the multicellular eukaryote plus its colonies of persistent symbionts– as a critically important unit of anatomy, development, physiology, immunology, and evolution, opens up new investigative avenues and conceptually challenges the ways in which the biological sub-disciplines have heretofore characterized living entities.


History of Consciousness Department, Center for Cultural Studies, and Science & Justice Working Group

When Does Personhood Begin? The Science and the Rhetoric

Renowned developmental biologist Scott Gilbert (Swarthmore) joins us to discuss the science and rhetoric of personhood from a cross-disciplinary perspective. The argument that a potential human adult should be given the status of "person" from the moment of conception is being frequently made by people who wish to make abortion and human stem cell research illegal. While "personhood" is a cultural and not a scientific category, biology is often being used to justify such claims. Biologists, however, have not reached consensus on this issue, and this talk will discuss some of the places where different groups of biologists have claimed "personhood" begins. These include fertilization, individuation/gastrulation (when the embryo can no longer form twins), the acquisition of the human-specific EEG pattern, and birth. The rhetoric surrounding the fertilization issue concerns the photographs of prenatal life and the cultural representation of DNA as our soul or essence.

Cosponsored by the Molecular, Cellular, and Developmental Biology Department

November 13, 2012 | 4:00-6:00 PM |Engineering 2, Room 599

Scott Gilbert, "When Does Personhood Begin?: The Science and the Rhetoric"
SJWG Rapporteur Report
13 November 2012
Rapporteur: Martha Kenney, History of Consciousness
Scott Gilbert (Swarthmore) spoke to us about public misconceptions about the science of when
life begins. He adapted this talk from an invited presentation he gave at The Vatican in 2007. He
raised a number of erroneous “facts” that give people the impression that scientists support the
idea that life and therefore personhood begins at fertilization. For example, many people believe
that all the instructions for development and heredity are already present in a fertilized egg.
More broadly DNA is often presented as tantamount to a “soul” or “essence.” To illustrate this
point Gilbert showed us car ads that were predicated on a deterministic concept of DNA. A
Toyota, for example, was advertised as having “a great set of genes.” In order to counter this
myth, Gilbert described new research from epigenetics and microbiome biology that shows many
of our fundamental bodily and behavioral characterizes are determined by the environment, not
just by genes.

He also discussed the misconception that an embryo is an autonomous entity and fully protected
inside the womb, explaining that for every 20 eggs fertilized only 6.2 become a fetus (at 8
weeks). Furthermore teratogenic compounds threaten fetal development and viability (Gilbert
argued that reducing teratogenic compounds in the environment might be a common project for
people on both sides of the abortion debate). The popularity of Lennart Nilsson’s photographs of
fetuses (actually abortuses) contributes to the misconception that fetuses are autonomous entities
by showing them floating outside of a woman’s body. The final myth that Gilbert addressed is
that scientists agree when personhood begins; there is, in fact, no such consensus and, he argued
that the question of personhood may not be a scientific question at all. However, Gilbert felt that
science does have something important to say about embryo/fetus development, which should
not be misconstrued in public discourse.

During the Q&A period Jenny Reardon wondered how biologists can participate in debates
around abortion and embryo research without calling upon science as the authoritative discourse.
I.e. “Science says x, therefore x.” Martha Kenney followed up on this question by asking
Gilbert: “If you consider images that are contributing the public discourse about embryo research
and abortion to be scientifically misleading, what images do you feel better represents your
knowledge of embryos and fetuses that is grounded in your own experience as a developmental
biologist.” Gilbert described a “gorgeous” colored MRI image he used for the front cover of his
textbook Developmental Biology; he explained that he had to keep telling the publishers to zoom
out on the image so that the fetus would not appear to be floating in space. Listening to Gilbert’s
passion for this image offered us a way to think out of the “science says” dilemma and into a way
of doing a politics of representation from within our professional practices. Donna Haraway
commented that a central problem with the abortion debates was that both sides want to ensure
that persons were protected from death. She argued that death is not the greatest tragedy and that
we need to learn how to kill well (not just protect life). For Haraway, the politics were not (only)
in getting the science right, not only in the images and rhetoric we traffic in, but the ways that
entities are protected and made killable within these moral and scientific discourses. The Q&A
period opened up Gilbert’s talk beyond the question of what science has to say in the abortion
and embryo research debates, to wider questions of representation, ethics, and epistemic
authority in a complex social and scientific landscape.

Democracy Deluge: End Games of Science and Politics – Jenny Reardon

Jenny Reardon, Science & Justice Research Center Co-Director and Associate Professor of Sociology

Sociology Department Colloquium

Monday, November 26, 2012


301 College 8

Today ideals of participatory democracy that have long grounded Euro-American imaginaries of truth and freedom play important structuring roles in the natural sciences.  This represents a dramatic change for a domain of human activity that in the 20th century built its credibility largely through circumscribing itself as apolitical. While some celebrate these developments as part of the new spring for democracy, might this “unnatural” spread suggest a different reading?  This talk takes up this question through an analysis of a decade-long effort to render genomics democratic.  It explores what the rise of the “democratic genome” reveals about the limits of dominant narratives of “science and politics,” and what it might tell us about contemporary practices and conditions of democracy, justice and knowledge.