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

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

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

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

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.

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.

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.

Ethnicity and Security: The Wen Ho Lee Case

Science & Justice Working Group Meeting with Jeffrey Bussolini (CUNY)

The treatment and legal case of Taiwanese-American physicist Wen Ho Lee is a remarkably instructive account of the troublesome intersecting dynamics of ethnicity and security in US national security institutions on the eve of the September 11th transformations. Perhaps most shocking is that some of the same techniques that became notorious after 9/11 (sensory deprivation, techniques of humiliation through shackling and temperature control) were previewed in Lee's treatment. In this respect, and in the mechanics of the case itself which are still poorly understood, the Lee case serves as an invaluable instance of what Foucault would call "the history of the present" in which the techniques of the post-9/11 security state were not simply created out of whole cloth, but were the amplifications of practices that had already been developed within US security and justice systems.

Continue Reading Ethnicity and Security: The Wen Ho Lee Case

Genomics Gets Personal: Property, Persons, Privacy

Introduction by David Haussler, Director of the UCSC Center for Biomolecular Science & Engineering and the UCSC Cancer Genomics Hub). 

Panelists:

Gail P. Jarvik, M.D., Ph.D., Head, Division of Medical Genetics, The Arno G. Motulsky Endowed Chair in Medicine & Professor of Genome Sciences, University of Washington Medical Center

Robert Cook-Deegan, M.D., Research Professor, Genome Ethics, Law & Policy, Duke University, Director, Center for Genome Ethics, Law and Policy, Duke Institute for Genome Sciences & Policy, Author of Gene Wars: Science, Politics and the Human Genome Project

John Wilbanks, Director, Sage Bionetworks, Director, Consent to Research project (CtR), Co-founder of the Access2Research petition
Senior Fellow in Entrepreneurship at the Ewing Marion Kauffman Foundation

Ryan Phelan, Founder, and former CEO, DNA Direct by Medco
Board member, Personal Genome Project, Founder Direct Medical Knowledge, Founding Executive Director of Planetree

Roundtable discussion moderated by Jenny Reardon, Director of the Science & Justice Research Center and Professor of Sociology at UC Santa Cruz.

Tremendous advances in sequencing technologies have transformed genomes into a valuable new source of data about the biology of individuals. While these new data promise a revolution in medical care, more immediately they pose fundamental new ethical, social and legal questions about ownership and control of our bodies and their molecular constituents.

• To what extent are genomes the property of persons, and thus subject to their control?

• To what extent should genomes be shared in pursuit of medical breakthroughs or profit by others?

Please join a panel of experts to explore these questions and offer insights on how we can advance personal genomics within ethical and legal frameworks that respond to these fundamental questions about individual rights, property, and the nature of public goods in a genomic age.

A  special event featuring a panel discussion on the ethical and legal questions around personal genomics, hosted at UCSF Mission Bay Campus
Byers Auditorium at Genentech Hall, 600 16th Street, San Francisco.

"Genomics Gets Personal: Property, Persons, Privacy"
SJWG Rapporteur Report
27 September 2012
Reporter: Martha Kenney
“Genomics Gets Personal: Property, Persons, Privacy” took place at UCSF’s Mission Bay
Campus on September 27th, 2012. Renowned Bioinformatics researcher David Haussler, in his
introduction to the event, explained that in the next phase of genomics research that the hardest
challenges will not be the technological or medical problems but the social issues. He suggested
that interdisciplinary initiatives like the Science & Justice Research Center are necessary to
investigate and address these social issues. Jenny Reardon, the chair of the proceedings,
introduced the topic of personal data by reminding the audience that not long ago there was no
such thing as “personal data.” We did not grow up with the idea of personal data, but in the age
of Facebook our lives are not only mediated by data but our bodies have become new, potentially
valuable, sources of data. The Science & Justice Research Center has been experimenting with
bringing novel groups of interdisciplinary researchers together to address these novel problems.
This event convened a panel of four world-class medical and legal experts from the public and
private sectors around two questions unique to problems that emerge from the rise of “personal
data”:

• To what extent are genomes the property of persons and subject to their control?
• To what extent should genomes be shared with others for the purpose of medical
breakthroughs or profit?

Prof. Reardon posed a question to each of the panelists that drew on their unique perspectives on
personal genomics. Through the course of the discussion it became clear that the speakers had
differing opinions on key issues that were based in their personal experience with genomics and
how they were positioned in the field. For example, on the topic of citizens having access to
their own genome sequences for diagnostic purposed, there were critical difference between the
different responses.

Gail Jarvik spoke about her practice of finding actionable genes for clinical intervention through
targeted exome sequencing rather than genome sequencing. This approaches is less expensive
and doesn’t return results for genetic conditions that clinicians are not testing for. The data is not
returned to the patient or their doctor because of the risk of misinterpretation. John Wilbanks,
Director of Sage Bionetworks, however, argued that patients have a right to their data and that
taking the data out of the hands of academics needs to become a more viable alternative.
Consumer health advocated Ryan Phlean said that that the opinion that genetic data is too
dangerous and confusing for public consumption is flawed. When there are good ways to
interpret genomic data accessible online genomic data will be useful to the public. Robert Cook-
Deegan, Professor of Genome Law, Health and Policy at Duke University, agreed that people are
becoming less tolerate to the older model where the doctor acts as an intermediary between
medical tests and the patients, but unmediated access to data for patients is only one of the
competing models doctors have to choose between as genomic sequencing becomes more
prevalent.

Questions of informed consent and patients as research partners also played a prominent role in
the discussions. Robert Cook-Deegan referenced the article, “Glad you asked: Participants'
Opinions of Re-Consent for dbGaP Data Submission” as evidence that patients prefer to be asked
when their data is used for a purpose different than the original study, but once asked they are
positively inclined to share their data. Gail Jarvik, who was one of the co-authors on that article,
cautioned that the patient sample was very homogenous, containing mostly white middle-class
Americans. The question of homogeneity is an important one for both scientific and ethical
questions. John Wilbanks joked that scientists he worked with thought they would “find the
Apple gene” because their sample population was all affluent, white men who are the first to buy
the next iPhone. While Ryan Phlean suggested that this is the demographic of “early adopters”
and will change as the technologies become more ubiquitous, Robert Cook-Deegan cautioned
that we should revisit the connection between genetics and eugenics in this context. Different
groups are and will be experiencing the risks and benefits of these technologies in different ways.
This point was echoed during the open question period by Kate Darling, a graduate student in
Medical Sociology at UCSF, who noted that people are drawn into medical contexts in highly
varied, uneven, and contradictory ways. A prison inmate experiences genomics differently that
someone who pays 23andMe for genomic sequencing. Paying attention to this uneven landscape
of medicalization is key for doing bioethics in an age of personal genomics.

It was clear from the questions and varied responses that the territory of personal genomics is
still very much in formation. Questions of sharing and privacy, consent and re-consent, diversity
and inequality, paternalism vs. partnership vs. personal knowledge, and who should profit from
genomic data are currently at stake and could be addressed in multiple different ways. Forums
such as this event are an important part of building a future for personal genomics that takes into
account the social issues that arise with the new genomic technologies and is informed by
different situated (sometimes contrasting) perspectives.