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.

 

 

Nov 27, 2012 | 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

Panelists:

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*

Nov 15, 2012 | 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.

COLLOQUIUM CO-SPONSORED BY:

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

Nov 13, 2012 | 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.

Nov 08, 2012 | 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

12:30-2:00PM

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.

Oct 27, 2012 | Rethinking Development in Light of Climate Change

Interdisciplinary Development Working Group

Saturday October 27, 2012

9AM-5:30PM 

Oakes College

Invited speaker: Dr. Hallie Eakin, School of Sustainability, Arizona State University.

Increasingly climate change impacts have called into question the sustainability of development policies and practices. At the same time, development efforts share many of the goals of climate change adaptation and mitigation. Scholars and practitioners in both areas have recognized the need for more collaboration across these two fields to address the critical challenge of integrating development planning and climate action in ways that promote positive synergies and avoid past failures. This conference brings together scholars from a range of disciplines to explore to what extent the awareness of climate change causes and impacts is transforming development theories and practices.

For more information about this event please click here.

About the Interdisciplinary Development Working Group (IDWG): IDWG at UCSC provides a forum for faculty and students from all disciplines to discuss issues of development.  Our sessions center around members’research, close readings of selected texts, and presentations from invited guests. We engage with several of the sub-themes in development such as rural/urban dynamics, environmental change, social justice, natural resource management, and international  governance.

This event is made possible through the support of CGIRS, the Science and Justice Working Group, the Sociology Department and the Environmental Studies Department at UCSC.

 

Please direct any questions to idwg@ucsc.edu

Oct 25, 2012 | Enacting Multiple Salmon: Conversation across disciplinary practices

Science & Justice Working Group Meeting

October 25, 2012

2:00-4:00 PM

Oakes Mural Room

This event brings together different accounts of salmon, some from social scientists and some from natural scientists who each will describe, and reflect upon how ‘their’ salmon is constituted, first in describing their particular research on questions of wild and domestic salmon in the US, and in then in a public conversation with each other and with the audience. We will hear from Robin Wapless, from NOAA in Seattle, from Rachel Barnett-Johnson from the Biology department at UCSC, from John Law a sociologist at the Open University in the UK, and from Marianne Liene, an anthropologist from the University of Oslo. Together, these scientists know salmon through widely different practices, from salmon hatcheries in California, to aquaculture sites in Norway, from laboratories, from textbooks, and from scientific articles and environmental regulation.

What are the defining traits of the salmon, and what distinctions do they look for? How were they attracted to salmon, and what are the practices through which they come to know salmon? What material, historical, and perhaps ethical entanglements are involved in the practices through which salmon is rendered known?

A special focus is on the notion of the wild; and its semi-domesticated other: What is a wild salmon, and how is it different from a hatchery salmon or a farmed salmon? How can we contribute to an environment that accommodates and nurtures different kinds of salmon?

This is not so much a debate about what salmon really is, as a dialogue across disciplines about all the different forms that are involved in our shared, but different, efforts to know the world we all inhabit.

Co-sponsored by the University of Oslo and the UCSC Environmental Studies and Anthropology Departments.

Oct 09, 2012 | 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 Oct 09, 2012 | Ethnicity and Security: The Wen Ho Lee Case

Sept 27, 2012 | 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.

ARCHIVE VIDEO

"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.