Jan 22, 2014 | Science and Justice in an Age of Big Data: Biomedical Privacy & Genomic Openness

Peter Yu, David Haussler and Jenny Reardon Discuss the Meeting of Biomedical Privacy and Genomic Openness

On January 22, 2014, the Science & Justice Working Group is hosting the first in a series of ongoing conversations about the unresolved issues raised by the recent push to expand efforts to collect and aggregate biological samples and data.  Jenny Reardon (Science & Justice Research Center Director and Associate Professor of Sociology) will facilitate a conversation between Peter Yu (incoming President of the American Society of Clinical Oncology and Director of Cancer Research (ASCO) at the Palo Alto Medical Foundation) and David Haussler (Director of the UCSC Center for Biomolecular Sciences and Engineering).  Peter Yu is a renowned medical oncologist and hematologist who has pioneered the advance of health information technology and its use to improve medical care.  The American Society of Clinical Oncology is the world’s leading professional organization representing physicians who care for people with cancer, and has played a lead role in erasing the stigma around cancer through developing and sharing knowledge that promotes cancer prevention and treatment.  In March of this year ASCO announced CancerLinQ, a major effort to collect data on hundreds of thousands of cancer patients to further advance cancer research and treatments. David Haussler is a pioneer in the field of bioinformatics whose group assembled and posted the first working draft of the human genome on the Internet, and is now innovating computer algorithms that will enable the use genomic data in the transformation of cancer care. In June of this year, Haussler and his colleagues announced a “Global Alliance” to foster the sharing of genomic and clinical data that CancerLinQ and other similar efforts require.  Yu and Haussler will discuss the challenges and opportunities raised by efforts to harness big data approaches to biomedical research.

As both Yu and Haussler are keenly aware, aggregating patient tissues and data raises entangled ethical and technical concerns. Finding the proper balance between personal privacy, medical and scientific autonomy, and equitable public benefits is at the heart of multiple recent controversies, including the sequencing and subsequent publication of Henrietta Lacks’ genome and neonatal blood biobanking.  These episodes make clear that the ability of informatic technologies to broaden and deepen the analysis of personal data raises issues that go to the heart of democratic governance. As a society, we have long associated personal control over our own bodies and privacy with full citizenship. Yet we also highly value transparency and knowledge sharing and view both as critical aspects of an open society, and as necessary components of scientific progress.  Today, as aggregated biomedical data become both more useful and more risky, we confront a difficult conflict between the value of privacy and the value of openness.

In an age of widespread social media usage, it is an increasingly familiar task to balance these values in our daily lives. Yet Science & Justice Research Center Director Jenny Reardon recently experienced this tension between privacy and openness in a surprising new way when she had an appointment with a physician at UC San Francisco (UCSF) and was asked to sign a UCSF Terms of Service Form.  That form told her that she “understood” that UCSF could use her tissues and/or medical data in research and that she had no property rights in these tissues/data. Despite being an expert in biomedicine, ethics and society, she found that she did not know what she was being told she “understood” in order that she might receive the medical services of UCSF. Reardon reflected on this experience in an article entitled “Should patients understand that they are research subjects?” that appeared on March 2, 2013 as the cover story for the San Francisco Chronicles Sunday Magazine Insight. This article circulated widely, and resulted in Yu contacting Reardon, establishing an ongoing conversation about the future of medical privacy, trust, and informatics.

At the heart of problem is a confusing mix of U.S. case law that denies ownership over one’s bodily tissues once they have left one’s body, medical privacy standards that require providers and researchers to inform you that they may use the tissues for research without directly requesting permission, and the speed at which medical advances are occurring. Given these conditions, it is more difficult than ever to know what one is agreeing to when one signs ubiquitous Terms of Service and informed consent forms.

The San Francisco Chronicle editorial board published an editorial along with Reardons article that suggested that the US Department of Health and Human Services revise its standards for medical consent. The editors proposed that the HHS standards foster full disclosure and clear communication with patients that more fully addressed questions of who will own and benefit from the collection and distribution of tissues and data.  They also published a response from UCSF’s Elizabeth A. Boyd, associate vice chancellor for ethics and compliance, and Daniel Dohan, associate professor of health policy and social medicine. Boyd and Dohan argued that the success of personalized medicine rests on relationships of trust between physicians, researchers and patients. They noted that UCSF supports revising consent standards, and cite the recent creation of EngageUC, an initiative on the part of UC physicians and faculty to develop new comprehensive guidelines.

Within a few weeks of this discussion in the San Francisco Chronicle, The New York Times published an Op-Ed by Rebecca Skloot (author of bestselling book The Immortal Life of Henrietta Lacks) that called for the development of international standards to protect the privacy of genetic data.  This call followed in the wake of the sequencing and publication of the HeLa cell line genome without the consent of the family of Henrietta Lacks, the African American woman whose cells were used to make the cell lines (again, without her consent). The New York Times followed with an article a few weeks later that discussed the concerns of Senator John D. Rockefeller IV, Chair of the Senate Commerce, Science and Transportation Committee, about patient privacy and the lack of transparency on who has access to patient health data. More recently the NIH’s chief Francis Collins personally worked with Lacks' family to develop a protocol for accessing the HeLa genome data that aimed to balance researchers’ needs with the family’s desire for privacy.

This discomfort bubbling up on the national stage has led to calls to change the Common Rule (the set of laws that govern federally-funded biomedical research in the U.S.), which currently allows for collection of tissues and data from patients as long as anonymity is maintained. It has become clear that anonymity in an age of openness is at best an uncertain policy instrument.  In addition to its technical limits, anonymity does not address the underlying concerns about who will be served by the mining of genomic and health data, and how concerns about privacy, property and justice can be addressed while fostering the creation of new knowledge needed to advance medical care.  Both Yu and Haussler are leading efforts that seek to do a better job fostering innovative research while attending to these fundamental ethical and policy issues, knowing that we need to do both if we are to advance cancer research and care.

The conversation between Peter Yu and David Haussler, facilitated by Jenny Reardon, will be the first of several dialogues planned by the Science & Justice Research Center that aim to help clarify these issues at stake in the evolving relationship between openness and privacy in the biomedical sciences.

Wednesday January 22, 2014 |4:00-6:00PM | Engineering 2, Room  599

"Science & Justice in the age of Big Data: A Conversation between Peter Yu and David Haussler"
SJWG Rapporteur Report
22 January 2014
Rapporteur Report by Lizzy Hare
This event was the first in a series of events on justice in an era of big data, one of the
Center’s themes for the year. The working group meeting was a conversation between Peter Yu
(incoming President of the American Society of Clinical Oncology and Director of Cancer
Research at the Palo Alto Medical Foundation) and David Haussler (Director of the UCSC
Center for Biomolecular Science and Engineering) about genome data and the future of cancer
research. Julie Harris (Assistant Adjunct Professor at UCSF, Institute on Health and Aging;
Staff Scientist at Kaiser Permanente Division of Research; and Associate Director of the Center
for Translational Genomics and Ethics) provided commentary. Science & Justice Center
Director Jenny Reardon moderated the conversation and introduced the panelists.

Reardon’s introduction provided an overview of some of the concerns that the working
group hopes to pursue with this series. Genome research is seen as powerful, and cancer
research can now studies the genomic changes that occur during the development of cancer. The
techniques that were developed in Haussler’s lab to understand the human genome are now being
used to think about cancer and evolution. This kind of genomic research would benefit greatly
from additional data that could be collected from cancer patients, but doing so raises ethical,
epistemological, and infrastructural questions. As a society, we have yet to figure out what to do
with big data. At present we mostly collect data of unknown significance, but there is no clear
precedent for who governs it, how to store it, or how to make sense of it. Who pays to store it?
Who gets to work with it and try to make sense of it? As the first of many working group
meetings to discuss this issue, the goal for this meeting was to outline which of these questions
needs further discussion.

Peter Yu spoke first, speaking from the perspective of a doctor practicing clinical
oncology. He described the efforts of the American Society of Clinical Oncology (ASCO) to
accelerate learning and analysis through computerized health care. They envision a rapid
learning system model, which would allow clinicians to generate new data and better models
while treating patients, by incorporating data from clinical practice instead of just clinical trials.
Such a system would require that patients and doctors be willing to share data, and it presents
problems for managing data, such as standardizing it and safeguarding it in a centralized
repository. The organization is still in the process of funding these efforts, but they are trying to
address these ethical and epistemological questions before they arise.

David Haussler followed up by first thanking Yu for his organization’s efforts, which he
sees as a tremendous boon to cancer care. Speaking from the point of view of a data scientist,
Haussler argues that big data is absolutely necessary for cancer research. Most mutations are
insignificant and very few are meaningful, so in order to establish a clear understanding of the
drivers of cancer, there needs to be a large number of genomes available to work with. These
numbers are unobtainable in the current system of clinical trials and academic research, but they
would be accessible if information could be captured from clinical practice. Haussler is hoping
that under Yu’s guidance the ASCO will be able to incorporate data collection into medical
practice. Yu agreed, saying that he believed the “holy grail” for cancer research would be a
healthcare system that engages people in research without sacrificing their rights.

Julie Harris provided her comments at this point, reminding us that the strong division
between research and clinical practice was established as a response to the Belmont report. At
the time the ability to distinguish between the two was useful, but times have changed. Big data
has brought new challenges, but a lack of community involvement in research continues to be a
concern. With Kaiser, she has been involved in a project to build a biorepository that members
can volunteer to donate samples to. The samples are linked to clinical records and environmental
databases so that they may be used to research gene-environment interactions. This project has
been successful so far. Harris attributes at least part of the success to a community advisory
panel that brings together diverse representatives of the public. According to Harris, many of the
participants don’t fully understand the program but trust Kaiser to use the information in a way
that may benefit them someday.

Trust was a primary concern during the question and answer session. Some audience
members were concerned that storage for big data is not secure; that that the information could
be accessed by governments or individuals with malicious intent. This is especially problematic
when the information could easily be de-identified using phenotypic information. Yu mentioned
that there had been a study on establishing and maintaining trust around research samples, and
that most people were more concerned with what the information was used for than who was
using it. This is troublesome for two reasons, one, because it is difficult to anticipate what the
information might be used for in the future, and two, it is not always clear who the “who” is that
might eventually use the data, as institutions are increasingly amorphous. Researchers often try
to maintain trust by assuring donors that the samples will be used for good, but the notion of
good is itself abstract and a part of the question of justice that the working group will continue to
explore at future events.

SJRC in conversation with Peter Yu and David Haussler

Peter Yu, David Haussler and Jenny Reardon Discuss the Meeting of Biomedical Privacy and Genomic Openness

Rap Report > Science and Justice in an Age of Big Data: A Conversation with Peter Yu and David Haussler

On January 22, 2014, the Science & Justice Working Group hosted the first in a series of ongoing conversations about the unresolved issues raised by the recent push to expand efforts to collect and aggregate biological samples and data.  Jenny Reardon (Science & Justice Research Center Director and Associate Professor of Sociology) facilitated this conversation between Peter Yu (incoming President of the American Society of Clinical Oncology and Director of Cancer Research (ASCO) at the Palo Alto Medical Foundation) and David Haussler (Director of the UCSC Center for Biomolecular Sciences and Engineering).  Peter Yu is a renowned medical oncologist and hematologist who has pioneered the advance of health information technology and its use to improve medical care.  The American Society of Clinical Oncology is the world’s leading professional organization representing physicians who care for people with cancer, and has played a lead role in erasing the stigma around cancer through developing and sharing knowledge that promotes cancer prevention and treatment.  In March of this year ASCO announced CancerLinQ, a major effort to collect data on hundreds of thousands of cancer patients to further advance cancer research and treatments. David Haussler is a pioneer in the field of bioinformatics whose group assembled and posted the first working draft of the human genome on the Internet, and is now innovating computer algorithms that will enable the use genomic data in the transformation of cancer care. In June of this year, Haussler and his colleagues announced a “Global Alliance” to foster the sharing of genomic and clinical data that CancerLinQ and other similar efforts require.  Yu and Haussler will discuss the challenges and opportunities raised by efforts to harness big data approaches to biomedical research.

As both Yu and Haussler are keenly aware, aggregating patient tissues and data raises entangled ethical and technical concerns. Finding the proper balance between personal privacy, medical and scientific autonomy, and equitable public benefits is at the heart of multiple recent controversies, including the sequencing and subsequent publication of Henrietta Lacks’ genome and neonatal blood biobanking.  These episodes make clear that the ability of informatic technologies to broaden and deepen the analysis of personal data raises issues that go to the heart of democratic governance. As a society, we have long associated personal control over our own bodies and privacy with full citizenship. Yet we also highly value transparency and knowledge sharing and view both as critical aspects of an open society, and as necessary components of scientific progress.  Today, as aggregated biomedical data become both more useful and more risky, we confront a difficult conflict between the value of privacy and the value of openness.

In an age of widespread social media usage, it is an increasingly familiar task to balance these values in our daily lives. Yet Science & Justice Research Center Director Jenny Reardon recently experienced this tension between privacy and openness in a surprising new way when she had an appointment with a physician at UC San Francisco (UCSF) and was asked to sign a UCSF Terms of Service Form.  That form told her that she “understood” that UCSF could use her tissues and/or medical data in research and that she had no property rights in these tissues/data. Despite being an expert in biomedicine, ethics and society, she found that she did not know what she was being told she “understood” in order that she might receive the medical services of UCSF. Reardon reflected on this experience in an article entitled “Should patients understand that they are research subjects?” that appeared on March 2, 2013 as the cover story for the San Francisco ChronicleSunday Magazine Insight. This article circulated widely, and resulted in Yu contacting Reardon, establishing an ongoing conversation about the future of medical privacy, trust, and informatics.

At the heart of problem is a confusing mix of U.S. case law that denies ownership over one’s bodily tissues once they have left one’s body, medical privacy standards that require providers and researchers to inform you that they may use the tissues for research without directly requesting permission, and the speed at which medical advances are occurring. Given these conditions, it is more difficult than ever to know what one is agreeing to when one signs ubiquitous Terms of Service and informed consent forms.

The San Francisco Chronicle editorial board published an editorial along with Reardon’s articlethat suggested that the US Department of Health and Human Services revise its standards for medical consent. The editors proposed that the HHS standards foster full disclosure and clear communication with patients that more fully addressed questions of who will own and benefit from the collection and distribution of tissues and data.  They also published a response from UCSF’s Elizabeth A. Boyd, associate vice chancellor for ethics and compliance, and Daniel Dohan, associate professor of health policy and social medicine. Boyd and Dohan argued that the success of personalized medicine rests on relationships of trust between physicians, researchers and patients. They noted that UCSF supports revising consent standards, and cite the recent creation of EngageUC, an initiative on the part of UC physicians and faculty to develop new comprehensive guidelines.

Within a few weeks of this discussion in the San Francisco ChronicleThe New York Timespublished an Op-Ed by Rebecca Skloot (author of bestselling book The Immortal Life of Henrietta Lacks) that called for the development of international standards to protect the privacy of genetic data.  This call followed in the wake of the sequencing and publication of the HeLa cell line genome without the consent of the family of Henrietta Lacks, the African American woman whose cells were used to make the cell lines (again, without her consent). The New York Times followed with an article a few weeks later that discussed the concerns of Senator John D. Rockefeller IV, Chair of the Senate Commerce, Science and Transportation Committee, about patient privacy and the lack of transparency on who has access to patient health data. More recently the NIH’s chief Francis Collins personally worked with Lacks’ family to develop a protocol for accessing the HeLa genome data that aimed to balance researchers’ needs with the family’s desire for privacy.

This discomfort bubbling up on the national stage has led to calls to change the Common Rule (the set of laws that govern federally-funded biomedical research in the U.S.), which currently allows for collection of tissues and data from patients as long as anonymity is maintained. It has become clear that anonymity in an age of openness is at best an uncertain policy instrument.  In addition to its technical limits, anonymity does not address the underlying concerns about who will be served by the mining of genomic and health data, and how concerns about privacy, property and justice can be addressed while fostering the creation of new knowledge needed to advance medical care.  Both Yu and Haussler are leading efforts that seek to do a better job fostering innovative research while attending to these fundamental ethical and policy issues, knowing that we need to do both if we are to advance cancer research and care.

This conversation between Peter Yu and David Haussler, facilitated by Jenny Reardon, was the first of several dialogues planned by the Science & Justice Research Center that aim to help clarify these issues at stake in the evolving relationship between openness and privacy in the biomedical sciences.

Wednesday January 22, 2014 |4:00-6:00PM | Engineering 2, Room  599

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.

May 08, 2012 | Are You My Data? Symposium

Conference hosted by the Science & Justice Working Group Conference
sponsored by the UCSC Office of Research, and the UCSC Cancer Genomic Hub

With a human genome sequenced and a map of variable sites in that genome created, governments and many other public and private actors now seek to make genomic data relevant to health, medicine and the society. However, to do so they must navigate the conjunction of two different approaches to data. Within the biomedical domain there are important, well-articulated infrastructures and commitments arising out of concerns about individual rights, patient privacy and the doctor-patient relationship that limit access to biomedical data. This stands in stark contrast to the culture of open access forged by those who worked on the Human Genome Project, and that has continued to be a central commitment of ongoing Human Genome research. Thus, architects of the genomic revolution face competing, complex technical and ethical challenges that arise from this meeting of these domains with substantially different ethos. Additionally, the rise of social media has led to a broad and contested discussion about the proper relationship between persons and data and who profits through access to it.

Continue Reading May 08, 2012 | Are You My Data? Symposium

Apr 23, 2008 | Troy Duster: “Criminal Justice/Genomic Justice?”

The Science and Justice Working Group Presents

A Conversation With: Troy Duster, Professor of Sociology & Director of Institute for the History of the Production of Knowledge, New York University and author of Backdoor to Eugenics (Routledge, 2003)

This month, the U.K. government proposed entering into DNA databases those youths deemed “at risk” for being criminals. How can and/or should “we” respond to such proposals? DNA databases have been celebrated for exonerating those unjustly charged with crimes, and for increasing the effectiveness of the criminal justice system, but at what cost? Are DNA databases creating new classes of persons (i.e., proto-criminals)? What are the justice issues raised by these forensic databases, and how do they relate to questions about prisons and justice? Such databases intersect with and alter issues of race, class and gender, issues that already strongly shape the criminal “justice system”; it is not yet clear what we need to know in order to address these topics in science, justice, and law.

Preceding this event, Prof. Duster will present a Sociology Dept. Colloquia: “DNA Fingerprinting and Civil Liberties: The CSI Effect and the Social and Political Implications of the Ever-Expanding DNA Databases" 3:00-4:30 p.m., Interdisciplinary Sciences Building 120

Sponsored by the Science and Justice Working Group and the Sociology Department

Troy Duster, “Criminal Justice/Genomic Justice?”
SJWG Rapporteur Report
23 April 2008
This event began with Reardon recapping Duster’s previous talk about the “CSI effect” and
DNA databanks. She mentioned that there was lots of attention on DNA data when she lived in
the UK last winter. The front page of the “Observer” recently had a headline, “ ‘Put Young
Children in DNA Database,’ Police Urge.” She asked, “How do we respond to this?” In the UK,
there is now biometric scanning/storing of biological information for migration and immigration
policies … In Troy’s earlier talk, he discussed the bias of the data base being 2/3 people of color,
so Jenny raises the question, “Can we put everyone in the database?”

Duster responded that it doesn’t change the operation of race. He noted that there would be a
false sense of universal justice. That is, having everybody is in the database assumes that since
we are all in, we are all equally subject to whatever it means to be in the database. Troy
discussed a case in the late 1980s that took place at University of Virginia. There were about a
dozen white fraternity boys, mostly from privileged backgrounds, who were raided by the police
for what turned out to be a cocaine raid. The community could not believe the police would
target college-attending white boys while real “criminals” are out on the street. Duster contends
that the apparatus of state will always turn primarily to vulnerable populations, which
consequently turn out to be predominantly black and Latino arrests. He stated that if there were
a universal database, such as in Portugal since 2004, there would continue to be arrests in
targeted areas. “Cold hits” are arrested on the streets and not on privileged college campuses.
The important thing to think about is what is the context and specifics of question. That is as
long as we have the apparatus of the state, it’s fool’s gold to have universal database.

Donna Haraway turned discussion toward the question of positive harm. She agreed that racial,
class distributions are fundamental issues, especially in regards to incarceration populations.
However, Donna questions whether the current database harms and whether the universal
database would do positive harm or will it be a money issue? Would it be a waste of distribution?
Haraway questions whether bias is structured in system and whether DNA bias is irrelevant to
system or is it doing harm? Duster responded that there are both exonerations and releasing of
innocent people—it’s always about individual cases.

Discussion turned towards privacy issues and whether it would be possible to protect 4th
Amendment rights through technical solutions. For instance, it may be possible to divide
individuals’ genetic sequences in order segment control of the sequences and allow for
exonerative use without disclosing the entirety of one’s sequence at any one time. Duster
responded that having technical solutions can be misleading and assumes an amount of expertise
and standardization that is typically not available on a large scale in law enforcement. Presently,
local, state, and national law enforcement agencies have widely divergent standards for taking,
storing, and using genetic data on suspects and convicts.

In response to this, discussion moved toward how to change policing practices. Duster responds
to this by suggesting that we change the reward structure within policing and challenge the
funding priorities that favor prisons over schooling. For instance, there are overtime policies in
police departments that encourage extra arrests and the end of shifts, incentivizing officers to
make excess arrests. Similarly, the state often chooses funding law enforcement and prisons over
universities because prisons create jobs for economically depressed communities and these jobs
cannot be outsourced.

Several participants raised questions about how much biometric and genetic infrastructure feeds
into police state and how much of it can actually be used positively to release innocent prisoners.
Duster responds that DNA at best is going to handle 1-2% of all crimes. Out prisons have 2
million people. Maybe 3000 exonerates for 300,000 who are not getting it. Beatriz da Costa
mentioned her experience of being an immigrant to the US and skepticism of being subject to
laser scanning and questioned something along the lines of where that information is going or
how might it be used against her. Duster responded that it seems to depend almost entirely on
who is in control of database. The answer is going to come in context of who is asking the
question and who has got the power.

SJWG member Jake Metcalf raised the question of whether we are giving DNA too much power
and notes there are all sorts of ways of reading the genome and more subtle ways of
understanding DNA. Some the concerns over genetic databases seems to rest on sketchy science
and an incomplete understanding of exactly what types of information get stored and how they
are used. As important as it is to resist the police state, it is important to avoid reifying an overly
powerful understating of DNA because then it is reinforced, when really it should be challenged
empirically and politically. Chelsea argued that the power of DNA in criminal justice will
largely be settled by legal precedent.

Mark Diekhans made the point that there is a privilege to identifying as/with the socio-economic
class that isn’t scared of being targeted as “criminal.” Duster mentioned that there is this pushing
together of “criminals” that started off as just sexual offenders, to then violent, then, felons, then
misdemeanor, to now arrestees – there’s a long continuum that we need to be aware of. Duster
highlights importance of possible, practical solutions. The ACLU says “arrestees, no; felons,
OK…” but at level of arrestees there is potential for mobilizing.

Rebecca [politics student?] then brought up the epistemological assumption of the body. That is,
without too much science how can the body tell the truth? From a political and ethical
standpoint, is the idea of the body property? What are underlying assumptions about the body?
Reardon added, who owns the self? Whose property is it? We’ve moved from ownership of land
to the self…is it white guilt? Who owns a body? Can anybody have property of the self?
Beatrice notes that classification is issue too. We don’t have to have a good science—looking at
donor profiles online; there are spaces for “homosexual tendencies” are being pathologized.

A question was raised whether there is fear of the “criminal gene”? Is there fear that we might
use new or find new categorization by developing a universal database. Duster responded that
crime is socially defined—even murder and rape. Historically, rape could not have happened to
black women by white men or slave owners. Haraway suggested that the politics of DNA storage
need to consider the politics of where samples are taken from? There is an issue of the quality of
science here and assurance regulating and limitations of a set of samples/data. We are not
looking at DNA but more a repeat of sequences. The politics of sampling raises the question of
“who is compared to what?” Donna reminds us that DNA is not one god but is a variety of
practices—the dog genome is useful to investigate—and thus we should not let DNA stand as a
single word.