Data Justice

Mar 03, 2016 | The Quants of Wall Street: Risk and the Ethics of New Financial Technologies

Posted on by

Who wins and who loses as Wall Street transforms from sweaty bodies on the stock exchange floor to quants and physicists designing swift, sleek stealth modes of moving financial data at a distance? What new opacities and inequalities accompany the rise of new financial technologies—such as Bitcoins, roboadvisers, and laser-linked data centers — the new coin and conduits of financial realms? The Science and Justice Research Center in collaboration with the Center for Analytical Finance and the Sociology Department host a discussion with industry, academic and NGO leaders on these critical questions about who benefits and who loses in the high tech worlds of today’s financial markets.

Sherry Paul CFP®, CIMA®, and CRPC®, Senior Vice President, Wealth Advisor, UCSC Alumna

Daniel Friedman, UCSC Distinguished Professor of Economics, Author of Morals and Markets

Anne Price, Program Director of the Closing the Racial Wealth Gap Initiative, Insight

Moderated by Joe Klett, Visiting Professor of Sociology, UCSC and Nirvikar Singh, Director of the Center for Analytical Finance, Distinguished Professor of Economics at UCSC.

Co-Sponsored by the Blum Center, Center for Analytical Finance, Center for Labor Studies, Cowell College, Re-Thinking Capitalism, and the Sociology Department.

12:00-1:45 PM | Engineering 2 room 180

"The Quants of Wall Street: Risk and the Ethics of New Financial Technologies"
SJWG Rapporteur Report
3 March 2016
Critical Listener Report by Andy Murray, Sociology

Sherry Paul CFP®, CIMA®, CRPC®, Senior Vice President, Wealth Advisor, UCSC Alumna

Daniel Friedman, UCSC Distinguished Professor of Economics, Author of Morals and Markets

Anne Price, Program Director of the Closing the Racial Wealth Gap Initiative, Insight

Moderated by Joe Klett Visiting Professor of Sociology at UCSC and Nirvikar Singh, Director
of the Center for Analytical Finance, Distinguished Professor of Economics at UCSC.

Co-Sponsored by the Blum Center, Center for Analytical Finance, Center for Labor Studies,
Cowell College, Re-Thinking Capitalism, and the Sociology Department.

This Science & Justice Working Group event was a relatively large affair, consisting of three
panelists and two moderators. Its attendees filled the large room, meaning there were too many
folks for the usual Science and Justice Research Center introductions. The participants varied in
their backgrounds. The first, Sherry Paul, is a UCSC alumna and a wealth advisor who works on
Wall Street. The second, Daniel Friedman, is a Distinguished Professor of Economics at UCSC.
The third, Anne Price, works out of Oakland for the Insight Center for Community Economic
Development, where she directs an initiative to address the racial wealth gap. UCSC faculty
members Joe Klett, Visiting Professor of Sociology, and Nirvikar Singh, also a Distinguished
Professor of Economics, served as moderators. The event was put on by a larger-than-usual
number of co-sponsors, showing that the matters of concern—wealth inequality and the winners
and losers of high tech finance—speak to many audiences. Jenny Reardon, Director of the
Science and Justice Research Center, provided some more specific framing questions in her
introduction: are the instruments and intricacies of finance capital too complex to understand? Or
are we simply not looking at them closely enough? If the latter is the case, what could cause us to
start looking, if such a major event the 2007-08 financial crisis wasn’t enough of an impetus?
After all, multiple people in the room had personal stories about home ownership and loss of
value suffered as a result of the crisis.

Sherry Paul opened with a few jokes about her time at UCSC and how she found her way back (a
story that, like the financial crisis, was linked to disaster and misunderstanding) before moving
into the meat of her talk. Paul discussed the democratization of financial access and situated her
role as a financial steward who helps to protect individuals and families from the risks of
markets. Nonetheless, she talked about her move into finance capital as moving “into the belly of
the beast” and to “the dark side.” She spent a lot of time focusing on the “humanity” aspect of
finance, rather than the “math,” noting that the latter is much easier to learn. She compared
Silicon Valley to Wall Street, noting its lack of inclusion of women and people of color, and
suggested that high tech finance, in a sense the marrying of Silicon Valley and Wall Street,
represents a second iteration of the Industrial Revolution. Ultimately, her main points were about
restoring and managing the human element of finance, better managing human behavior around
investment rather than turning to robotic financial advisers. In defense of what amounts to an
improved market rationality, she asserted that “markets tend to revert to the mean no matter what
point they’re at in an industrial revolution.” Nirvikar Singh followed up on Paul succinctly,
affirming that “technology is not a substitute for ethics.”

Daniel Friedman attempted to summarize “the good, the bad, and the ugly” of markets, asking
what they do and don’t do well, and how financial capital instruments change things. First, he
asserted that markets scale up well and that they aggregate their participants’ resources and
information. However, markets can “go bad” when cheating, exclusion, currying favor, and
buying influence occur. Friedman asserted that this can happen very easily, and was in fact
dominant in markets until about 200 years ago. Markets, he argued, are also prone to bubbles and
crashes. “The ugly” is that because of these tendencies, markets must be regulated, but this
impedes both “good” and “bad” finance. He talked about financial instruments that increase the
efficiency and scalability of trading at the expense of personal connections, arguing that such
technologies may increase market instability. He argued that changing the way in which time is
measured—“making time granular in a different format”—could solve some of the issues with
such high-frequency trading. He went through his final bits of advice quickly, advocating “smart
regulation” and proper incentives.

Anne Price began her talk by noting that she was “probably going to be the oddball.” Her
discussion focused on accumulated, structural inequalities. These racial inequalities mean that
simply guaranteeing access to financial markets is insufficient if greater wealth equality is indeed
the goal. She framed the push for racial wealth equality as about “movement building” and
“pulling the curtain back.” She portrayed finance capital as a siphon deliberately designed to take
wealth from people. Metaphors and language were very important to her framing of markets, and
she insisted that language that grants agency to “the economy” obfuscates how “people create
and make deliberate changes to the economy.” She argued against viewing economics as
something that just happens, and instead viewing it as a series of choices, often motivated by
emotion rather than facts. Price received loud applause at the end of her talk, the loudest of the
event.

During the questioning, each of the panelists solidified their positions. In response to a question
from Nirvikar Singh about robotic financial advisers, Sherry Paul argued that she was against
them because they would deepen existing inequalities, allowing people to capitalize on a lack of
trust. She again argued for changing the way people approach markets and advocated having the
“greedy investor [not be] the assumed and presumed definition.” In response to a question from
Joe Klett, Dan similarly reasserted that there needs to be an ethical foundation for finance
capital, or it will not work—though it was not entirely clear what “working” meant in this
instance. Returning to discourse, Anne Price lamented that the housing crisis was a missed
opportunity to talk about the roles of the government and personal responsibility in markets.
The transition to audience questions made it clear that there was a notable tension between a
more favorable, optimistic view of markets—such as that espoused by Sherry Paul and Daniel
Friedman—and those who made the argument that inequality is an inherent feature of a market
system—as Anne Price did. This tension was the most notable of the event, as most of the
audience questions came from sociology graduate students and professors. After noting the
growing inequality in Silicon Valley, a few audience members asked if there was an inherent
logic to markets that means that they require the existence of an underclass, or if the problems
could be fixed through some form of regulation. These questions were greeted with an
acknowledgement of their scope, observations that time was limited, and laughter. This really
exposed the rift in beliefs about markets, made all the more clear when a sociology graduate
student pointed out that in in order for markets to “always recover” as Paul had asserted they do,
they require intervention in the form of taxpayer money. “Is the market becoming a religion?” he
asked, echoing Price’s earlier points about the importance of discourse—in this case about faith
in the ability of the market to “recover”—and about paying attention to the actual economic
decisions that people make.

These themes, of the logic of markets, and the role of individual agency and action versus
economic structure, proved to be the sticking points. These points were reiterated in the brief
closing statements that each panelist made. Price most walked the line between individual
agency and inherent logics, paying a great deal of attention to longstanding structural
inequalities, while also emphasizing the choices that people deliberately make to change the
economy. Paul, on the other hand, argued that there is no inherent logic to markets, that they are
merely “systems being created by people.” Despite this, she also acknowledged that capitalism is
fundamentally selfish, but returned to market optimism by asserting that we need to figure out a
way for “selfishness to allow us to work together.” Friedman seemed to err more on the
structural side, finishing by saying that markets could potentially function well and stay in
recovery for a long time, but that it was the nature of markets that there would be periodic crises.
While we ran out of time on this particular day, these tensions between the agency of individuals
and institutions, structures, and logics—longstanding in the social sciences—can provide plenty
of fodder for future conversations: about how people make markets and how markets make
people, and about what kinds of futures the new technologies of finance capital are helping usher
into existence.

Nov 04, 2015 | Big Data: The Promises and Problematics of Prediction

Posted on by

_DSC1315

By virtue of big data, we are being offered a dizzying array of predictive possibilities unimaginable a generation ago. If a crime has occurred in such and such a place, it is probable that others will be committed in the same area (predictive policing). If a student presents with a given profile, it is likely that she will run into trouble within a year at university (educational data analytics). If an infant displays a particular genetic disposition, it is likely that he will become antisocial. In a world where correlation is cast as causation, a core political and philosophical task is to understand what it means to put our faith in the prophets of big data. In this talk, from the Council for Big Data, Ethics and Society, Geoffrey Bowker and Jacob Metcalf will explore with us the landscape of prediction in big data.

Geoffrey Bowker, Professor of Informatics, University of California, Irvine

Jacob Metcalf, Researcher, Data & Society Research Institute

November 4, 2015 | 4:00-6:00 PM | Physical Sciences Building 305

Apr 16, 2014 | Trust in Genomics: A challenge for scientists and ethicists alike

Posted on by

Access to data and the quality of data depend partially on the quality of trust between physicians, researchers and many different patients.  When trust breaks down, patients and research subjects may request that their samples be withdrawn, or they may not provide samples and data in the first place. Technological developments that enable biomedical institutions to bank vast quantities of tissues and data today introduce new challenges to this critical project of creating and maintaining trust.  Any tissue now given for research or routine medical care technically could be used for an indefinite amount of time for entirely unforeseen purposes. In such a situation, it is hard to say that anyone understands what they are consenting to, even the researchers and physicians collecting samples and running trials.  Under these conditions, trust based in mutual understanding faces new challenges.

How to address these novel challenges will be at the center of the Science & Justice Working Group meeting on April 16, 2014, “Trust in Genomics: A Problem of Knowledge and Ethics”, 4:00-6:00PM in Engineering 2 599 on the UCSC campus. In this discussion, respected medical geneticist Wylie Burke (University Washington) and cultural anthropologist and bioethicist Barbara Koenig (UCSF) will share their experiences working with biobanks, researchers and patients to build better data sets by attending to matters of trust and respect.

Dr. Barbara Koenig, professor of medical anthropology and bioethics in the UCSF School of Nursing, is the co-Director of a newly launched research institute at UCSF dedicated to understanding the ethical, legal and social implications of translational medical genomics, The Center for Transdisciplinary ELSI Research in Translational Genomics (CT2G). By bringing together a broad, multidisciplinary range of expertise, CT2G is endeavoring to ask, and answer, questions about how genomic information will be used in a manner that benefits researchers, patients and broader publics. “A decade after the human genome was fully mapped,” Koenig argues, “figuring out how to translate genomic findings into prevention and clinical care has become a public health priority.”

Dr. Wylie Burke, Professor of Bioethics and Humanities at the University of Washington and Principal Investigator of the University of Washington Center for Genomics and Healthcare Equality, co-authored an article in Science (Trinidad et al., 2011) that highlighted the potential benefits of approaching consent (and re-consent) as an opportunity to engage with donors beyond legal formalities. She and her co-authors examine the downstream consequences of not thoroughly consenting donors for the use of their biological materials and data. Drawing on cases that have appeared in the headlines, such as the sequencing of the HeLa cell line, they examine the wide range of opinions about how best to protect patient privacy and dignity in an age when even experts cannot anticipate how biological samples might be used in the near future. In the article, they propose that “researchers and IRBs consider how the informed consent process could be used to foster respectful engagement, rather than merely mitigate risk.”

This discussion is the second in a series of discussions that the SJRC is hosting on Data Justice (see Science and Justice in an Age of Big Data: A Conversation with Peter Yu and David Haussler for a description of the first meeting held on January 22, 2014).  The meeting is co-sponsored by the Department of Molecular, Cellular, and Developmental Biology, the Center for Biomolecular Sciences and Engineering, and the GENECATS and CANCERCATS research groups.

April 16, 2014 | Engineering 2 Room 599    

 

"Trust in Genomics: A challenge for scientists and ethicists alike"
SJWG Rapporteur Report
16 April 2014
Rapporteur Report by Lizzy Hare
This event was the second in a series of discussions that the Science & Justice Research
Center is hosting on Data Justice. This working group meeting brought medical geneticist Wylie
Burke (University of Washington) and cultural anthropologist and bioethicist Barbara Koenig
(University of California San Francisco) into conversation with Science & Justice Center
Director Jenny Reardon and David Haussler (Director of the UCSC Center for Biomolecular
Science and Engineering). Drs. Burke and Koenig shared their experiences working with
biobanks, researchers and patients to build better data sets by attending to matters of trust and
respect. Matters of trust were central to the first Working Group meeting on Data Justice that
was held in January of 2014. The goal of this meeting was to extend that conversation and
explore those issues more fully.

Jenny Reardon’s introduction provided an overview of some of the concerns that the
Working Group hoped to pursue with the Data Justice series and this event in particular.
Wylie Burke started the discussion by talking about the University of Washington’s
(UW) “biotrust” efforts. They are seeking to collect clinical samples and health information as
patients receive care at affiliated institutions. UW consulted with ethicists during the
development of this biobank and the result was an opt-in process rather than the opt-out format
that most institutions use. In order to explain how UW’s biotrust efforts are distinct from others,
she explained the case of a five site research consortia that was seeking to understand to what
extent data in electronic records could determine phenotypes for genetic research. Once the
research was completed, the funder required that the health and genomic data be sent to a central
repository. UW was the only one of the five sites where the Institutional Review Board (IRB)
required that they seek additional consent from patients, arguing that sending information to a
federal repository was of a different order of magnitude the research that had been specified in
the original consent forms. Burke and her colleagues were able to gain extra funds to survey
people about how they felt about the reconsent, and overwhelmingly they wanted to be asked and
did not see it as a nuisance.

Barbara Koenig wanted to turn the conversation away from trust and towards
trustworthiness, which places the onus on the institution to be worthy of the trust of patients and
the community. While working at the Mayo clinic, Koenig was a part of the same research
consortia as Burke. The Mayo clinic had used a 3-way checkbox consent form that had been
considered sufficient by the IRB, but the clinic ultimately decided that the form was insufficient.
The clinic took the issue to their community advisory board, and that board decided that it was
acceptable notify patients and allow them to opt out rather than go through the process of
reconsent. Koenig referred to the act of consulting with a community advisory board as
“deliberative community engagement”, and the strategies are based on deliberative democracy.
The goal is to bring individuals who represent the community together to discuss data
governance. This method will not replace informed consent, but will enrich it, because consent
alone might not be sufficient to deal with future obligations and findings.

David Haussler joined the conversation and voiced his concern with establishing trust for
large, global alliances through local efforts like those that Koenig and Burke had discussed.
Haussler believes that large data sets collected through international collaborations are necessary
for understanding complex problems such as cancer and inherited diseases. He was excited by
the conversation at this meeting because he’s been working as a part of the Global Alliance (an
international effort to share genomic data) and they have been having a tremendous issue with
establishing trustworthiness. Burke and Koenig reiterated that trust needs to start locally, and
that local procedures need to cover rules about access to data, even if that information will be
used as a part of a global research effort.

The central issue seems to be a lack of agreement on how much data could be shared, and
where that information would be stored. Restricting access might make the process and the
institutions involved more trustworthy for community members and patients, but restricting
access prevents creativity and potentially groundbreaking uses, as well as raising concerns about
who is able to determine access to the information. Jenny mentioned the adage “information
wants to be free”, but our worlds have borders and those borders allow us to make decisions
about which values count in a particular place. Jake Metcalf reminded us that there is a second
part to this famous adage, and that is that information wants to be free, but it also wants to be
expensive. In our quickness to speak of information as something that has a will and desires to
freedom, we tend to ignore the infrastructures that are required to share that information and to
allow its use.

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

Posted on by

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 Chronicle’s 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 Reardon’s 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

Posted on by

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 Chronicle’s 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 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 Chronicle, The 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

Posted on by

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

Posted on by

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?”

Posted on by

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.