April 5 | Post Conflict Battlefield Landscape Recovery – or Not?

Wednesday, April 5, 2017
4:00-6:00 PMLIDAR Digital Elevation Model of Fort Douamont and Surrounding Landscape
Engineering 2, room 599

 

The multiple forms of disturbances rendered by conflict upon landscapes around the world demonstrate that this anthropogenic agent is an incredible force that is capable of exerting an influence on the environment in a wide variety of ways, yet the bridge between geomorphology and environmental histories of battlefields is rarely made. This research associated with this presentation examines two case study battlefields, and how post-conflict land-use patterns are tied into what we see on the contemporary landscape of today. Also emphasized in the presentation are how various geospatial data collection tools and methods can be utilized with geospatial software to model the changes rendered to landscapes due to conflict, and to link these disturbances with modern land-use patterns.

Joe Hupy (Associate Professor of Geography, University of Wisconsin – Eau Claire)
Joseph Hupy earned his PhD in geography from Michigan State University using soils as a proxy indicator for landscape stability following disturbances rendered by explosive munitions in World War One. Out of that research he coined the term ‘bombturbation’, which describes how soils are disturbed from explosive munitions, one of many forms of anthropogeomorphology where humans shape the landscape. The research surrounding World War One bombturbation led towards examination of other battlefields around the world, including research forays on the Viet Nam battlefield of Khe Sanh in 2007 and 2009. Research on all these battlefields relied upon a myriad of geospatial equipment and Geographic Information System modeling techniques. Out of that research and most recently, Joe has begun to use Unmanned Aerial Systems as a tool to gather data, and hopes to revisit other world battlefields in collaboration with other researchers in different disciplines using this technology as a tool.

In discussion with Science & Justice Graduate Fellow Jeff Sherman (Politics).
Co-Sponsored by the Anthropology department and the Center for Creative Ecologies.

April 20 | Data Under Threat: Rescuing Environmental Data in the Trump Era

Thursday, April 20, Noon-1pm
2nd Floor Instruction & Outreach Alcove
McHenry Library

In recognition of Endangered Data Week, Dr. Lindsey Dillon will discuss her recent experience as a coordinator of a network of academics and non-profits monitoring potential threats to federal environmental and energy policy data at the onset of the Trump administration.

Discussion will follow the presentation. Bring your lunch, questions, observations and experiences. Learn about data rescue efforts such as the Environmental Data & Governance Initiative (EDGI), the End of Term Web Archive, #DataRescue, DataRefuge, DataLumos, and Open Access Week.

Dr. Dillon is an Assistant Professor of Sociology at UCSC where she is affiliated with the Environmental Studies Department and the Science & Justice Research Center. She is also chair of the Environmental Data & Governance Initiative (EDGI), “an international network of academics and non-profits addressing potential threats to federal environmental and energy policy, and to the scientific research infrastructure built to investigate, inform, and enforce.”

Endangered Data Week (April 17-21, 2017) is a new, nationwide effort to raise awareness of threats to publicly available data.

May 18 | Just Data? Justice, Knowledge and Care in an Age of Precision Medicine

The “Just Data?” meeting at UCSC aims to broaden the public discussion about big data and health from ethical and legal questions about privacy and informed consent to more fundamental questions about the right and just constitution of care, trust, and knowledge in an age of biomedical data. This agenda-setting workshop will gather international leaders in genomics, health and informatics, civil rights, bioethics, indigenous rights, science policy and the social study of health and medicine. The meeting will be broken into two phases: 1) Discussion of critical challenges, problems and promises; 2) Collaborative work to set the science and justice agenda of big biodata and precision medicine.

For full event and registration information, please visit: https://justdataucsc.wordpress.com/

Co-Sponsored by the National Science Foundation, the NHGRI program of the NIH, the UC North Bioethics Collaboratory, and the UCSC Genomics Institute.

May 18-19 | Alumni Room, University Center, UC Santa Cruz

Apr 20 | Digital Dreams and Their Discontents: Where do we go from here?

Wednesday, April 20, 2016 | 4:00 – 5:30PM | SJRC Common Room (Oakes 231)

A conversation with Erin McElroy (PhD Candidate, Feminist Studies, UCSC) and Sara Tocchetti (SJRC Visiting Scholar, Postdoctoral Fellow, Centre Alexandre Koyré, Paris, France).

Erin McElroy on the Digital Nomad

With the emergence of Silicon Valley’s “Tech Boom 2.0,” so too has emerged the figure of the “digital nomad”—a type of transient technologic worker tethered to Silicon Valley corporations yet able to embody new mobilities vis-à-vis the globalization of high-speed fiber-optics and sharing economy infrastructure. From San Francisco to new global outposts such as Romania, which boasts the world’s fifth fastest internet speed due to postsocialist technologic economization, the arrival of the digital nomad often incites contexts of gentrification, manifesting as increased rental prices, eviction rates, and forced homelessness/nomadism. Critical of this correlation as well as formative histories of nomadic racial fantasy, I also question what other uses of digital technology, such as that of the Anti-Eviction Mapping Project, emerge not just to critique technologies of displacement, but also to fight for other futures of the digital?

Erin McElroy is a Doctoral Student in Feminist Studies at UC Santa Cruz and cofounder/director of the Anti-Eviction Mapping Project, a digital cartography and oral history collective documenting the ecology of “Tech Boom” induced gentrification. McElroy brings a spatial analysis and collective ethos to their research, which studies materializations and histories of dispossessive technologies in Romania, employing ethnography, literary/cultural analysis, and archival work, and utilizing postsocialist analytics and feminist science and technology studies. McElroy holds a MA in Cultural Anthropology from CIIS and a BA in Cultural Studies from Hampshire College, and is an active anti-eviction organizer with Eviction Free San Francisco.

Sara Tocchetti on DIYbio and the Possibility of Critical Life Sciences

Drawing from the analogy with the personal computer and other personalized technologies, DIYbio members envision biology and biotechnology as a creative and personal technology to be made available to everyone. Such ideology of a ‘personal biology’ can be understood as a variation of ‘digital utopianism’ and seems especially attractive for young and/or disenfranchised students and researchers. Working through several case studies of DIYbio initiatives and engaging with a general sense of enthusiasm for such practices expressed in the STS literature, this presentation questions what type of critical space does digital utopianism occupies in the life sciences and STS and what forms of alternative practices we might need to recollect and/or imagine.

Sara Tocchetti recently received her PhD from the London School of Economics working on the DIYbio network, socio-technical utopias, theories of technology driven social change, and her own professional identity. Feeling stuck as an ex-biologist-not-yet turned into a science and technology studies scholar, she has moved on to study the history and present of radical science movements and is currently based at the Centre Alexandre Koyré in Paris on an Early Post-doc Scholarship from the Swiss National Fund. Her recent publications includes Is an FBI Agent a DIY Biologist Like Any Other? A Cultural Analysis of a Biosecurity Risk (Tocchetti and Aguiton, 2015) and Quelles tactiques critiques sur le terrain des promesses scientifiques [Which critical tactics in the field of scientific promises] (Aguiton, Bovet and Tocchetti, 2015).

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

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 | Big Data: The Promises and Problematics of Prediction

_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

Dec 03 | A Conversation with Jim Kent on the Ebola Genome Browser

 Jim Kent joined the Science & Justice Working Group for a conversation on how he and his team created the ebola genome browser. He will discuss not only their successes but the challenges they faced as they provide insights into the larger problems of knowledge and justice raised by the ebola crisis.

Jim Kent directs the genome browser development and quality assurance staff of the UCSC Genome Bioinformatics Group. He created the computer program that assembled the first working draft of the human genome sequence from information produced by sequencing centers worldwide and participated in the informatics associated with the finishing effort. The UCSC Genome Bioinformatics Group participates in the public consortium efforts to produce, assemble, and annotate genomes.

For more information on the bowser, see Kent’s interview by the Santa Cruz Sentinel and the UCSC Genome Browser Blog.

Engineering 2, 475 | December 03, 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