Feb 12 | Safiya Umoja Noble on The Algorithms of Oppression: How Search Engines Reinforce Racism

Tuesday, February 12, 2019


Kresge Town Hall

Algorithms of Oppression: How Search Engines Reinforce Racism (NYU Press)

Algorithms of Oppression: How Search Engines Reinforce Racism (NYU Press)

The landscape of information is rapidly shifting as new imperatives and demands push to the fore increasing investment in digital technologies. Yet, critical information scholars continue to demonstrate how digital technology and its narratives are shaped by and infused with values that are not impartial, disembodied, or lacking positionality. Technologies consist of a set of social practices, situated within the dynamics of race, gender, class, and politics, and in the service of something – a position, a profit motive, a means to an end.

In this talk, Dr. Safiya Umoja Noble will discuss her new book, Algorithms of Oppression, and the impact of marginalization and misrepresentation in commercial information platforms like Google search, as well as the implications for public information needs.

Dr. Safiya Umoja Noble is an Associate Professor at UCLA in the Departments of Information Studies and African American Studies, and a visiting faculty member to the University of Southern California’s Annenberg School of Communication. Previously, she was an Assistant Professor in Department of Media and Cinema Studies and the Institute for Communications Research at the University of Illinois at Urbana-Champaign. In 2019, she will join the Oxford Internet Institute at the University of Oxford as a Senior Research Fellow.

She is the author of a best-selling book on racist and sexist algorithmic bias in commercial search engines, entitled Algorithms of Oppression: How Search Engines Reinforce Racism (NYU Press).

Safiya is the recipient of a Hellman Fellowship and the UCLA Early Career Award. Her academic research focuses on the design of digital media platforms on the internet and their impact on society. Her work is both sociological and interdisciplinary, marking the ways that digital media impacts and intersects with issues of race, gender, culture, and technology. She is regularly quoted for her expertise by national and international press on issues of algorithmic discrimination and technology bias, including The Guardian, the BBC, CNN International, USA Today, Wired, Time, and The New York Times, to name a few.

Dr. Noble is the co-editor of two edited volumes: The Intersectional Internet: Race, Sex, Culture and Class Online and Emotions, Technology & Design. She currently serves as an Associate Editor for the Journal of Critical Library and Information Studies, and is the co-editor of the Commentary & Criticism section of the Journal of Feminist Media Studies. She is a member of several academic journal and advisory boards, including Taboo: The Journal of Culture and Education. She holds a Ph.D. and M.S. in Library & Information Science from the University of Illinois at Urbana-Champaign, and a B.A. in Sociology from California State University, Fresno where she was recently awarded the Distinguished Alumni Award for 2018.


Co-Sponsored by the UC Santa Cruz Science & Justice Research Center, Kresge College’s Media & Society Seminar Series, the Sociology department and The Humanities Institute.

March 5 | Sally Lehrman

Tuesday, February 12, 2019


Kresge Town Hall


Description coming soon.

Sally Lehrman is an award-winning reporter and writer specializing in medicine and science policy with an emphasis on genetics, race, and sexuality. Lehrman is director of the journalism ethics program at the Markkula Center for Applied Ethics, leads its signature Trust Project, a complex international collaboration that she began building in 2015 to strengthen public confidence in the news through accountability and transparency. Lehrman has written for some of the most respected names in national print and broadcast media including Scientific American, Nature, Health, Salon.com, and The DNA Files, distributed by NPR.

Co-Sponsored by the UC Santa Cruz Science and Justice Research Center and Kresge College’s Media & Society Seminar Series.

April 5, 2017 | 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, 2017 | 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.


Illustration of the world meltingTuesday, January 24, 2017
4:00-6:00 PM
SJRC Common Room (Oakes 231)


The terms “post-fact”, “post-truth”, and “post-reality” are now being used to label the new era we have entered. We are already seeing the erasure of climate data from servers and websites [1], and purveyors of the truth, including climate scientists, journalists, and academics are being put on warning. (The Climate Scientists witch-hunt [2] and the Professor Watchlist are just two of many indicators). Data refuge efforts are underway [3] amid concerns that the incoming administration will wage a war on scientific expertise [4].

At the same time that it is of upmost importance that facts, truth, and reality be asserted to counter the normalization of lies and fake news used to obscure the truth and manipulate the public, there is a large body of scholarship showing the non-innocent and often times harmful use of these terms in ways that collude with the forces of power, including colonialism, racism, militarism, etc.

We are creating this cluster to help us think through these issues during these extraordinary times.

Convened by Karen Barad, our first meeting is Tuesday Jan 24 4-6pm. This first meeting will focus the question of what these terms (fact, truth, reality) signal to each of us in relationship to our own research. We anticipate that these terms will spark a variety of different associations depending on our fields of study. Please join us.

[1] “DNR purges climate change from web page,” by Lee Bergquist (Milwaukee Journal Sentinel, Dec. 28, 2016) http://www.jsonline.com/story/news/politics/2016/12/28/dnr-purges-climate-change-on-web-page/95929564/

[2] “Trump Transition Ask Energy Dept. Which Employees Work on Climate Change,” by Christopher Dean Hopkins (NPR, Dec 9, 2016)

[3] Q&A: Michelle Murphy, the U of T professor who’s racing to preserve climate-change data before Donald Trump takes office,” by Steve Kupferman (Toronto Life, Dec 16, 2016)

“Scientists are frantically copying U.S. climate data, fearing it might vanish under Trump,” by Brady Dennis (Washington Post, Dec 13, 2016)

“Scientists prepare to fight for their work during ‘the Trumpocene’” by Sarah Kaplan (Washington Post, Dec. 15, 2016)

[4] “How Trump Could Wage a War on Scientific Expertise,” by Ed Yong (The Atlantic, Dec 2, 2016)


Jan 24 Objectivity Justice Notes

May 18, 2016 | 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, 2016 | 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, 2016 | 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

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


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

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.