2013-14

Preventing cervical cancer in Nicaragua

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“Preventing cervical cancer in Nicaragua.  Can vaccines and screens be means of solidarity?”

Speaker: Kaye Edwards, Associate Professor, Haverford College
Host: Jake Metcalf

Rap Report > Preventing cervical cancer in Nicaragua. Can vaccines and screens be means of solidarity?

Kaye Edwards will talk about why cervical cancer, which is largely preventable, remains the most common cancer among women in impoverished countries like Nicaragua. Her talk will cover the natural history of this disease to highlight potential points of intervention; the social, political and economic factors that help explain why cervical cancer mortality rates are up to 12-times higher in some countries than in the United States; and the larger issue of the need for community engagement in discussions about how to prevent and treat diseases.

A member of Haverford’s faculty since 1986, Edwards received her Ph.D. from the University of Colorado in molecular, cellular, and developmental biology and did post-doctoral research in tropical parasitology in Boston. She currently teaches courses that explore various facets of social justice, including how they are embodied in the health of communities and how they are informed by Quaker faith and practice.  She is the coordinator of Haverford’s new interdisciplinary minor in Health Studies and currently serves as the faculty director of Haverford’s Quaker Affairs Office. Edwards was Director of the Center for Peace and Global Citizenship from 2003-2006 and is the founder of Haverford House, CPGC’s post-baccalaureate community-action program in Philadelphia.  She is a convinced Friend and a member of Radnor Monthly Meeting; she serves on the Board of ProNica, a Quaker organization working in solidarity with community groups in Nicaragua, and on the Corporation of Haverford College.

 

May 28, 2014 | Engineering 2 Room 599

Broadening Participation in Science and Engineering: Social and Intellectual Diversity

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Rap Report > Broadening Participation in Science and Engineering: Social and Intellectual Diversity

At this panel discussion, we will discuss how cultural values shape what research questions are asked and how research is conducted. Science and engineering have long been portrayed as merely merit-based domains, or, as historians of science have called it, a ‘culture of no culture’. The demographic within these fields is commonly viewed as unrelated to the quality of knowledge produced, and therefore only a concern in so far as funding agencies mandate it to be. Drawing on specific examples we will examine how research questions change depending on who is asking them, teasing apart the complex relations between research agendas and the socio-cultural identities of scientists and engineers. Investigating these questions will contribute to a better understanding of the importance of diversity within STEM fields. Furthermore, a shared examination of the experiences of inclusion and exclusion will help develop a better grasp of how to pursue social equity within science and engineering fields. Finally, it will also produce insights about what kind of knowledge is produced and for whom.

Moderator:

Ruth Müller a postdoctoral research fellow at the Research Policy Group, Lund University, Sweden and lecturer in Gender Studies, Biology & Science-Technology-Society, at the University of Vienna, focuses her research on the relations between research policy, institutional frameworks and scientific work practices, currently in the fields of climate science and epigenetics. Müller is interested in critical reflection of contemporary academic work practices and social movements in this area, such as the slow science movement. Dr. Ruth Müller joins UC Santa Cruz for a second Visiting Scholarship with the Science & Justice Research Center.

Panelists:

Faye Crosby, Provost of Cowell College, Chair of Council of Provosts, and Distinguished Professor of Psychology at UCSC specializes in social justice. Her research interests looks at the relation between objective (i.e., consensual) and subjective reality; she has looked at individual attitudes in the context of social change and stability. Crosby’s current work investigates the bases of people’s reactions to affirmative action and has launched a new series of studies on how people can undertake non-revolutionary changes in rules that come to be revealed as unfair. She is also examining other ways, such as mentoring, of enhancing the peaceful evolution of work organizations.

Barbara Gee, has 35 years of experience in the computer industry, where she has held leadership positions in all functional areas. She has worked for HP, Silicon Graphics, TiVo, and other well known tech companies. In addition, Barb has served in leadership roles in the non-profit sector (including Huckleberry Youth Programs), and prior to joining the Anita Borg Institute was the Executive Officer of Human Resources for the Oakland Unified School District. She has also served on the San Mateo County Commission on the Status of Women, the Board of Global Exchange, and is an Advisory Board member of the STEM Academy at McClymonds High School in Oakland California. Barb currently serves as the Vice President of Programs for ABI, where she oversees the execution and development of programs focused on increasing the participation of women in technical roles, with the belief that when the inventors of technology mirror those who use it, society gains. Barb received her B.S. in Electrical Engineering and Computer Science from UC Berkeley, and her Masters in Management at the Sloan School of Management at M.I.T.

Joan Haran, a Research Fellow at Cesagene (Cardiff Centre for Ethical and Social Aspects of Genomics and Epigenetics) at the Cardiff School of Social Sciences whose research revolves around gender, representation and technoscience. She is particularly interested in the policing of boundaries between science fact and science fiction. Haran has a BA (Hons) in Literature and History from North Staffordshire Polytechnic, an MA (Dist) in Gender, Society and Culture from Birkbeck College, University of London and a PhD in Sociology from Warwick University. She co-authored the monograph Human Cloning in the Media: From science fiction to science practice (Routledge 2008) which drew together media, cultural, and feminist technoscience studies preoccupations and methodologies to document the symbolic and material labor of making genomics in the media.

Melissa Jurica, Associate Professor of MCD Biology at UCSC oversees the Jurica Lab, a research lab at UCSC working to understand the structural and functional analysis of spliceosomes a tiny molecular machine found in all human cells, as it plays a critical role in how our genes encode for an organism as unique and complex as a human being. She has recently become the director of the UCSC Initiative to Maximize Student Development program, which supports both undergraduate and graduate students in an effort to increase diversity in biomedical research.

Thanks to Women in Science and Engineering (WiSE) for facilitating the following recordings of the event:

Broadening Participation Video: Part 1, Part 2, Part 3

Engineering 2, Room 599 |  May 14, 2014

ANTHROPOCENE CONFERENCE: Arts of Living on a Damaged Planet

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Can humans and other species continue to inhabit the earth together? Through noticing, describing, and imagining, we renew conversation about life on earth.

Full schedule: ANTHROPOCENE: Arts of Living on a Damaged Planet

Video documentation of the conference: 

“Anthropocene: Arts of Living on a Damaged Planet” begins Thursday evening with a talk by acclaimed science fiction author Ursula K. Le Guin at the Rio Theatre in Santa Cruz. The talk has long been sold out, but simulcast video streaming will be available at two locations on the UCSC campus: the Humanities Lecture Hall (Room 206) and Social Sciences 1 Room 110. The talk and broadcast are scheduled to begin at 7 p.m.

“Through noticing, describing, and imagining, we renew conversation about life on Earth,” is how organizers describe the conference’s objectives.

Le Guin spoke of her views on the subject in an extensive interview with the Good Times weekly newspaper. “Well, we’re at a point where how many species go extinct everyday due to human interference? How many oil spills are we going to have? How many people are running around shooting school children with repeater guns? Things are not going well,” she said.

The conference was conceived by UCSC anthropology professor Anna Tsing and is co-presented by the UCSC Anthropology Department’s Emerging Worlds initiative and Denmark’s Aarhus University Research on the Anthropocene project. The term Anthropocene is a new one, used to describe the geologic epoch defined by human disturbance of the earth’s ecosystems.

Last year, Tsing won a $5 million Niels Bohr Professorship from the Danish National Research Foundation with which she is establishing a program encompassing the humanities, natural sciences, social sciences, and the arts in an exploration the Anthropocene.

Aarhus is Denmark’s largest and second oldest university. Founded in 1928, it is located about 120 miles west of Copenhagen. Tsing spent last fall quarter at Aarhus and will teach and conduct research there during the 2014-2015 academic year. She spent time at the university in 2010 on a Guggenheim fellowship.

The conference will continue Friday and Saturday with series of talks that are free and open to the public. All will be held at the Colleges Nine and Ten Multipurpose Room on the UCSC campus. A complete schedule can be found at anthropo.ihr.ucsc.edu.

May 8, 2014 7-9pm at the Rio Theater
May 9, 2014 9-5:45pm in the College 9/10 Multipurpose Room
May 10, 2014 9:30-6pm in the College 9/10 Multipurpose Room

Film Screening “FIXED: The Science/Fiction of Human Enhancement”

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A community-wide screening event featuring two refreshing new films which challenge old perspectives on disability, work, technology, the body and the future of humanity.  Post-screening discussion with Foster Andersen (Founder and President of local non-profit Shared Adventures) , Nancy Chen (UCSC, Prof of Anthropology), and Regan Brashear (LGBT Youth organizer).

The Interviewer, (12 mins)
A funny and poignant narrative film from Australia which looks at stigma and challenges to employment for people with intellectual disabilities. Watch trailer, here.

FIXED_postcardFIXED: The Science/ Fiction of Human Enhancement, (60 mins.)

From bionic limbs and neural implants to prenatal screening, researchers around the world are hard at work developing a myriad of technologies to fix or enhance the human body. Award-winning documentary, FIXED: The Science/Fiction of Human Enhancement takes a close look at the drive to be “better than human” and the radical technological innovations that may take us there.

What does “disabled” mean when a man with no legs can run faster than most people in the world? What does “normal” mean when cosmetic surgery procedures have risen over 450% percent in the last fifteen years and increasing numbers of people turn to “smart drugs” every day to get ahead at school or work? With prenatal screening able to predict hundreds of probable conditions, who should determine what kind of people get to be born? If you could augment your body’s abilities in any way imaginable, would you? Watch trailer, here.

*In honor of National Dance Week, Fixed also celebrates the rich world of disability culture by featuring excerpts of 12 of the world’s leading integrated dance companies with disabled and non-disabled dancers and other artists.

Co-sponsored by the Science and Justice Research Center and the Santa Cruz County Commission on Disabilities.

This event is part of the Reel Work Labor Film Festival. See the full schedule at www.reelwork.org.

7:00PM | Del Mar Theatre (1124 Pacific Ave., Downtown Santa Cruz)

Post-film discussion with:

Foster Andersen is the Founder and President of Shared Adventures, a non-profit organization in Santa Cruz established in 1994 dedicated to improving the quality of life of people living with disabilities. He is co-author of Living in a State of Stuck: How Assistive Technology Impacts the Lives of People with Disabilities. Andersen has degrees in Mechanical Engineering, Manufacturing Engineering, and Computer Graphics Drafting and is the inventor of Quad-bee, a patented Frisbee you can throw with your thumb that has sold over 500 worldwide. Andersen currently serves on the In-home Support Service Public Authority Advisory Commission.

Regan Brashear has been working on labor, race, youth, LGBTQ, and disability issues for over twenty years through documentary film, union organizing, community forums, and grassroots activism. Brashear has a BA in American Studies (Highest Honors, Phi Beta Kappa) and a MA in Social Documentation (Documentary Film) from UC Santa Cruz. Her interest in disability studies, which eventually led to the making of Fixed, started in 1997, after a car accident which began an ongoing journey with fibromyalgia and chronic pain.

Nancy Chen is a Professor of Anthropology at UC Santa Cruz. Her work examines the shifting boundaries between food, medicine, and bodies. She is the co-editor of Bodies in the Making:  Transgression & Transformation (2005) and has taught a graduate seminar on Bodies, Knowledge, Practice which explores many of the issues addressed in tonight’s film.

Eric Zigman has 25 years of experience in service to individuals with disabilities. He has worked with service providers and regional centers in senior management roles as well as innovative demonstrations projects involving the residential, vocational and other services. In addition, Eric has worked on several projects to support individuals transitioning from institutional care to lives in community settings. His BA is in Literature and Psychology from UC Santa Cruz and a Masters in Rehabilitation Administration from the University of San Francisco. Currently, he is the CEO of the Pomeroy Recreation and Rehabilitation Center in San Francisco.

Moderated by Lizzy Hare, Graduate Student Researcher and Fellow with UCSC Science and Justice Research Center

De-Extinction: Building Future Worlds with Extinct Organisms?

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Rap Report > De-Extinction: Building Future Worlds with Extinct Organisms?

For decades, conservationists have worked to minimize human impacts and restore landscapes. Today, global climate change threatens the efficacy of their efforts, prompting them to consider interventions that many would have deemed heretical—and technologically impossible—only a generation prior.

De-extinction, the proposed revival or re-creation of extinct species using synthetic biology, has recently become a focal point in these debates. On April 23, 2014 the UCSC Science and Justice Working Group will host a symposium, “De-Extinction: Building Future Worlds with Extinct Organisms?” Panelists include Beth Shapiro (Associate Professor of Ecology and Evolutionary Biology, UCSC and National Geographic Emerging Explorer) Oliver Ryder (Director of Genetics and Kleberg Chair, San Diego Zoo’s Institute for Conservation Research), Paul Koch (UCSC Dean of Physical & Biological Sciences, Professor of Earth & Planetary Sciences), and Brian Switek (science writer, National Geographic blogs) and Allen Thompson (Oregon State University, Philosophy). Donna Haraway (Distinguished Professor Emerita, UCSC History of Consciousness Department) will provide closing commentary.

Proposals for de-extinction have sparked many conversations in bioethics and conservation science. Our hope for this symposium is to deepen the discussion by engaging questions of science and justice. We will consider the fundamental principles that shape our visions of a flourishing future for all species on the planet, and re-examine longstanding questions about the constitution of and proper relations between science, technology, and nature. The question at the center of our discussions will be: What kind of future world(s) do we want to make, and what role, if any, should engineered species have in it?

In the first panel, “Conservation and Biotechnology: For Whose Good?” speakers will explore the role of biotechnology in conservation efforts. While conservation historically has focused on the well-being of non-human species and systems, biotechnology mostly has been directed at advancing human ends. Yet many conservationists are now eager to adopt new biotechnological tools to aid their scientific research and conservation agendas, including some who favor de-extinction and possible spin-off techniques. We will discuss what challenges may arise as conservationists make use of scientific infrastructures and ethical concepts that mostly have been directed to the betterment of humans.

The second panel, “Science, Media and Spectacle: How Does Media Support, Threaten, or Change the De-extinction Agenda?” will explore the powerful imaginaries of de-extinction that have animated the public conversation. Media spectacle is central to de-extinction.  The question for the panel will be:  relates to scientific practice, policy and funding.

De-extinction has captured public attention in a way that other conservation topics rarely do. The past year has seen a proliferation of media coverage of the topic, including cover stories in the National Geographic Magazine and New York Times Sunday Magazine, a TEDx conference, and is the subject of a vibrant twitter discussion (#deextinction). Such attention and excitement brings in funders and participants, but also may generate conflict with other conservation research, practices and goals.  Excitement generated by this coverage often overlooks the central question: Which values, research agendas and techniques should guide conservation practices and our collective multi-species futures in an age of extinction?

The symposium builds on a series of ongoing Science & Justice Working Group conversations about justice in a more than human world.

Agenda:

2:00-2:15       Introduction

2:15-3:30       Panel I: Conservation and Biotechnology: For Whose Good?

Panelists:

Oliver Ryder (Director of Genetics and Kleberg Chair at San Diego Zoo’s Institute for Conservation Research; Adjunct Professor of Biology, UCSD)

Paul Koch (Dean of Physical and Biological Sciences, UCSC)

Beth Shapiro (Associate Professor of Ecology and Evolutionary Biology, UCSC)

3:30-3:45       Break

3:45-5:45       Panel II: Science, Media and Spectacle: How Does Media Support, Threaten or

                      Change the De-extinction Agenda?

Panelists:

Allen Thompson (Associate Professor of Philosophy, Oregon State University)

Brian Switek (Freelance Science Writer and Author, Phenomena-National Geographic)

Jake Metcalf (Assistant Director, Science and Justice Research Center, UCSC)

Commentator: 

Donna Haraway (Distinguished Professor Emerita of History of Consciousness, UCSC)

5:45-6:00       Conclusion

Wednesday April 23, 2014 | 2:00-6:00 pm |Engineering 2, Room 599

A UCSC campus news article appears here.

Trust in Genomics: A challenge for scientists and ethicists alike

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Rap Report > 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    

 

Cocktail Hour: Allen Thompson “Inter-generational Justice and Issues in Ecosystem Management”

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Intergenerational Justice and Issues in Ecosystem Management

Pervasive and in some cases irreversible environmental change is putting great pressure on normative thinking in the fields of ecosystem management, including conservation and restoration ecology. In this talk I will present an argument based on obligations to future generations to justify decisions about allocating limited resources in the practice of ecological restoration, or under conditions of what we might call “restoration triage.” Thompson will discuss a growing field of ecological thought that concerns the increasing emergence of non-analog or “novel” ecosystems and the subsequent need to develop an “intervention” ecology to supplement historic management principles of non-intervention, arguing that an intervention ecology will be required to achieve our preservation and conservation goals in a new world of rapidly changing ecologies.

Allen Thompson is an Associate Professor of Philosophy in the School of History, Philosophy & Religion at Oregon State University. His research includes Environmental Philosophy, Philosophical Ethics, Social and Political Philosophy, Practical Reason

Tuesday February 18, 2014  |  4:00-6:00pm | Science & Justice Common Room, Oakes 231

 

WiSE Winter Luncheon: Addressing Gender Bias in the Sciences

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WiSE Winter Luncheon:
Addressing Gender Bias in the Sciences

When: Thursday, Feb. 6, 2014, 12pm – 2pm
Where: Alumni Room at the University Center (map)
Who: You! All education levels and genders welcome
FREE buffet lunch provided, but only for those who RSVP by Tuesday, Jan. 28

Moderator:
Jenny Reardon, Director of the Science & Justice Research Center, UCSC

Panelists:
Karen Barad, Professor of Feminist Studies, UCSC
Nancy Heischman, Director of Campus Conflict Resolution Services, UCSC
Campbell Leaper, Professor of Psychology, UCSC
Enrico Ramirez-Ruiz, Professor of Astronomy, UCSC

By popular demand, the Women in Science and Engineering (WiSE) group is hosting a luncheon on gender bias in the sciences. Have you ever wondered how to recognize and/or deal with gender bias in STEM careers? Have you known people who have been biased against, but are unsure of how to help them? Are you afraid that you yourself might be biased? Are you interested in the status of women in STEM fields? If you said yes to any of these questions, this luncheon is for you!

The luncheon will feature brief speeches by each of the panelists on their opinions on gender bias in the sciences, followed by a discussion moderated by Jenny Reardon. Afterwards, we will have a Q&A session for audience members to participate in! If you have questions/topics that you would like the panelists to discuss at the luncheon, you may submit them anonymously via this form.

Undergraduates, graduate students, postdocs, and faculty of all genders are welcome. However, space is limited, so please fill out this RSVP form by Tuesday, January 28th.

Please contact Kim (tenggard@biology.ucsc.edu) with any questions regarding this event.

Science and Justice in an Age of Big Data: Biomedical Privacy & Genomic Openness

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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

SJRC in conversation with Peter Yu and David Haussler

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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