Preventing Cervical Cancer in Nicaragua

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

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

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

Kaye Edwards, "Preventing Cervical Cancer in Nicaragua: Can vaccines and screens be means of solidarity?"
SJWG Rapporteur Report
23 April 2014
Rapporteur Report by Lizzy Hare
Haverford University Professor Kaye Edwards spoke to the Working Group about her
efforts to reduce the mortality rate of cervical cancer in Nicaragua. Edwards was originally
trained in developmental biology in the same lab as Susan Strome (Professor of Molecular,
Cellular and Developmental Biology at UCSC) at University of Colorado, Boulder. As she
progressed in her academic career, Edwards became increasingly interested in pursuing her
interests in health and social justice. While many advancements in basic research promise to
eventually advance medical treatment, there is often less attention given to how those treatments
will be taken up in the world, and whether or not they will be available and feasible for those in
need. Edwards has been working with local groups to prevent, detect, and treat cervical cancer,
which has a very high mortality rate in Nicaragua.

Cervical cancer has a very strong link to Human papillomavirus (HPV), but as Edwards
explained, there are many other biosocial risk factors that play a role in determining who will
ultimately develop cancer. Many now believe that cervical cancer is best prevented through
vaccines, but this must happen before women (and increasingly, men as well) are sexually active.
Secondary prevention requires the identification and elimination of pre-cancerous legions. In
wealthier nations, this is often done with pap smears and extraction with LEEP, but these
techniques require multiple office visits and trained physicians. See-and-treat with acetic acid
(vinegar) and cryotherapy is a low cost option that requires only one office visit and less
equipment. Tertiary prevention of cervical cancer mortality includes surgical ablation,
radiotherapy, and/or chemotherapy, which is inaccessible to most women in Nicaragua. This
model of preventing, detecting, and treating cervical cancer is effective, but it is also highly
individualistic.

Rather than looking only at the individual, Edwards reminds us that we need to consider
an eco-social model of health that takes into consideration the relationships, community and
society that each woman is a part of. When Edwards first went to Nicaragua, she met Maria
Elena Bonilla, the founder and director of Centro de Mujeres Acahualinca, a clinic that started
with grassroots efforts in a low-income neighborhood of Managua. During that visit, Edwards
learned that the men in the community had not been particularly concerned with women’s
mortality rates. It made her realize that even community-led projects might silence a number of
voices. When she returned to the US, she tried to help them gain access to free-of-cost vaccines
for HPV, but encountered multiple roadblocks. She learned, yet again, that there are a number of
structural hurdles in place.

Edwards realized that the grassroots level of organization is useful for understanding
what the community wants and needs, as well as cultivating trust and respect. At the same time,
grassroots clinics struggle to gain access to adequate funding, space, training, pharmaceutical
supplies and technology. Instead of taking a charity approach to assisting grassroots efforts, she
advocates solidarity. For Edwards, being in solidarity means working with these women for a
common goal, rather than simply trying to help. With her final slide, Edwards asked the working
group “What could you do with your talents, expertise, skill sets, professional and personal
networks, and capacity to learn, to prevent premature suffering and undue deaths?”
The first questions after the break were about the efficacy of the vaccine and how it might
be distributed more effectively. While there are several suggestions for how it might be
administered to more young women, Edwards reminds us that because cervical cancer is such a
slowly progressing disease, and because the HPV vaccine could only prevent approximately 70%
of incidences of cervical cancer, there still needs to be a commitment to detection and treatment
of precancerous lesions and cancer. There are also a number of social factors that need to be
mitigated, such as stress-induced immunosuppression and early sexual activity. Vaccination
could have a tremendous impact, but it needs to be incorporated in a broader program of care and
education.

Luz asked if there might be other factors that are causing the extraordinarily high
mortality rate for cervical cancers in Nicaragua. Edwards reiterated that HPV is a necessary but
not sufficient factor for cervical cancer. She had already mentioned several social factors that
play a large role, such as early pregnancies and poor nutrition, among others, but there might be
environmental factors as well, such as pesticides. Part of the challenge of fighting cervical
cancer in Nicaragua is that there are very limited databases for tracking this kind of information.
Jenny mentioned that this touches on one of the issues that Science & Justice has been
discussing this year. If cancer is thought of as being caused by a virus, then it is a single-cause
illness that can have a single cure. Also, if a virus causes it, it is possible to ignore complicated
environmental or social factors. Edwards agreed, and added that most health initiatives take the
nation-state as the unit of analysis, which ends up obscuring other factors that regions might
share. This has tremendous implications for determining responsibility. If cancer is seen as an
infectious disease, then it is an issue belonging to the individual, to that women’s reproductive
health, rather than an issue mired in complex environmental and biosocial factors. With this, a
student from Strome’s lab spoke up, pointing out that she and her colleagues focus on the virus
because they are trained in molecular biology, not social science or politics. Edwards agreed that
the molecular biologists should be focusing on the virus, because that is the best use of their
training, but that they should have more opportunities to share that expertise with others working
in fields that might also be important for treating a complex issue like cervical cancer mortality.
It is exactly that kind of broad-based knowledge and openness to collaboration that Edwards has
been working to cultivate in her students at Haverford.

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

"Broadening Participation in Science and Engineering: Social and Intellectual Diversity"
SJWG Rapporteur Report
14 May 2014
Rapporteur Report by Lizzy Hare
At this Science & Justice Working Group Event, Lund University postdoctoral research
fellow Ruth Müller moderated a discussion about how diversity within the STEM fields might be
expanded. Panelists Fay Crosby (Provost of Cowell College, and Distinguished Professor of
Psychology at UCSC), Barbara Gee (Vice President of Programs at the Anita Borg Institute for
Women and Technology), Joan Haran (Research Fellow at the Cardiff Centre for Ethical and
Social Aspects of Genomics and Epigenetics at the Cardiff School of Social Sciences), and
Melissa Jurica (Associate Professor of MCD Biology at UCSC) shared their experiences and
specific examples of inclusion and exclusion within the STEM fields. Science & Justice
Research Center Director Jenny Reardon welcomed participants and the audience, adding that
the topic has been appearing more frequently in recent news media, and that she’s interested in
the rise of this concern during a time when there doesn’t seem to be a lot of progress being made
towards equity and inclusion.

Ruth introduced the discussion with a reminder that issues of inclusion have always been
a part of scientific knowledge production. In the early days of the experimental sciences,
scientists distinguished themselves by portraying themselves as the “modest witness” who could
transcend the body to make observations of the world that were not occluded or biased by the
researcher’s perspective. Crucial to the operation of these laboratories were those whose
contributions could not be counted as objective science, due to their non-white, non-male, nonbourgeois
bodies. When multiple others began to demand access, many of those who were most
successful embodied the “neutral” characteristics of white, male, bourgeois science as best they
could, effectively creating a science that could claim inclusion while still ignoring the
contributions of other ways of life. Müller asks us if it is perhaps time for science to accept that
it only allows in a select few, and that the traits that are seen as necessary for a good scientist
exclude a number of potentially excellent thinkers and scholars.

Faye Crosby began her contribution by explaining that she believes strongly in the value
of positivism, and that she believes this value is exclusive of gender. In her experience, there has
often been a pretense of using standards of merit, yet non-scientific values are able to creep in.
She used a social psychology study on affirmative action as an example. In that experiment,
white male subjects were asked to review applications for a single prize. They received
information about a person of color, or a white person. In half of the situations the persons of
color had low test scores but excellent letters of recommendation, while in the other group, it was
reversed. The reviewers showed a clear preference for white candidates, and justified it either
with the letters of recommendation or the test scores, depending on the case. Either way, they
claimed to be fair and unbiased in their decision making process. Faye used this example
because she wants to make the case that we should not change the way we do science to make it
more “feminine”, but rather, we should make it more scientific and make sure that the same rules
apply all over. This will require taking notice of all of the small structural factors that make it
easy to continue to enact practices that keep women down.

Barbara Gee discussed her work at the Anita Borg institute, and emphasized how the
institute uses scientific research to support the goal of the foundation. That research has helped
them to show that including women technicians and engineers in the research and design of a
product is both good social practice and good business practice, because it has been shown to
boost sales and yield more successful products. The Institute has had some success in fostering
relationships between women in computing and inspiring confidence, but they are still working
on how to change the culture within companies. Gee said that this is especially difficult because
so much of the problem lies in unconscious biases.

Melissa Jurica echoed many of the same sentiments that Crosby and Gee had shared with
the Working Group. Jurica explained that in her experience much of the problem lies in the
values that scientists are expected to share and to cultivate. These values might not promote
minority representation in science, and may even actively work to discourage it. She mentioned
aggression, self-promotion and skepticism in particular. For her, self-doubt is a form of
skepticism that she thinks might ultimately be beneficial to science, but it tends not to be valued
in laboratory settings. Because these values are seen as being neutral, it is hard for scientists to
recognize that privileging these values often means privileging certain kinds of people. Like
Faye, she encouraged the Working Group participants to utilize implicit bias tests as a way to
help people understand where their own prejudices may lie. In closing, Jurica also expressed
some frustration that women scientists are asked to participate in panels about diversity, but that
such talks often end up preaching to the converted, as it is too easy for those in majority
positions to ignore them. It is worth mentioning that in a full room, there were only two men who
were not directly affiliated with the Science & Justice Research Center.

Joan Haran brought the conversation outside of the context of the lab by discussing the
representation of women scientists in the media. Why, she asked, are women scientists in the
media so highly stereotyped? At the same time, she reminded us that realistic representations of
women scientists might not be desirable either. Fewer than 13% of professional scientists are
women, so if representations were accurate, their voices would be heard even less frequently.
But if representations of women scientists shift towards being aspirational, perhaps the better
move would actually be to disentangle the categories in the first place, and make space for
representations of scientists who happen to be women, or women who happen to be scientists.

One of the main concerns voiced during the discussion period was why there are fewer
women Computer Science undergraduates in the US now than there were in 1988, which was the
peak. Some seem to think that this could be because men present themselves as more confident
and self-assured, which leads women to believe that they are behind. Ruth asked if this might be
because we have myths about what science is as an activity, and that means that we tend to deemphasize
the importance of group effort in advancing scientific knowledge. Lauren asked the
panelists what could be done to make women more confident, and Faye responded by saying that
she does not want women to become as confident as men, but rather, she wants men to become
as humble as women. Melissa reminded us that all of these issues become more problematic
when there is a large gap in the gender divide in the workplace.

The matter of care and caretaking was also addressed in the discussion period. Melissa
attributes her ability to be successful as a scientist in part to her spouse who is willing to stay at
home. This caused others to wonder about the invisible labor of caretaking that has allowed
male scientists to be successful over the years.

In going forward, the Working Group is optimistic that the knowledge about gender gaps
and inequalities in science will be useful in making changes in the future, but there still seems to
be some concern around how to enact change in academic and private institutions.

ANTHROPOCENE CONFERENCE: Arts of Living on a Damaged Planet

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”

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?

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.

"De-Extinction: Building Future Worlds with Extinct Organisms?"
SJWG Rapporteur Report
23 October 2014
Rapporteur Report by Lizzy Hare and Tracy Ballinger
This symposium sought to extend conversations about de-extinction to questions about
justice. Symposium organizers Jake Metcalf, Lizzy Hare, and Tracy Ballinger asked symposium
speakers to consider the question: What kind of future world(s) do we want to make, and what
role, if any, should engineered species have in it? The symposium was split into two panels. The
first panel, Conservation and Biotechnology: For Whose Good?, featured Oliver Ryder (Director
of Genetics and Kleberg Chair at San Diego Zoo’s Institute for Conservation Research and
Adjunct Professor of Biology, UC San Diego), Paul Koch (Dean of Physical and Biological
Sciences, UCSC), and Beth Shapiro (Associate Professor of Ecology and Evolutionary Biology,
UCSC). This panel explored what we should expect as biotechnology is brought to bear on
conservation problems, and how these disciplines’ visions of a more just future for humans, nonhuman
species, and ecosystems might converge or diverge.

Science & Justice Research Center director Jenny Reardon provided opening comments.
She asked us to consider how we have come to this moment of world-building, and to what is at
stake.

The first speaker, Oliver Ryder, presented examples from the Frozen Zoo, which is a
biobank that is collecting and archiving frozen tissue, DNA, gametes, and even viable diploid
cells from threatened and endangered species. The Frozen Zoo and similar projects aim to
facilitate the genetic rescue of critically endangered species by expanding genetic diversity and
increasing a population base. Ryder suggested that genetic rescue projects are preferable to
“true” de-extinction, and that really what needs to be done to save species is to save ecosystems
and habitat. Technological interventions, such as captive breeding, genetic rescue and
translocation can help, but will not ultimately prevent extinction of the species’ habitat simply
does not exist.

Paul Koch began his presentation with the reminder that extinction is forever. Even if deextinction
technology was able to produce a perfect genetic match with the extinct species
(which it will not) that was successfully brought to term using the help of a compatible surrogate
(which is unlikely) we still face a significant challenge with regard to proper socialization. He
reminded us of the case of the California condor which developed a troublesome affinity for
humans despite extensive efforts to properly socialize the chicks. While this might seem a minor
nuisance, it could ultimately be a significant social challenge. He asked us to imagine, for a
moment, how conservation efforts would handle the public relations difficulties that might come
from hundreds of thousands of de-extinct passenger pigeons swarming the skies over our cities
and defecating on our cars. Because de-extinction would create organisms “inspired” by the
dead, Koch asked the audience to consider de-extinction as an “act of artistic creation.” Because
of this, he suggested that de-extinction needs to justify itself, especially because most of the
supposed benefits of de-extinction could be achieved at a lower cost and with a higher
probability of success if they are done through rewilding efforts. Like some perspectives on deextinction,
re-wilding accepts that the nature/culture dichotomy is no longer a useful way to view
the world, because humans have made significant changes to virtually every landscape, and
therefore it is humans’ moral obligation to care for that world, even if it means treating it as a
managed landscape. Creative landscape management can work to preserve species and
ecosystem services, thus over time reducing the need for intensive efforts like de-extinction.

Beth Shapiro echoed many of the same concerns as the panelists before her. She began
by reiterating the infeasibility of de-extinction projects. In many cases, the kinds of cells that
would be necessary simply aren’t available. Chimeras, hybrids, or other forms of organisms
“inspired by” extinct species would be a best-case scenario. Even if this “best-case” scenario
was made possible, there would continue to be other issues. Like Ryder and Koch, Shapiro
pointed out that in many cases we still have not addressed the cause of the extinctions. Habitat
loss continues to be an issue for most threatened species, and global climate change will only
exacerbate this issue. The case of the California condor is a good example of the challenges that
are faced when efforts are made to release animals from captivity that have never been in the
wild and lack proper socialization and behavior training. Curiosity has been invoked as one of
the driving forces behind these efforts, but we need to seriously consider whether curiosity is a
sufficient justification for the suffering and tremendous expense of de-extinction efforts.

In the brief question and answer period after the first panel, Micha Rahder mentioned that
much of the attention around de-extinction has been directed at charismatic species, such as
passenger pigeons and wooly mammoths, but less exciting species might be responsible for
integral ecosystem services. Donna Haraway asked a similar question, wondering about the
microbiological assemblages of extinct species. Shapiro said that this was something that
researchers had considered, but that funders play a large role in pushing for big, charismatic
species. Ryder confirmed this, adding that there is also a bias toward mammals because
researchers have a better understanding of how those might be grown in a laboratory setting. As
for the microbiome of de-extinct species, Shapiro said that it really wasn’t a matter of concern
yet since de-extinction remains such a far-fetched idea.

The Second panel, Science, Media and Spectacle: How Does Media Support, Threaten or
Change the De-extinction Agenda?, featured speakers Allen Thompson (Associate Professor of
Philosophy, Oregon State University), Brian Switek (Freelance Science Writer and Author,
Phenomena -National Geographic), and Jake Metcalf (Assistant Director, Science & Justice
Research Center, UCSC). This panel examined how media spectacle relates to scientific practice,
policy and funding.

The second panel began with Allen Thompson. Thompson proposes that de-extinction be
thought of as “luxury conservation” because most of the considerations of it are technoscience
oriented and, as Koch argued, there are easier, cheaper, and more effective methods for
conservation. Thompson argues that we should instead focus our limited resources on
minimizing future extinctions and increasing the adaptive capacity of extant species. These
efforts might take the form of fairly intensive management strategies, such as assisted migration.
They might also require us to radically reconsider the value of things like novel ecosystems,
which have previously been something conservationists sought to eradicate, but now may be
thought of as valuable because they preserve wildness or resiliency. Thompson ended his talk by
asking us to take the anthropocene concept seriously, and to think about what it requires of
human communities.

Brian Switek offered a change of pace and tone from the other presenters. As a science
writer, he has a good sense of how to engage a diverse audience, and he was successful at
capturing the attention of the attendees with jokes and anecdotes about his work on deextinction.
He talked about how de-extnction has captured public attention in part because it
deals with charismatic megafauna, but also because it serves as a good example of broader
concerns that the public has about science. Most people immediately think of Jurassic Park
when they think about de-extinction, and after some sense of the wonder and spectacle of the
technology, the next thing that people recall is the “Dr. Frankenstein aspect”. That is, people are
concerned that scientists may not be asking themselves key ethical questions. Switek feels that
to some degree, public interest in de-extinction is more about this issue of trust and ethics in
science than it is about a sheer fascination with mammoths. He suggests that we should keep this
in mind during the symposium, and recognize that there is much to learn from the phenomenon
of de-extinction besides actualizing the possibility of making a new species.

Jake Metcalf begins by pointing out that much of the ethical inquiry in media coverage of
de-extinction has been limited to the question of should we or shouldn’t we, as if it were as
simple as pushing a big red button. He explains that framing the question in this way is actually
deceptive because it implies that we have a lot of knowledge about the future, and therefore put a
lot of responsibility on that particular decision. De-extinction disrupts our sense of temporality
and permanence, but it can also teach us about our own sense of care in the present. He asks us
to think about how de-extinction can help us to understand how we might better care for the
world such that threatened creatures or de-extinct creatures are able to thrive. Following up on
some of the ideas that Thompson presented, Metcalf suggests that de-extinction is entangling us
with new, caring bonds.

Final comments were provided by Donna Haraway (Distinguished Professor Emerita of
History of Consciousness, UCSC). She begins her comments by asking, “how can we change
the story?” Her proposed method for changing the story is to “thicken the we” who are included
in the stories. In order to do this, we must ask: who cares, and who and what is at stake? And we
need to cultivate the capacity to respond. This is what she means by response-ability. Haraway
says the present needs to be thicker. If we are imagining futures, let’s imagine wildly and think
critically about our ideals. As an exercise, she asks the audience to imagine a future in which
each person is the caretaker and spokesperson for a given species and may carry some of that
species’ DNA in their genome. Is this a future that we want? At this point, she returns to one of
Reardon’s introductory comments about mourning and loss. Haraway reminds us that death is
very important, and that de-extinction is very much about the denial of death. She encourages us
to think of new narratives with which to think about death, including species death, as an integral
part of life.

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.

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

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

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

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