Jenny Reardon’s op-ed sparks conversation about medical and genetic privacy

Lung tissue samples taken from the body of a soldier who died of influenza in 1918 are pictured in an undated photo. Credit: Armed Forces Institute Of Pathol, NYT

SJRC Co-Director Jenny Reardon published an Op-Ed in the San Francisco Chronicle on March 2, 2013, “Should patients understand that they are research subjects?” In the article she recounts visiting a physician at UC San Francisco and not being able to parse the standard informed consent to having tissues and/or medical data used anonymously in medical research. 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 actually imposible to know what one is consenting to when one signs these ubiquitous forms, making that ‘consent’ tenuous at best. Reardon, whose research examines the social, ethical political dynamics of biomedicine and genomics, notes that even experts like her are in the dark about how their tissues might be used in the near future, and recent research has shown that while researchers may aspire to keeping tissues and data anonymous it is no longer technically feasible.

I have spent two decades studying this minefield, and even I had a hard time making sense of what it might mean for these researchers to have access to my samples. For example, UCSF would be required by law to make my samples “anonymous,” yet research published in Science the day of my visit revealed that even anonymous samples can be reidentified. Does this mean that information gained from my samples might be linked back to me?

Reardon cites recent developments in patient consent at the University of Washington medical centers as a model for UCSF and other providers to adopt. At the University of Washington, patients are able to opt out of research without their physicians knowing, and thus not feel as if they are risking their access to care. Additionally, Reardon supports giving patients more rights to affirmatively opt in to research whenever their tissues or data is desired by researchers.

The San Francisco Chronicle editorial board also published an editorial in support of Reardon’s proposal. The editors suggest that as the US Department of Health and Human Services revises its standards for medical consent, they should keep these principles in mind:

— Patients may not have legal “property,” but they still have rights. Regulators should err on the side of more patient disclosure, not less.

— Compensation is going to be a big question going forward, but it doesn’t have to be monetary. If there’s no longer a way to provide patients with anonymity, will they have free or reasonably priced access to medical developments that come about as a result of their cells or DNA?

— Standardized disclosures should be encouraged throughout the industry. Different institutions have widely varying policies. Patients don’t deserve to be confused.

In response to these two pieces, UCSF’s Elizabeth A. Boyd, associate vice chancellor for ethics and compliance, and Daniel Dohan, associate professor of health policy and social medicine, noted that the success of medical research rests on relationships of trust between physicians, researchers and patients. The development of personalized medicine, which promises to revolutionize health care by tailoring treatments to individuals, will require willingness on the part of patients to provide samples for research and testing. Boyd and Dohan note that UCSF supports revising consent standards, and cite the recent creati0n of EngageUC, an initiative on the part of UC physicians and faculty to develop new comprehensive guidelines.

We want to develop a consent process and a set of policies that will help ensure that all patients – whether they have volunteered for specific research, are donating leftover tumor samples, or are being admitted to the hospital for care – truly understand what information may be gleaned from their samples, how that information will be used, whom it will be shared with, and what privacy controls can – and cannot – be guaranteed.

Reardon and the rest of the UCSC Science & Justice Research Center will continue to contribute to these conversations.

 

Jenny Reardon Awarded Brocher Foundation Residency

Jenny Reardon, Associate Professor of Sociology, Founder and Co-Director of the Science & Justice Research Center at the University of California, Santa Cruz was awarded a Residency with The Brocher Foundation to write her upcoming book The Post-Genomic Condition: Ethics, Justice and Knowledge After the Genome.

The Brocher Foundation is a Swiss non profit law Foundation offering visiting researchers the opportunity to stay at the Brocher Centre in a peaceful park on shores of Lake Geneva, to write a book – articles – an essay or a PhD thesis. The visiting positions are a unique occasion to meet other researchers from different disciplines and countries as well as experts from numerous International Organizations & Non Gouvernemental Organizations based in Geneva such as WHO, WTO, WIPO, UNHCR, ILO, WMA, ICRC.

Since 2007 the Brocher Centre has hosted more than a hundred junior and senior researchers from all around the world for stays ranging from one to six months.

Residencies with the Brocher Centre give researchers (PhD students to Professors) the opportunity to work on projects on the ethical, legal and social implications for humankind of recent medical research and new technologies.

 

Informational meeting for new cohort of Science & Justice Graduate Training Program

INFORMATIONAL MEETING: Wednesday March 6 2013, 12:30-2:00PM, at the Baytree Conference Center. Lunch will be provided.

SPRING 2013 COURSE: Science & Justice: Experiments in Collaboration (SOCY/BME/FMST 268A and ANTH 267), Prof. Andrew Mathews, Thursdays 9-12:00

We are pleased to announce new opportunities for graduate students to join our NSF-funded Science & Justice Training Program. The SJTP brings together students and faculty from across all departments and divisions on campus to develop innovative research at the intersections of science and society. Students will receive training and mentorship in interdisciplinary research methods and develop collaborative research projects. The spring course, Science & Justice: Experiments in Collaboration, will be the first step in a (pending) Graduate Certificate Program that will provide students with a number of opportunities for research funding, planning and hosting colloquia related to their research, training in writing for interdisciplinary academic and non-academic audiences and participating in other NSF-sponsored projects.

Enrollment in the course is required for participating in the Training Program. Attending the informational meeting is strongly encouraged, but not required.

Past collaborative research projects have included:

  • Physicists working with small scale farmers to develop solar greenhouses scaled to local farming needs
  • Colloquia about the social and political consequences of scientific uncertainty in climate change research
  • Examining how art can empower food system justice movements
  • Working with local publics to improve African fishery science

Prior SJTP Fellows have come from the following departments: Philosophy, Physics, Ecology and Evolutionary Biology, Environmental Studies, History of Consciousness, Digital Arts and New Media, Sociology, Earth and Planetary Sciences, Anthropology, and Politics.

Click there to download a flyer for this event.

 

Recent special issues edited by Science & Justice members, past and present

A number of past and present Science & Justice members have recently edited special editions of scholarly journals focussed on themes commonly explored in Science & Justice colloquia and courses. These collections highlight the ways in which S&J facilitates thinking across boundaries and gathering around interesting objects.

Assistant Director of the S&J Research Center  Jacob Metcalf and longtime friend of S&J, Thom van Dooren (University of New South Wales), co-edited an edition of Environmental Philosophy (9:1) titled Temporal Environments: Rethinking Time and Ecology. The collection of essays addresses the role that temporality, or lived time, should have in environmental philosophy, and especially ethics. The role of time in environmental ethics has largely been restricted to an empty container for human agency to do good or ill. By understanding time as material, produced, constructed, maintained, lived, multiple, and a more-than-human concern, the authors in this collection are able to ask which times are liveable for humans and non-humans alike. This topic grew out of Science & Justice discussions, especially the Slow Science event in Fall 2011.

Astrid Schrader (York), a founding member of the Science & Justice Working Group, co-edited with Sophia Roosth (Harvard) a special issue of differences: A Journal of Feminist Cultural Studies (23:3) titled Feminist Theory Out of Science. The issue features articles by a number of Science & Justice members and friends, including Karen Barad, co-Director of the Science & Justice Training Program. Attending to the rich entanglements of scientific and critical theory, contributors to this issue scrutinize phenomena in nature to explore new territory in feminist science studies. With a special focus on relating theory to method, these scholars generate new feminist approaches to scientific practice. What emerges from these diverse essays is an approach to critical thinking that inhabits, elaborates, and feeds upon scientific theory, holding feminist theory accountable to science and vice versa.

Lindsay Kelley (Public Library of Science), an early member of the Science & Justice Working Group, and Lynn Turner (Goldsmiths) co-edited an issue of parallax (19:1) titled bon appétit. This issue includes a contribution from S&J Assistant Director, Jacob Metcalf, on the ethics of cultured meat and the stories we tell about technoscientific advances. bon appétit explores the limits of eating, confronting the boundaries between self and other, filth and food.  At the time of writing escalating food costs – especially as linked to climate change – provoke daily crises, demonstrating the urgency of a wholesale rethinking of the matter of what, how and who we eat. The essays engage different strategies and target different aspects of this erstwhile basic need.

Forthcoming shortly as a special issue in Science Technology & Human Values, S&J advisory board member Laura Mamo (SFSU) and Jennifer Fishman (McGill) have collected articles on the Entanglements of Science, Ethics and Justice. This issue grew out of a conference about topics in science and justice at SFSU, including an article on genomics and justice by Jenny Reardon, co-Director of the S&J Research Center.

Karen Barad provides keynote address to “MATTERING: Feminism, Science and Materialism” conference

Karen Barad, co-Director for the Science & Justice Training Program, will provide the keynote address at the upcoming feminist science studies conference at CUNY, MATTERING: Feminism, Science and Materialism.

This conference, organized jointly by the Center for the Study of Women and Society, the Committee on Interdisciplinary Science Studies and the Advanced Research Collaborative at the Graduate Center, City University of New York, will engage with feminist perspectives on the onto-epistemological questions raised by the materialist turn.

In the past decade, feminist theory has elaborated new materialist perspectives to re-imagine nature, biology, and matter more generally and to critically address new developments in biology, physics, neuroscience and other scientific disciplines. This scholarship revisits the relationship between human corporeality and subjectivity, questions and redefines the boundaries of human and non-human and nature and culture, and elaborates on their mutual entanglements. New feminist theories address materialization as a complex and open process and matter as lively and productive. The conference will address: the intellectual and scientific context of the new turn toward materialism; the relation of matter (including the biological body) to the social; the insights, knowledge and methodologies offered by the new materialist studies of science; the political implications of neo-materialism for feminism as a project, theory and a movement for social justice; theoretical innovations for addressing material-discursive relations and the epistemological questions they raise; and empirical research using materialist feminist frameworks.

Science & Justice Announces Artists in Residence

The Science & Justice Research Center is pleased to announce a new Artists in Residence program for undergraduate students, supported by the OpenLab, SPARC and the Arts at UCSC.

This year we are featuring two artists, Patrick Appleby and Kiko Kolb. Patrick and Kiko will be engaged in Science & Justice Programming throughout the year. They will produce material to be displayed in our rotating gallery and assist our graduate student Fellows with realization of their projects. Their residencies supply them with materials and lab fees for projects that capture the major themes of the Center’s research.

Patrick  is a fourth year Art and History of Art & Visual Culture undergraduate from Benicia, CA. He works mainly in the media of painting and printmaking though his concepts are influenced by photography and the technologies of vision. He has an interest in experimenting with and exploring the visual image and the role of human subjectivity in technological mediations of the world. Recently his projects have aimed to connect photographic and virtual realities in different ways. By exploring the ways in which the world is represented visually he aims to better understand the role of human observation in an increasingly technological world.

His residency is co-sponsored by the OpenLab Network. This is directed by Professor Jennifer Parker and targets a complex education issue of national significance regarding the ability of art and science researchers to collaborate on research endeavors. It aims to help change the current status by providing shared research facilities and create a network for collaborative discourse fueled by academic communities, arts and science communities, and industry.

Kiko is a 4th year art student at the UCSC Art Department working with a range of contemporary print methods and specializing in digital printmaking. She is also interested in installations, especially large scale, and site specific environments, as well as other areas of intermedia that combine print, digital elements, and sculpture. Kiko is also very inspired by the collaborative aspect of Art and the innovation it facilitates, leading to her work for the past year to create collaborative art opportunities at Stevenson’s annual Rock n Roll on the Knoll concert, as well as becoming more involved with the print studios on campus. Kiko’s work reflects ideas of youth and digital culture and how it relates to societies ways of thinking, as well as the playful abstract renditions of her own world.

Her residency is co-sponsored by the Social Practice Arts Research Center (SPARC). This is co-directed by Professors Dee Hibbert-Jones, EG Crichton and Elliot Anderson and fosters knowledge exchange and project building between artists, scientists, the public and others with a vision towards active social and environmental change. Working across disciplines, it aims to engender and support collaborations and projects that have a local, national or international impact on the public sphere.

 

 

The Human Code: Race and Information in a Genomic Age

The Human Code
Race and information in a genomic age

By Ian Evans 11/15/12

City on a Hill Press

When UC Santa Cruz researchers and graduate students published on July 7, 2000 the first record of a person’s whole DNA sequence, or genome, the field of genomics was still young. Utilizing a UCSC designed online DNA database, this international effort cost over $100 million and was known as the Human Genome Project (HGP).

That project changed the world.

“[The HGP] is the first time that humanity got its glimpse of the DNA message that had been passed on for so many aeons,” said David Haussler, UCSC professor of biomolecular engineering and director of The Center for Biomolecular Science and Engineering. Haussler introduced “Genomics Gets Personal: Property, Persons, and Privacy,” a recent panel on genomics which took place at UC San Francisco on Sept. 27.

Hosted by UCSC, panelists discussed the use of genetic information and its effects on society today.

Haussler was at the center of UCSC’s research in the HGP and its success in providing free genomic information online. Since then, the speed and cost of sequencing, or decoding, the human genome code of four proteins — A, T, C and G — has improved exponentially.

“The field of genomics and personalized medicine is moving at an extraordinary rate,” Haussler said. “What cost 12 years ago [an] excess of $100 million next year will cost $1,000. One hundred thousand times improvement in little over a decade … the social implications of that are enormous.”

Since the HGP, which was officially completed in 2003, UCSC has continued its renowned work in genomics, coming out with world famous research and technology including the Cancer Genomics Hub (CGHub), a database developed by Haussler to store genomes of cancerous tumors to better understand what causes different types of cancer and how to treat them.

“Genomics is a huge subject at UCSC,” said Brandon Allgood, UCSC alumnus and director of computational science at Numerate Inc., a drug design and technology company. “It is a world leader in some respects.”

Allgood said one of the reasons for the university’s leading role in the field is its commitment to interdisciplinary studies, especially between the sciences and social sciences. Jenny Reardon is at the forefront of connecting those subjects.

Reardon is a faculty affiliate of the UCSC Center for Biomolecular Science and Engineering (CBSE) and the creator and co-director of the Science and Justice Research Center at UCSC, a community dedicated to bridging the gap between the sciences, social sciences and humanities. She is the author of “Race to the Finish: Identity and Governance in an Age of Genomics,” which covers the history and controversies that encircled one of the most controversial social issues in genomics’ past, the Human Genome Diversity Project (HGDP).

Separate from the HGP, the HGDP aimed to record the genetic variation within the human species by sampling genetic information from isolated human populations. By researching isolated populations, researchers hoped to track humanity’s early movements and settlements to learn more about the origin of the human species, develop drugs specific to diseases affecting certain populations and to study the enormous amount of diversity that exists among humans.

The project was quickly challenged by indigenous groups who were concerned that their genetic information, separated and categorized, would be misused in a way that would have a negative impact on indigenous communities. Justified by a history of past oppression and inequality, many indigenous peoples were concerned with the HGDP’s overall mission, communication efforts, as well as other concerns.

“In the long history of destruction which has accompanied western colonization we have come to realize that the agenda of the non-indigenous forces has been to appropriate and manipulate the natural order for the purposes of profit, power and control,” wrote members of the Indigenous Peoples Council on Biocolonialism, a meeting of indigenous leaders from the United States, several Central and South American countries and Canada, according to the Indigenous Peoples Council on Biocolonialism’s website. “We particularly oppose the HGD Project which intends to collect, and make available our genetic materials which may be used for commercial, scientific, and military purposes … We hold that life cannot be bought, owned, sold, discovered or patented, even in its smallest form.”

Reardon said the project came under scrutiny for, among other things, biocolonialism and racism.

“It was called the vampire project, a project interested in sucking the blood of indigenous people more than it was interested in their livelihood,” Reardon said, acknowledging the painful history of colonialism and eugenics, the widely rejected practice of promoting certain people or traits and rejecting, sometimes violently, less desirable people or traits. “The trauma of the past has been strong.”

Reardon said this was not the intention of the scientists involved and that the scientific community has worked hard to address these concerns.

“These well meaning scientists, many of whom, like Mary-Claire King, were committed to issues of human rights. Bob Cook-Deegan was a member of Doctors Without Borders,” Reardon said.

Robert Cook-Deegan is a research professor in genome ethics and law and policy at Duke University and author of “The Gene Wars: Science, Politics and the Human Genome.” When the HGDP first began, Cook-Deegan played a major role in the project and in one of its first controversial encounters with society.

“We made one pretty big mistake in the original paper that proposed doing what became known as the HGDP,” Cook-Deegan said. “I think I’m the person who put the term ‘vanishing opportunity’ into the title of that paper, and in retrospect that was a pretty stupid turn of phrase.”

Cook-Deegan said it was unintentional that the term implied that collecting data from dying populations was more important than actually helping them survive.

“The foreseeable consequence of that terminology ‘vanishing opportunity,’ was that [people thought we believed] it was more important to study human origins than to right the wrongs and to focus on human rights. And of course we don’t believe that, but we didn’t explicitly say that, and we should have,” Cook-Deegan said. “I did view that as a mistake.”

Even as the field of genomics still reels from its controversial past, it continues to pervade society and bring to light new concerns.

With the completion of the Human Genome Project, the cost of sequencing genomes dramatically decreased as technology became cheaper, faster and better. This has allowed more and more data to pour in, but one of the biggest questions posed at the panel and that genomics faces today is: who gets to look at all that information? Should it be exclusive to the experts or be open to everyone?

“There are two philosophies,” said Cook-Deegan, who was one of the four panelists. “One is, share only the stuff that we kind of know how to interpret now, and that is under the framework of ‘this is a great big genetic test’ … People who are used to the way of the web, and the way that we think about information now don’t like that because there is an intermediary there who is deciding what information is shared with the individual.”

Ryan Phelan, another panelist and the creator of DNA Direct and founder of Direct Medical Knowledge, what became the backbone to the online medical site, WebMD, said people have never had open access to information in such a way.

“What has happened is the internet. What took 30 years to get WebMD to be ubiquitous, it is now going to take us 5–10 years to get genomic information ubiquitous,” Phelan said. “There’s a whole continuum here of information to the patient, to the doctor, for decision making or for research.”

Panelist Gail Jarvik, the head of the department of medical genetics at the University of Washington School of Medicine, said in her experience, access to uncertain or unknown genetic information can be harmful to patients.

“I have had very unhappy experiences with just giving people variants of uncertain significance back for breast cancer and having their doctor decide to take off their breast,” Jarvik said. “Even though I very specifically said, this is likely to be benign, I don’t think this is a breast cancer causing mutation, the doctors say well you have breast cancer, you have a mutation in your breast cancer gene, off with your breast.”

However, John Wilbanks, a panelist who runs the Consent to Research Project, which gives people an easy way to donate their health data to a database for researchers to use and analyze, said although there will be mistakes as genomics moves forward, the data will be public with or without the consent of experts.

“As people who are sick or have family members who are sick can access these technologies outside of the institution, they’re going to,” Wilbanks said. “A lot of bad decisions are going to be made as a result of that but if you are not part of the existing clinical research system anyway, this is a ray of hope.”

More progress can be made by making genomic data easy to donate and available to the public on free databases, Wilbanks said, than by allowing only a select few scientists to access it.

However the information is accessed, there is money to be made in the future of genomics. Drug companies are already scrambling to get ready to provide customers with sequencing technology and drugs developed to be effective for genomes.

Phelan spoke about the Chinese genome sequencing company BGI–Shenzhen’s acquisition of Complete Genomics, another genome sequencing company based in Silicon Valley. He said corporations are already bracing for the future of genomics.

“These are companies, large companies making big plays in the translation of these technologies into the consumer market,” Phelan said.

As far as the future of personalized genomics goes, Cook-Deegan said he is cautious about making predictions. People will get their genomes sequenced, but why? And what will happen to that information? That, he said, remains to be seen.

“We’ve got all these reasons [for getting our genes sequenced]. We’ve got pharmacogenetics as a reason, we’ve got ancestry as a reason, we’ve got genetic risk of a foreseeable condition as a reason to get your genome done, and you’ve also got the fact that it’s a cool thing to talk about at cocktail parties,” Cook-Deegan said. “That’s what’s driving it right now, but we’re going to move beyond that.”

As for the social issues, Haussler said there will continue to be important debates about how genomics can best be integrated into society.

“I can only do my research in the context of society,” Haussler said. “It is absolutely necessary that we have a social contract — that society understands the value of the research so that it is maintained, funded and enabled. A lot of this, from a society’s point of view depends on what the benefits of genetic research are. As those grow, I think that a compromise will become more obviously necessary. When personal genomes are really saving lives and really helping people live fuller, longer, better lives, healthier lives, compromises will be made on some of these social issues.”

*In the original print version of this story, Mary-Claire King’s name was spelled Mary Clair King. This was corrected for this online version*