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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.