 | Andrew Hoffman PhD candidate - Social Studies of Medicine, McGill University |
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03.02.2014-28.03.2014
Personalizing Effectiveness: Reshaping Research & Regulation in Post-Genomic Cancer Medicine
My primary objective while at the Brocher Foundation is to prepare and refine two article manuscripts for peer-reviewed journals. These articles, which will also be included as chapters in my PhD dissertation, will be based on analyses of my original fieldwork data and secondary data analysis. The first article will be submitted to Health: An Interdisciplinary Journal for the Social Study of Health, Illness, and Medicine, and examines meeting transcripts of the Secretary’s Advisory Committee on Genomics, Health, and Society (SACGHS) from 2004 through 2010, which ultimately formed a task force on comparative effectiveness research and helped to establish national priorities for CER on personalized genomic medicine in the U.S. This article aims to historicize the notion of ‘clinical utility’ as the standard by which (genomic) technologies are judged as being useful. It also focuses on how notions of clinical utility changed over the course of the Committee’s meetings, and how various stakeholders on the Committee used rhetorical tactics to either promote coherence or else to sustain uncertainty around precise definitions of what clinical utility can actually mean. The second article offers an ethnographic account of a stakeholder engagement project that I studied at one of my four field sites in the U.S. Its purpose is to offer stakeholder engagement as an emblematic instance of how the complexities and uncertainties surrounding cancer genomic medicine have engendered new approaches to gathering and evaluating clinical evidence, and, in turn, how these new evidentiary approaches recursively shape collective understandings of what it means for such tools to have ‘value’ in contemporary society. Drawing on John Dewey (1922) and the more recent scholarship of Fabien Muniesa (2012), I argue that notions of ‘value’ are not the province of discrete disciplines – i.e. financial value in health economics or social values in bioethics – but rather that methods of rendering things valuable are in fact practices and processes that involve many different social actors who bring many different concerns to bear on the creation of policies that ultimately dictate the types of health care interventions individuals ultimately encounter when they are sick. A secondary objective is to collaborate with colleagues in the unit of Technology and Social Change at Linköping University in Sweden on the aforementioned issues of value and valuation in health care. There are substantial conceptual connections between the issues I address in my own PhD research and a large research project being conducted in Sweden by two senior Linköping researchers. Further discussions will help to indicate if sufficient data exists to carry out a comparative analysis between Sweden and the United States addressing the various ways that values become incorporated into the prioritization and conduct of clinical trials testing personalized genomic medicine technologies. I am confident that the details of this collaboration will be fleshed out by 2014, and that we will be able to move forward on this collaborative project (or else begin devising a new, related one) during my residency at the Brocher Foundation.
Andrew's PhD thesis is based on fieldwork he conducted with a consortium of seven research projects working to design, and put into practice, novel evaluative methods -- called comparative effectiveness research (CER) -- to assess whether new and complex genomic/personalized medicine technologies lead to better patient outcomes than less-expensive, more standardized, and better understood ways of diagnosing and treating patients’ diseases. His project approaches the nexus of personalized medicine and comparative effectiveness research as a de novo space in contemporary biomedicine where social, political, and ethical issues formulate the possibilities for new evaluative practices, which simultaneously transform the contours of medical practice, research and policy.
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