Constituting the Health Research Participant: Value, Assetization and Data Practices in Health Research

Session Submission Type: Open Panel

Abstract

The rise of genomic research, big data, and practices that attempt to harness the research potential of routinely collected patient data, present a complex landscape where the role, status and value of the patient or citizen as a research subject is configured in numerous ways. STS scholars have drawn attention to the potential for health research participation to constitute exploitation, empowerment as well as part of contemporary citizenship, while also acknowledging the significance of social context. Others have considered the results of participation in terms of the (bio)value attached to bodily samples through, for example, commodity exchange or the assetization of patients, samples and/or data. Participation in health research has multiple forms, from trial subject to patient advisory group member, from biobank donor to the infinitely searchable database entry. Each of these forms could be understood differently, complicated further by research practices becoming more globally collaborative and thus dealing with multiple local contexts. To date, however, little work has explored how participation is understood across these local and national borders. This panel examines the varying ways the contemporary health research participant is constituted, valued and assetized from a global perspective. We invite theoretical and empirical contributions from single and multiple healthcare settings to facilitate discussion within and across national borders to explore the changing landscape of health research participation, citizenship and (bio)value.

Sub Unit

• Papers for Open Panels / Constituting the health research participant: value, assetization and data practices in health research

Individual Presentations

• Empowering or Exploiting Donors? Australian Stakeholders’ Perspectives on the Ethical and Regulatory Challenges Associated with Biobanking - Miriam Wiersma, Sydney Health Ethics; Ian Kerridge, Sydney Health Ethics; Lisa Dive, Sydney Health Ethics; Edwina Light, Sydney Health Ethics, University of Sydney; Wendy Lipworth, Sydney Health Ethics, University of Sydney

• Participation and the "Good" Citizen: Using Routine Health Data for Research in National Health Service England - David Wyatt, Kings College London; Christopher McKevitt, King's College London

• Speculative Biodata, Materializing Value - Mary Ebeling, Drexel University

• The Ethics of Biomedical Research in Low Earth Orbit: The “Twins Study” on the International Space Station - Paola A Castano, Cardiff University School of Social Sciences

Session Organizer

• David Wyatt, Kings College London