Conceptualising health research participation in the era of big data
The rise of big data in health care research, particularly when incorporated into health care delivery, presents a complex landscape where the role, status and value of the patient or citizen as a research subject is configured in numerous ways. Social science scholars have drawn attention to the potential for health research participation to constitute exploitation, empowerment or even a form of contemporary citizenship. Others have considered the results of participation in terms of the (bio)value attached to bodily samples through, for example, commodity exchange or the assetisation of patients, samples and/or data. Emerging big data research practices add another dimension to these issues. They raise questions about how we make sense of health research participation in the change towards datafication of human health, and the automation of data agglomeration and analysis. Such practices also raise questions about their governance by prompting us to ask whether existing local and centralised ethical regimes are fit for purpose.
Considerations of related discourses, practices and oversight are vital as ‘participation’ in health research has multiple forms, takes place in diverse settings, and is sponsored by different kinds of entities. From trial subject to patient advisory group member, from biobank donor to the infinitely searchable database entry, each of these forms are affected in some way by emerging big data practices. Participation is complicated further by research itself becoming more globally collaborative and thus dealing with multiple local contexts.
This Collection seeks to examine the diverse ways big data and health research participation converge and are co-produced with local and centralised approaches to governance. Drawing from the fields of sociology, anthropology, science and technology studies, health research, empirical ethics, bioethics, and critical data studies, we ask authors to engage with these two overarching questions: How is the health research participant constituted, valued and assetised in the era of big data? What are the implications of this for health research practices and/or policy making?
Editors
-
David Wyatt
King's College London, UK
-
Matthias Wienroth
Northmbria University, UK
-
Christopher McKevitt
King's College London, UK
