The Interpretive, Affective, and Ethical Work of Big Data in Health Care and Medicine - I

Abstract

In the age of big data, ever wider domains of people’s lives are “datafied,” which renders more and more information—at least in principle—usable for healthcare purposes. Yet, deriving insights for clinical practice and individual life choices, and deciding what data or information should be used for this purpose, poses new challenges. Often the quality, meaning, and actionability of diverse forms of molecular, genetic, lifestyle, and digital data is unclear. Interpretation requires tremendous time, resources, and skill, and raises urgent ethical, political, and practical questions. STS scholarship has shown how data does not speak for itself, how all knowledge is socially and temporally situated, and how data is never produced in isolation from other socio-political processes. Drawing on scholarship from critical data studies, social studies of science and medicine, medical ethics, and feminist approaches to data and justice, this panel invites contributions that explore emerging challenges surrounding the interpretive, affective, and ethical work of big data in healthcare and medicine. What forms of labor are emerging along within personalized medicine and big data, and for whom? What challenges and interruptions arise when deriving insights for clinical practice and individual life choices? What ethical and social justice concerns are embedded in, or emerge from, practices of datafication and data innovations? In particular, we welcome explorations of alternative practices of data collection and analysis, proposals for a more reflexive, accountable negotiation of the role of big data in health care and medicine, and accounts which follow how these questions are being negotiated in practice both in and outside of homes, clinics, and laboratory settings.

Chair

• Meg Martin, University of California, San Francisco

Individual Presentations

• Exploring and Supporting Articulation Work in the Molecularization of Cancer Care - Anne Kerr, University of Leeds; Julia Swallow, University of Leeds; Choon Key Chekar, University of Leeds; Sarah Cunningham-Burley, University of Edinburgh; Emily Ross, University of Edinburgh; Chowdhry Sue, University of Edinburgh

• Institutional Shadow Bodies: Problems in Mental Health Information Seeking - Megan Bogia, Harvard University; Chloé Nurik, University of Pennsylvania

• The Use of Prescription Drug Monitoring Programs to Enroll Physicians into Policing Addiction - Mustafa Ibraheem Hussain, University of California Irvine; Geoffrey C. Bowker, University of California, Irvine

• Wearing Many Hats: Stakeholder Collaboration in the Formation of Digital Therapeutics - Meg Martin, University of California, San Francisco

Session Organizer

• Amelia Fiske, Kiel University