Silent rationing and new collectives: People and publics in personalised medicine
Professor Barbara Prainsack, University of Vienna
Personalised Medicine, understood as the tailoring of prevention, diagnosis, and treatment to the characteristics and needs of specific patients, is often seen as making medicine more individualistic and threatening practices and institutions of solidarity. The better our healthcare systems can capture and analyse individual differences, the greater the number of categories that can be used to stratify patients into ever smaller groups. Such increasing segmentation of the patient population can give rise to practices of what I call silent rationing, and it makes it difficult to summon a common “we” (Prainsack & Van Hoyweghen 2019). At the same time, Personalised Medicine also creates and mobilises new collectives: Besides the epistemic openness of the person, whose individual characteristics become meaningful and actionable only in relation to others, Personalised Medicine provides an opportunity to integrate information on people’s bodies with information on their social environments. Last but not least, building upon the work on insurance by Ine van Hoyweghen and colleagues, I will argue that the risks that we all face in the context of data-driven surveillance in healthcare could give rise to new practices and institutions of solidarity and collective action.
Barbara Prainsack is Professor of Comparative Policy Analysis at the University of Vienna. At the University Vienna she directs the Centre for the Study of Contemporary Solidarity (CeSCoS). Her work explores the regulatory, social and ethical dimensions of bioscience, biomedicine and forensics with current projects focusing on personalised and “precision” medicine, on citizen participation in science and medicine, and the role of solidarity in medicine and healthcare. Her latest books include: Personalized Medicine: Empowered Patients in the 21st Century? (NYU University Press, 2017); Solidarity in Biomedicine and Beyond (with Alena Buyx, Cambridge University Press, 2017), and Genetics as Social Practice (ed. with Silke Schicktanz and Gabriele Werner-Felmayer, Routledge, 2014).