Empirical and theoretical perspectives on biomedical data sharing platforms, their participatory strategies and how they affect power and inclusion in biomedical research and health care.
Digital technologies are reducing the cost of production and sharing of bio-data, stimulating new approaches to healthcare and biomedical research. On one hand, personal data may be adopted as a means to devise more precise strategies to diagnose, prevent, and treat diseases, even bypassing the medical mediation. On the other, non-professional citizens are recruited for research tasks such as data and sample collection, data coding, and problem solving in data-intensive large scale biomedical projects. An increasing number of crowdsourcing internet platforms aggregate participants to generate biomedical datasets. They often frame "lay" participation in terms of patient empowerment, healthy citizenship, research activism, or altruistic sharing, in line with other forms of contemporary sociality. Some of these platforms embody new forms of valorisation that put at work patients and healthy volunteers. This track session explores issues of patient empowerment, biodata ownership, privacy and control in these biomedical sharing economies. The aim is to expound their potential for making healthcare and biomedical research more inclusive, broadening healthcare and scientific citizenship as well as their capacity of furthering exclusion and creating new hierarchies and forms of exploitation. We seek papers that address questions pertaining expectations, motivations and experiences of the relevant actors, as well as more theoretical papers engaging with the political economy of these platforms.