Paper short abstract:

Biomedical sharing economies: introductory remarks (with Lorenzo Del Savio). Empirical and theoretical perspectives on biomedical data sharing platforms.

Paper long abstract:

Digital technologies are reducing the cost of production and sharing of bio-data, thereby stimulating new approaches to healthcare and biomedical research. 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. This in line with other forms of contemporary sociality, e.g. social media. Personal data may be adopted as a means to devise more precise strategies to diagnose, prevent, and treat diseases, even bypassing the medical mediation. Also, 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.

A number of critical theories have been proposed to analyse these emerging biomedical sharing economies. We present theories of biolabour and theories of artificial scarcity, and discuss how they enlighten controversial features of such economies. We aim to reflect on how data sharing initiatives may make healthcare and biomedical research more inclusive, broadening healthcare and scientific citizenship but may also further exclusion and create new hierarchies and forms of exploitation.