Two members of the Lab (Mauro Turrini & Lorenzo Del Savio) will convene a session at the 4S/EASST 2016 Conference (Barcelona) about IT & Data in Healthcare and Medicine. Please circulate!
Call for abstracts
4S/EASST 2016 Conference (Barcelona)
Submission from 7-12-2015 to 21-2-2016
Track: Biomedical sharing economies
Convenors: Mauro Turrini & Lorenzo Del Savio
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, which are complementing, and in some cases competing with, experiment-based approaches. An increasing number of crowdsourcing internet platforms, such as PatientsLikeMe, OpenHumans, Personal Genome Project, aggregate participants to generate biomedical datasets, often framing “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, and deepening democracy 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, including whether and how their values and beliefs enter research agendas, as well as more theoretical papers engaging with the political economy of these platforms.