This post is part of Bill of Health’s ongoing blog symposium on Critical Studies of Citizen Science in Biomedical Research. Here, Dana Mahr examines claims of empowerment in participatory health platforms and the implications of this for participants and biomedical research more broadly. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.
By Dana Mahr
A new social contract for health?
Since the beginning of the 21st Century, self-reported experiential knowledge of patients (alongside other data) has often been communicated and promoted as an untapped treasure for both medical research and patient empowerment (Goetz 2008). Although this portrayal lacks historical and sociological accuracy (the sharing of experience has always been part of medical practice; e.g. the process of anamnesis) it informs a prominent discourse on so-called “P4-medicine”: “prediction”, “prevention”, “participation” and “personalization” (Hood 2013). Within this coordinate system of concepts, practices of participatory self-reporting (via fitness tracking, information sharing in social health networks, etc.) are seen as steps towards a “New Social Contract for Medical Innovation” (Horne et al. 2015).
Advocates of this social contract claim that it “tackle[s] the rising tide of chronic diseases and transform[s] healthcare from a disease-oriented provision to a true health maintenance service” (Horne et al. 2015). The core element of this new social contract is the collection and use of large amounts of participatory generated data for the democratization of biomedical research. The growing variety of online participatory medicine platforms can be interpreted as part of this trend. Other relevant aspects, however, are market interests, bio-governmentality, and people’s curiosity for self-exploration, self-presentation, and the urge to compare oneself with others. This is most evident in direct-to-consumer (DTC) genetic testing. The slogan of the DTC company 23andMe is telling in this respect: “Welcome to you”. Continue reading