Clinical Trials as a case for participation

I’m reading Roberto Abadie’s book on the class of people known as professional guinea pigs: people who are paid to participate in clinical trials and who make a living (or what passes for one) doing trial after trial. The idea of this as a form of work (or labor, or job) bears some nice resemblances to the other cases we are considering, such as participation in Amazon Mechanical Turk or the life of the free lance journalist. The book starts with the claim that many of these guinea pigs recognize their participation as a kind of labor, and a form of labor that consists in suffering for money and a kind of work that doesn’t produce anything. It would be interesting to apply our framework here: what is the resource exactly?

Compared to other forms of participation in science, where the inclusion or engagement of people is presumed to be positive, democratizing, etc. this is a clear case where participation is, if not coerced by social circumstances (poverty, joblessness, lack of skills, ease of access to money etc) then at least a morally suspect version of participation. In terms of our analysis, there is obviously no participation at the level of goal setting or at the level of task design (i.e. clinical trial design)–only participation in the execution of the task. What’s interesting here though is the creation of an OP by an FSE (pharma companies, who do a ton of work to locate and enroll trial participants) which includes a sub-OP of “professional guinea pigs”–people who come back over and over, communicate with each other, organize and resist.