Roberto Abadie has written an absorbing ethnographic study of clinical trials that focuses not on the clinic or the clinicians, the science or its development, but the research participants in phase one trials (the first stage of testing in humans). As he notes in the text, this is probably the first study to do so and, in doing so, his work fundamentally adds to our perspectives on such trials, biomedicine and the pharmaceutical and para-pharmaceutical industries. In addition, the book contributes to a growing and increasingly vocal body of work that takes anthropological or otherwise empirical perspectives on bioethics.
The mainstay of the book's focus is a group of individuals who have taken part in a large number of phase one trials - in some cases as many as 80. These trials test the toxicity of new drugs in human beings. Abadie explores the motives, perceptions and feelings of those who volunteer for such trials. The notion that the participant's body is being commodified and that "voluntary" participation in such trials should be seen as a modern form of work is central to the arguments he advances.
The test subjects themselves, particularly the unusual sub-group of Philadelphia anarchists who make up many of this study's participants, see their activity as a form of labour, albeit one that involves them in a "mild torture economy". Thus the participants' views of their own actions and motives are centrally implicated in this commodification of the body, particularly in so far as their professional self-discipline, and oblique evasion of certain trial protocols, is valuable to the trial coordinators. This perspective runs counter to the bioethical sacred cow of freely given informed consent and Abadie shows the industry's resistance to this view, even as it derives benefit from it.
The logic of the Philadelphia anarchists involved with phase one trials is an intriguing aspect of this study. The basic premises of anarchism would seem to militate against involvement with such trials, and while certain lines in the sand are drawn - such as refusing to participate in the testing of psychiatric drugs - most other drugs seem to be acceptable.
Through coming to see their activity as work, the political perspective of these "professional guinea pigs" came to the fore. The result was a zine - Guinea Pig Zero, edited by Robert Helms, one of the participants in Abadie's ethnography - and later the collective action by a group of trial volunteers/workers.
Abadie and Helms do their best to suggest that this organisation was largely the result of action by "normal", relatively apolitical research participants, but it seems significant that no such events have occurred elsewhere. Similar conditions have occurred elsewhere, but what was highly specific to this case was the participants' view that offering their "bodies and its operating fluids" is a form of labour. While direction and leadership in the traditional sense may not have been offered by Helms, his political views and the mode of his political engagement must have influenced the unfolding of the situation.
For the good of further reflexive analysis, I would have been fascinated to read a discussion of how the research participants construed their participation in Abadie's ethnographic study. I have little doubt that for them this was an explicitly political act. While less physically invasive than a drug trial, ethnographic research nevertheless deeply involves the researcher in the lives of the research participants. Indeed, Abadie lived with the Philadelphia anarchists for some time.
The result is perhaps something of a commodification or objectification of their thoughts, views and feelings. What the participants thought about this before, during and after research and how Abadie responded could have been a fascinating addendum to what is already a fascinating description of the subculture of regular drug-trial volunteers.
The Professional Guinea Pig: Big Pharma and the Risky World of Human Subjects
By Roberto Abadie. Duke University Press. 216pp, £62.00 and £15.99. ISBN 9780822348146 and 48238. Published 25 October 2010
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