French DNA: Trouble in Purgatory (review)

Paul Rabinow. French DNA: Trouble in Purgatory. Chicago: University of Chicago Press, 1999. viii + 201 pp. $25.00; £17.50.

In the spring of 1994, a "scandal" shocked the small world of French genomics. As reported in the media, the DNA from French diabetic families that had been collected by scientists at CEPH (Centre d'Études du Polymorphisme Humain, the most renowned genomics research center in the country) was on the verge of being sold to an American biotechnology company called Millennium Pharmaceuticals. French DNA takes this affair as an entry into contemporary research in human genetics as shaped within the context of what may be called a French biopolitical culture. As one talks about Frenchness, keywords easily flock: state, bureaucracy, universalism, human rights, citizenship, et cetera. French DNA is about all of them, but it provides an original picture of the country's biomedical landscape.

In 1994, Paul Rabinow was a participant observer at CEPH, the personal guest of Daniel Cohen, then director of the laboratory. CEPH was currently celebrating a major scientific success: with the backing of AFM (the French Muscular Dystrophy Association), CEPH scientists had built a "factory to find genes" and had beaten American genome centers in the race to produce the first map of the human genome. As recounted by Rabinow, this "assemblage" was unusual. AFM is a patients' advocacy group that follows a very American way of doing things: organizing large fund-raising campaigns, and supporting biologists in order to advance genetics rather than waiting for physicians to improve the (still hopeless) clinical management of muscular dystrophy. Under the lead of a skilled organizer and former electrical engineer, the society has departed from what Rabinow labels the "famous French handicap of resisting innovation" (p. 55), hoping for decisive progress in DNA-based technologies.

Although human-genome research and medicine are at the very center of the events Rabinow followed, French DNA is neither a book on genetics nor a book on medical practices. It is a book on hopes, technologies, and power. What the reader is invited to visit is a "purgatory"--a world of ambivalence and ambiguities--that pertains to the changing relationship between the biological sciences and society. It is received knowledge that our system of biomedical research--once centered on academic, publicly funded, and discipline-oriented science--is evolving into an integrated form of research and development, conducted in private (often for-profit) multidisciplinary institutions. French DNA accordingly deals with start-ups, state research agencies, DNA appropriation, patients' groups, and bioethics.

Rabinow is knowledgeable enough about France to have a good sense of the uneasy relationship that French scientists have established with the new world of biotechnology. Trouble in Purgatory could also be subtitled "Trouble at CEPH." In the spring of 1994 the principal investigator of the center's diabetes project, Philippe Froguel, opposed a putative deal with Millennium that would give the American company--in which Daniel Cohen had a personal financial stake--access to CEPH's DNA collection and a head start of one or two years in the race for genes predisposing to diabetes. From the anthropologist's perspective, this was "a cockfight" (p. 141): Froguel wanted to dethrone Cohen; he received support from scientific and governmental circles that resented the role of private institutions like AFM and CEPH, but he failed. Troubles nonetheless ensued. Cohen's style of management, as well as his ties with American business, shattered an institution whose public image was linked to an ethics of donation, benevolence, and personal relationship with patients and families. Cohen eventually left CEPH to create his own genomics start-up.

One major pattern explored by Rabinow concerns the public/private boundary and the meaning of "money" and "markets." Although sharing a "moral economy" of pure (i.e., public) research, many scientists in the country are forging links with industries and financial markets, signing contracts, or patenting DNA. Hence the conflict over questions of who may appropriate DNA collections...