"Rabinow has written an interesting book about the failed negotiations between a French genetics lab, the Centre d'Etude du Polymorphisme Humain (CEPH) and Millenium, an American biotech company that wanted its family DNA history on diabetes and obesity. This book is not about the science of molecular biology—it's a look at how the different ethics of France and America affect the way people and politicians feel about the sanctity of DNA."—Library Journal
An excerpt from|
Trouble in Purgatory
by Paul Rabinow
In Paris, during the winter and spring of 1994, what was alternately characterized as a quarrel, a dispute, a struggle, a debate, a battle, or a scandal simmered and then flared up to a white-hot intensity before dissipating, as such things tend to do in Paris, as a government commission was formed to study the matter and the summer vacations approached. Immediately at issue was a proposal to institute a formal commercial collaboration between an American start-up biotechnology company, Millennium Pharmaceuticals, Inc., and France's premier genomics laboratory, the Centre d'Etude du Polymorphisme Humain (CEPH). During the early 1990s, the CEPH, led by its dynamic scientific director, Daniel Cohen, had conceived of and implemented a highly innovative and effective strategy to map the human genome. Cohen was proud to announce in December 1993 that the CEPH had won the race to produce the first physical map of the human genome. When he crafted his victory announcement, with the substantial aid of a New York public relations firm, Cohen made special efforts not to humiliate the heavily government-subsidized American laboratories whom he had just beaten.
Among the leaders of the American genome mapping effort was a Massachusetts Institute of Technology (MIT) scientist named Eric Lander, a cofounder of Millennium. Daniel Cohen was also one of the cofounders of Millennium. Scientists from the CEPH had been discussing joint projects with scientists from Millennium throughout 1993. Scientists from the CEPH went to Cambridge to visit Millennium scientists and hear of their plans. The French government had been informed of, and approved, the idea of a commercial collaboration between the CEPH and Millennium. The core of the collaboration was to be a project to discover the genetic basis of non-insulin-dependent forms of diabetes. Diabetes is a major health problem in the affluent countries, and there is good reason to believe that insights about diabetes could well be applied to obesity. The public health implications are important. The potential market is extravagant. In order to identify genes that might be involved in these or other conditions, one needs as large a pool of families as possible. An examination of inheritance patterns of these families would facilitate the search for so-called candidate genes. Researchers at the CEPH had assembled a respectable collection of families, some of whose members suffered from non-insulin-dependent diabetes. Such collections are valuable, because they are costly and time-consuming to assemble. Millennium proposed collaborating with CEPH scientists on the basis of the CEPH's family material. In principle, CEPH scientists were interested in such a collaboration because Millennium was developing potentially rapid and powerful new technologies to identify genes (although it was cautious about entering into this new terrain). Finally, Millennium was well funded, and the 1990s was a period of budget cutbacks for French science. A team from Millennium went to the CEPH in February 1994 to finalize the agreement. Things came apart; confrontation, polemic, and confusion ensued. The French government moved to block the deal. The problem, explained the government spokesman, was that the CEPH was on the verge of giving away to the Americans that most precious of thingssomething never before named in such a mannerFrench DNA.
French DNA's narrative is structured around these events set against the background of contrastive developments in the United States (the AIDS epidemic, the biotechnology industry, the Human Genome Initiative), the great specter of a possible future. In the United States, during the latter half of the 1970s, intense debate had raged about the safety (as well as ethical and philosophical implications) of what was then referred to as "recombinant DNA." An unprecedented moratorium on research devised and shepherded by leaders of the scientific community succeeded in keeping government legislation at bay and basically allaying public fears focused on the safety issue. During the early 1980s, debate shifted to the status of scientific, commercial, and ethical relationships between university- and government-based research and the nascent biotechnology industry. By the end of the decade, in the United States, the landscape had been effectively reshaped; although debate and discussion continue, a large biotechnology industry funded by a massive infusion of venture capital and an equally significant amount of capital from large, often multinational pharmaceutical companies had become an established force. Millennium was not atypical of such companies; it was staffed by prestigious scientists and physicians with affiliations with Harvard and MIT and was initially funded by venture capital. From their perspective, considering an alliance with the CEPH seemed strategically astute and perfectly ordinary. They had interpreted the actions and statements of members of the CEPH during the months of preliminary contacts and negotiations as indicating that the French situation was changing in a similar fashion. In fact, this diagnosis was premature.
Arriving at the CEPH immediately after the announcement of their mapping victory, I was faced with the question of what should be the focus of my study. My entry was not a reenactment of the traditional ethnographic arrival scene on some exotic site. I was already fluent in the language, had previously lived in France for years, had just completed a complementary study of an American biotechnology company and the invention there of a powerful molecular tool, and had immersed myself in the debates and inquiries swirling around the Human Genome Initiative and its scientific, technological, ethical, legal, social, political, cultural, theological, and no doubt other dimensions. The allocation of a percentage (3-5%) of the American genome budget to social, ethical, and legal issues made it, in the words of one of its directors, "the largest ethics project in history." I was intrigued by the extravagance of this phenomenon. There had been a lot of talk of "the book of life," "the holy grail," and the like. In the early years, conferences held outnumbered genes localized. Because the genomic science itself had been successfully cordoned off from "ethical and social" scrutiny, such scrutiny was reserved only for "consequences."
At the CEPH, I soon decided that I would not concentrate on the CEPH's past triumphs. There were two reasons for this: first, I felt that there would be historians of science who would be better trained to do the archival work; second, I felt that the "genius" of the CEPH was its ability to make the next move in a manner that brought the elements into an innovative assemblage. Hence I decided to concentrate on the four research projects (aging, cancer, AIDS, parasite genomes) that Cohen had inserted (some would say imposed) into the margins of the CEPH. Introducing an anthropologist was a sort of fifth research project. I plunged first into familiarizing myself with the current molecular technology in use at the CEPH. Then the Millennium crisis happened. I kept both the experimental sites and Millennium balls in the air for the duration of my stay. Other factors intervened such that this book has taken the shape it has; that is to say, the disruption and its suite of consequences became the focus of my study.
French DNA's focus is on a singular instance of a multidimensional crisis in 1994. The elements of that crisis included the felt need to transform an extremely successful and innovative large-scale scientific and technological apparatus in the face of international competition; pressing claims that the work done at the lab (and its associated allies) was of the utmost consequence not only for the future of French science but for the future well-being of humanity; acute concerns, widespread in the French cultural/political milieu, over the legitimate range of experimentation in the biosciences expressed in a vocabulary of bioethics; ferocious conflict over potential means of financing the work; personalized confrontations between leading scientists over what it meant to be a scientist today, pitting against each other (at a more general level) contrastive modes of subjectivation of science as a vocation.
French DNA is about a heterogeneous zone where genomics, bioethics, patients groups, venture capital, nations, and the state meet. Such a common place, a practiced site, eruptive and changing yet strangely slack, is filled with talk of good and evil, illness and health, spirit and flesh. It is full of diverse machines and bodies, parts and wholes, exchanges and relays. For those mortally ill, or told they are so, all this discourse, all these diverse things, can produce a good deal of anxious waiting and solicitation. It can also produce a range of other effects and affects in the world. I became intrigued by the futures being carved out of the present. Their representations ranged from ones full of dangers to others of a potential luminosity. Today, as yesterday, partisans of both visions abound. Partisans that they are, they find their antagonists' arrogance, misplaced emphases, failures of nerve, and sheer blindness trying. Amid all the discord, however, all parties agree that the future is at stake and that there is a pressing obligation to do something about it.