Technology in Society 25 (2003) 193204 www.elsevier.

com/locate/techsoc

Research in the wild and the shaping of new social identities

M. Callon , V. Rabeharisoa
Ecole nationale superieure des mines de Paris, CSI, 60 Bd. Saint-Michel, 75272 Paris, cedex 06, France

Abstract This article examines new forms of techno-science-society interactions, in which non-scientists work with scientists to produce and disseminate knowledge. The term research in the wild is coined to name a special version of this new phenomenon. The primary illustration for this new form of research is connected with the Association Franc aise contra les Myopathies (AFM), the history of which is particularly suitable for exploring certain mechanisms at work in the co-production of scientic knowledge and social identities. The article rst compares laboratory research with research in the wild, emphasizing patient interest in maintaining control over cooperation. It then notes the intimate interrelations between the construction of patient identities and the collective form of research in which they participate. Finally, it examines the role of genetics, both as it is integrated into the construction of the collective, and also into the production of mechanisms of exclusionthe reverse side of the constitution of a collective identity. 2003 Elsevier Science Ltd. All rights reserved.

1. Introduction In recent history, science studies investigations into the production of knowledge have focused on a number of noteworthy sites such as the laboratory, core issues and their controversies, and the instrumentation and interpretation of experiments. Even if tools have been designed to analyze relations between these sites and their environment, such as the boundary objects [1] or networks of translation [2], we cannot completely dismiss criticisms that such work is rather internal to science.

Corresponding author. E-mail address: callon@csi.ensmp.fr (M. Callon).

0160-791X/03/$ - see front matter 2003 Elsevier Science Ltd. All rights reserved. doi:10.1016/S0160-791X(03)00021-6

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Questions concerning relations between scientists and non-scientists, experts and lay peopleespecially in the production and dissemination of knowledgehave received little attention from the empirical or theoretical viewpoints, at least until quite recently. Yet this has become a central subject outside the science and technology studies community because of two major developments. The rst concerns economic markets. Briey, even if there are multiple markets and they are organized in different ways, all now share a common feature: users or consumers who take an ever greater role in dening demand, that is, in the conception of the products being offered to them [3]. This movement is reected primarily in the continual growth of the service sector in overall economic activity [4]. The services sector now accounts for more than 70% of all employment and a similar proportion of the GDP in all developed countries. Using a distinction proposed by Hirschman, we could say that markets function more and more according to the principle of the voice rather than that of the exit [5]. This does not imply that all users participate equally. First, only some are engaged or consulted. Second, because of technological lock-in and network externalities, consumers today are often prisoners of choices made before them by other economic agents [6]. Yet it is not wrong to say that consumers and their spokespersons are more and more active in the process of product consumption and consequently more and more present, even indirectly, in research and development activities. This coproduction so often described by economics and economic sociology implies, among other things, that the consumer is considered to be a source of knowledge and ideas, an expert in experiences. To make this cooperation and its implications intelligible, new theories comparing the rm to a knowledge processor have been put forward. These theories see consumers as actors in their own right in this collective process of the production and circulation of knowledge [7]. The second development relates also to the ways in which political decisions are made, particularly when concerned with questions involving the mobilization of techno-science. Consultation, participation, and public debate are some of the keywords enabling us roughly to describe this trend that has slowly been taking shape over the past two decades [8]. This trend is now clearly visible even in countries such as France where science and technology have always been considered nondebatable subjects. In the procedures that are being explored, the idea is not just to expand and enhance traditional mechanisms of representation and participation. As stressed by Sheila Jasanoff, what is at play is not a logic of representation but one of intervention, which enables groups simultaneously to discuss their identity and their expectations and to feed the research process with their own experience [9]. Groups that are concerned by particular techno-scientic developments are offered opportunities to express themselves and to progressively become stakeholders. The now widely used term co-production of science and society conveniently captures this phenomenon. Thus, whether we consider the market or politics, the same question seems to be raised: what are the forms, modalities, and consequences of engaging lay people whether they are concerned or notin the process of knowledge production that is

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mobilized in the design of new economic goods or in the political decision-making process. Studies aimed at better understanding the mechanisms and reality of this co-production are becoming available [1013]. In this article, we hope to contribute to this new eld of inquiry. More precisely, our objective is to suggest that it might be fruitful to consider concerned groups as (potentially) genuine researchers, capable of working cooperatively with professional scientists. In so doing, they invent a new form of research, which we propose to call research in the wild. We will outline some of the main characteristics of this new form of investigation and stress its contribution to the emergence of hybrid collectives, mixing humans and non-humans.

2. The French Muscular Dystrophy Association as a partner organization The illustrations to be used in this article are drawn from a study on the Association Franc aise contre les Myopathies (AFM) or French association of muscular dystrophy (MD) patients [14]. To show the originality and interest of this organization for our purpose, we need rst to say a few words about the different types of patient organizations. In our work, we have found that one of the main issues for patient organizations rests with the nature of their relations with specialists, be they medical professionals or scientic researchers. Different organizations have found a variety of answers to this issue, which we have termed auxiliary organizations, opponent organizations, and partner organizations[15,16]. Auxiliary organizations base their action on the recognition of a difference between expert know-how and lay experience. Some encourage cooperation between professionals and patients, the latter becoming auxiliaries of the medico-social milieu as they take care of technical interventions dened by the experts (injections, physiotherapy, dialysis, etc.). They also provide moral and social support. Others, more suspicious of the medical world, try to acquire expertise comparable to that of specialists in their disease. In both cases, although with different strategies, they participate in the recognition and maintenance of this divide [17]. In the case of opponent organizations, patients reject any dening of their state by the scientic and medical community. From their point of view, their very identity as patients is at stake. One of the most extensively studied examples is the case of deaf people who refuse to use cochlear implants. They value their identity and reject a technology that would deny it [18]. The third type of organization, the partner organization, tries to establish parity between specialists and patients. This type of association helps to highlight the subtle links of cooperation between patients and specialists on the one hand, and mechanisms that construct social identities on the other. AFM provides a clear example of what we call a partner organization. Established in the late 1950s, it brings together people with muscular dystrophy and their families [19]. There are numerous forms of this disease, but the common denominator is the fact that in all cases the neuromuscular transmission between peripheral nerve and

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muscle is affected. Some forms are extremely serious and can be fatal, others less so because they affect non-vital muscles. Some affect adults, others children. Some are found in women and others exclusively in men. Finally, while some are monogenetic others are plurigenetic. This diversity provides abundant material for particularly interesting comparative analyses. The AFM is an especially interesting case because when it was founded the medical and scientic world showed no interest whatsoever in this disease. Moreover, the most serious cases were seen as defects that the families tried to hide. Thus from the beginning the AFM decided to pursue two courses of action: one oriented toward the development of research, the other toward daily support for patients and better social integration. The AFM and its history are therefore particularly suitable for exploring certain mechanisms at work in this co-production of scientic knowledge and social identities. We will begin by comparing laboratory research and research in the wild, emphasizing patient capacity to maintain control over this cooperation. Then we delve into the entangled constructions of patient identities and the collective research in which they participate. Finally, we consider the role of genes as they are integrated into the construction of the collective, but also in the production of mechanisms of exclusion, which is the reverse side of the constitution of this collective.

3. A new form of collaborative research: researcher in the wild When considering the nature of the relations between professional scientists and lay people, two pitfalls must be avoided. The rst would be simply to postulate the ignorance of lay peopleignorance that can be overcome only through education or popularization. By contrast, the second pitfall would be to afrm the superiority of lay expertise in the name of its greater realism. On the one hand, it is claimed that objective and universal scientic knowledge is necessarily produced in laboratories within the community of specialists; on the other, it is asserted that truth and effectiveness are local and contextual. As Harry Collins put it in a recent review, it is a mistake to jump from a critique of Western science to arguing for the abolition of the notion of expertise [20]. We would add that it is also a mistake to deny the existence of lay knowledge. The AFM experience takes us even further in the adoption of a symmetrical point of view. It shows, rst, that these types of knowledge are not contradictory but complementary, for when science is applied without taking local knowledge into account, it is often the poorer for it, and vice versa [20, p. 290]. We can therefore talk of mutual enrichment, but obviously not of competition or substitution. Second, it demonstrates that these two forms of knowledge are not intrinsically different. It would, for example, be wrong to say that the former are explicit and codied while the latter are tacit, or that the former are formalized while the latter are informal. Everything depends on the equipment used on both sides and, more broadly, the conditions in which the expertise is produced. This explains why some collaborative research is possible.

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The AFM case enables us to be more specic on this point. Throughout its history, patients and their spokespersons have imagined and stubbornly developed what could be called research in the wild, while continuing to strongly support laboratory research. Neither of these is more important than the other; for the patients, both research in the wild and laboratory research are necessary and complementary. Because their diseases are orphans, patients have from the outset had to deal with being abandoned by the medical and scientic profession. Consequently the AFM promoted a series of actions to gather information on the diseases, that is, to undertake what could rightly be called a primitive accumulation of knowledge. In this perspective, one of the most original contributions of the AFM is the mobilization of proto-instruments by patients and their families who put themselves in a position to create formal, transportable, cumulative, and debatable knowledge. These protoinstruments include cameras, camcorders for taking lms and photos, accounts written by patients or their parents in the form of books for the general public, requested testimonies, spontaneous letters, and lectures given by patients or their relatives. All these widely and easily available proto-instruments are means for formalizing and publicizing knowledge, which was formerly conned to the intimacy of private life. Photos are an effective tool for producing knowledge on the intermediate form of spinal muscular atrophy (SMA) in children. Dened in a residual way as being neither fatal in the short term nor non-progressive in the long term, its degree of gravity can be qualied only by comparison, with each parent trying to situate his or her childs development in relation to that of other children suffering from the same disease. Photos play a special role in this comparative evaluation because they act as tools for visualization, which make it possible to compare childrens abilities to act. The patients and their parents are never without their photo albums, which they exchange and comment on at every opportunity, often trying to interpret the other parents (sometimes) silent reactions. These discussions and evaluations are comparable to those of researchers around the inscriptions produced by their laboratory instruments [21]. What is important is the qualication of the childs state and his or her trajectory. Apart from lms, photo albums, and accounts, patients also use more classical methods such as surveys. These consist of long questionnaires (generally about ten pages with over 50 highly detailed items) that are sent out regularly. Their formulation and the processing of the answers serve to review the disease, including its development, symptoms, treatment, and the effects of treatment. They play an important part in building up and sharing patient knowledge and know-how. Drafting these questionnaires involves discussions on information to be gathered and the way it will be used and possibly transmitted to specialists in the form of syntheses or questions. Reviews comparable to manuals are written, sometimes including data from established laboratories. This research in the wild is an organized, instrumentalized, and reexive research. Much more could be said, but these comments are sufcient to show that, at least in this case, there is no fundamental difference of status between knowledge produced by patients and that produced by researchers or clinicians. On both sides we

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nd experiments, instruments, and procedures of visualization, formalization, evaluation, accumulation, and writing. But researchers in the wild go further. They do not want to remain isolated. They launch funding programs aimed at developing laboratory research. They ght to establish structures for exchange between researchers, clinicians, and patients. For example, patients suffering from MD are not merely content to produce useful and original knowledge of their own disease. From the start they have tried to establish contacts with specialists in order to work with them on an equal footing. The symmetry and complementarity between research in the wild and laboratory research is promoted and maintained. The resulting cooperation, while not free of conict, has taken diverse forms: organization of sampling in close collaboration with clinicians ne thon (which and biologists; constitution of cell and DNA banks; creation of the Ge is controlled by the AFM), a very innovative technical platform primarily responsible for drawing up relevant maps of the human genome. (On the role and importance of technical platforms in biomedicine, see Keating and Cambrosio [22,23].) Apart from this research infrastructure managed jointly by the association and the scientists concerned, the AFM funds numerous research teams. All of these represent opportunities for those running the organization to monitor the evolution of laboratory research and to promote certain research topics rather than others. The number of mixed working groups that take stock of particular diseases, raises questions, and exchange expertise gives a fair idea of the importance and complexity of the system that has progressively been established. The system has undoubtedly enhanced interaction between research in the wild and laboratory research. Specialists and patients meet not only for pleasant discussions or mere information sessions, they also engage in new forms of collaborative research. Translations and cross-fertilization between the different forms of knowledge take place. It is their content and implications that we turn to now.

4. From collaborative research to new collective identities It is not enough to talk of the hybridization of knowledge or information exchange. Collaboration between patients, clinicians, and researchersbetween specialists in the eld and laboratory specialistsis organized around three issues: (a) constructing the identity of the actors involved; (b) setting up strategic space; and (c) developing new hybrid collectives [24]. The rst component is that of identity. Expertise in the wild and laboratory expertise are constantly shifting. Through collaboration and exchanges arranged by organizations such as the AFM, the aim is to improve knowledge of the disease and its different forms. But the picture is becoming increasingly complex, because as the description of originating or genetic mechanisms becomes more precise, so do the symptoms and clinical diagnoses. Patients enhance and clarify the characterization of their disease. They know more about its possible evolution and learn to link individual behavior or social relations to biological data in a constantly revisable way. This discourse combines the biological and the social to produce what Paul

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Rabinow has suggested calling bio-sociality [25]. The patients identity and that of the group of patients, of which he or she becomes a member, are simultaneously shaped. Symmetrically, specialists who engage in this collaboration are forced to consider the disease from the bench to the patients bed, to borrow a phrase from [26]. This manifests itself in new professional identities and careers: some specialists circulate back and forth between clinics and laboratories, or between previously separate elds such as genetics and psychiatry. The second component is a strategic one. The more knowledge about the originating or genetic mechanisms of the disease advances, the more complex the picture becomes. The number of actants involved (all kinds of proteins, antibodies, enzymes, etc.) multiplies and causal links proliferate. As a result, differences between individual patients intensify, and the number of specialists that can be mobilized increases. This opens the way for strategic options. One researcher will accompany the discovery of a gene by creating an animal model and then testing gene therapy; a second will continue the gene hunt by studying other diseases; a third will concentrate on proteins and their functions; and so on. Each choice can be part of a different set of alliances. For example, a clinician, on behalf of the immediate interests of a specic patient, might refuse to launch a costly project to study the function of a protein, arguing that the patient should not have to wait for treatment until it is discovered what molecules trigger the production of certain proteins. By contrast, a biologist, also on behalf of the long-term interests of MD patients in general, might take the opposite stance. Conversely, given the uninterrupted development of research investigations, the disease constantly shifts between different medical repertoires. As a consequence, for each patient the range of possible therapeutic options become broader and more diversied. Genetics simplies nothing; it carries with it more and more complexity, more and different alliances and trajectories. Reductionism is the infantile disorder of genetics. (Feminists have coined the term strategic essentialism to designate this new form of identity struggle.) The third component is investigation. When clinicians or researchers engage in conversation and interaction with patients, they have to be extremely careful. They must recognize the diversity of situations, the complexity of possible causal links. They must be aware of the importance of what they call the social context. They must perceive the professional repercussions of the disease and must realize that patients living with many prostheses depend heavily on those around them and on the way they are cared for [27]. Thus, in the researchers or clinicians eyes, patients become personalized while gaining depth and complexity. They are constituted as individuals caught up in a peculiar network of social relations. Patients, in turn, witness the appearance and proliferation of more and more nonhuman entities that they learn to think of as being part of themselves. They see the creation of links between themselves and, for example, an obscure worm whose genome serves as a model and about which they regularly ask the researcher for news. They see a host of specialists come to study their diseasespecialists in population genetics, genetic counseling, heart diseases, and so on. Their own understanding of the disease is thus enriched with an array of new human and non-human

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entities that they learn to describe and with which they become accustomed to sharing their existence. The collaboration that builds up between researchers in the wild and laboratory specialists allows this exploration and joint construction of the hybrid collective. As Rabinow puts it, one could say that these constantly recongured collectives share genes and proteins. They also have medical specialists, laboratories, narratives, traditions, and a heavy panoply of pastoral keepers to help them experience, share, intervene and understand their fate [25].

5. An outcome: genes as operators of entanglement and exclusion What has been said so far demonstrates the centrality of genetics and genes, now the pivotal aspect of MD research. It is the gene that today makes possible this conguration in which laboratory expertise and expertise in the wild enrich and fertilize one another. It is also the gene that allows the construction of discourse, which simultaneously controls identities, strategic alliances, and exploration of the collective. It is therefore the gene that, in its own way, produces interdependency, which weaves the social link. Two examples illustrate this point. In the rst, the AFM was confronted early on with a problem of legitimacy and equity. The funds that enabled it to nance research and support patients were almost le thon, an extremely successful TV fundraising activity. entirely derived from the Te In France this program (considerably different from its American counterpart) has become a huge, popular, festive event, a manifestation of national solidarity. With this success, the risk is that the AFM could be accused of collecting substantial amounts of money (in 2000 it raised approximately 500 million francs) for a small group of patients who, although severely ill, are a tiny minority. The AFM anticipated such criticism, however, by launching a mapping program that was not exclusively focused on muscular dystrophy and made certain equipment available to teams working on other diseases. The AFM thus carried out what Boltanski and e en ge ne ralite linking specic concerns and positions Thevenot have called a monte to collective issues [28]. By nancing the AFM, French television viewers thus support work that benets not only MD but also other more common diseases that affect or could affect large numbers of people. This impressive translation between individual and general interests is made possible by the genes themselves, which constitute a powerful operator of translation [29]. Everything that advances the identication of genes and the analysis of their functioning is protable for all the potential patients that we are (on the subject of biomedicine as a new disciplinary arrangement that dismisses the traditional opposition between normality and pathology, see Keating and Cambrosio [23].) But the action of the gene goes further than this. By showing that a defect is in fact a small genetic accident, the AFM demonstrates that we are all just one or two genes away from being MD patients. Genes are not content just to make particular and general interests compatible; they also produce solidarity and compassion. When circulating through various spheres (scientic, political, medical, and economic), they

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no longer divide; they connect, create interdependency, and produce a common humanity that includes those who tended to be excluded. In a second example, the work of collective integration is also performed by the gene on a smaller scale. Cooperation between research in the wild and laboratory research creates a sort of trading zone [30], an area for the circulation of genes which, in different forms, go from the patient to the cell bank and from there to the laboratory where they are analyzed. This circulating gene entangles patients and researchers as it goes along. As a young girl with spinal muscular atrophy said to a biologist who, after having helped to identify the gene of the disease, was working on the protein: Im with you in your laboratory since youre working on my genes. Or, as another researcher admitted: Ive always got a sample le open, and I know I can go back to the patient whenever I want to. If we add the pedigrees that, on the space of a sheet of paper, conate different times and places, draw links, visualize gene trajectories, and perform families, we get a rich web of entanglement. In both cases we see that the gene is domesticated, tamed, and integrated into a collective that holds it and is held by it. It is a civilized and civilizing gene, performing the collective and performed by it. And this integration into the society of the gene, or insertion into the genetics of society, would have been impossible without a starting point: the parity, the symmetry, between the complementary forms of knowledge that constitutes the foundations of this collective. The creation of this collective, which is a perfect illustration of the biosociality described by Rabinow, is not free of exclusion, a point that must also be recognized. Genes, as presented by the AFM, are operators of entanglement and hence of solidarity. To understand the moral and political consequences of this action of genes, Franc ois Julliens work offers a unique source of inspiration [31]. He compares the ways in which moral behaviors are accounted for in Western and Chinese philosophy and shows how Mencius work offers an interesting alternative to the multiple solutions conceived of in the West. Being human, says Mencius, means being entangledif I can be affected and moved by other beings it is because I am entangled, involved with them. The modalities of this entanglement are multiple. The importance of Merleau-Pontys last writings [32] likewise lies precisely in his analysis of the body not as a being in the world (he highlights the limits of this classic phenomenological position), but as articulation, entanglementif I am moved it is because I am caught in a web of links of which my body is one of the most powerful operators. We can see the importance of the circulating gene and its visualization. Genes (and we are not talking about those of eugenicists but the civilizing genes of the AFM) produce these entanglements and make them visible. They create links and are therefore a source of moral questioning. Once the gene has been received in the collective, a whole series of actions and behaviors become inevitable for whoever does not want to be excluded from it. One example would be making a diagnosis. Another is entering into the public space of disease, into the collective described by Rabinow, which, apart from genes, includes medical specialists, the family, laboratories, narratives. One must also decide whether or not to follow the treatment recommended by the patient organization and specialists, and whether or not to adopt the available prostheses.

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As we have shown elsewhere, this collective imposes certain forms of agency. In general an individual who takes care of him or herself struggles against the disease and agrees to enter into this unusual collective [27]. We have begun to identify and study all those who refuse to be included in the collective. Clearly, they are not just ghting against genetic reductionism or a form of medicalization that they consider excessive. Here again Mencius is highly valuable. These recalcitrant patients opt for other collectives where genes are absent, but which leave open other forms of entanglement and humanity, other agencies. This refusal is reected in the rejection of knowledge produced by collaborative research. Basically, these outsiders do not want to hear what other patients or specialists are saying to them. They do everything they can not to understand genetics and the strange solidarity it suggests. This does not mean they are mentally retarded or amoral. They are simply opting for another kind of humanity, other forms of knowledge, solidarity, and morality [33].

6. Concluding remarks Laboratory knowledge cannot absorb all the complexities of the world. This point has often been made [34]. Consequently, given the framing required by the laboratory, some externalities will always exist, a point Callon [35] made previously with regard to economic calculations but which applies equally to science. For example, as we argue here, professional scientists do not on their own readily take into account demands and problems raised by orphan groups, in this case patients suffering from MD. Faced with this failure of laboratory research, two strategies are open to patients. Either they endorse exclusion and turn it back against a science considered to be distant, normalizing, and reductive, or they decide to develop their own capacities and to set up collaborative research with scientists and clinicians. Reasons for choosing one option over the other are contingent. In the case of sickle cell anemia suffered by African-Americans, for example, Fullwiley [36] has shown that in order to avoid increases in stigmatization, they choose to exclude themselves and not to collaborate with research. In the case of muscular dystrophy, however, this risk of stigmatization did not exist. Patients simply wanted to move out of the shadows. They did so by actively participating in establishing collectives that include genes but also a whole series of prosthesis. Yet this political choice, based on a certain organization in the production of knowledge has, in turn, produced its own exclusion. To understand this never-ending movement in the reconguration of identities, inclusion and exclusion, we have to accept the symmetry between expertise in the wild and laboratory expertise. One nal point: beyond the similarities between research in the wild and conned research delegated to professionals (both cases involve genuine research), some differences remain. Research in the wild has several remarkable properties: 1. Researchers in the wild are directly concerned with the knowledge they produce because they are both the objects and the subjects of their research.

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2. Production and appropriation overlap to a large extent, since it is one group that in the same movement elaborates and uses the knowledge. 3. Incentives are of a different nature, for what is at issue in the case of research in the wild is fate and the survival of the group whose members wish to save their lives. 4. Largely as a consequence of the preceding points, we cannot separate the elaboration of knowledge from the construction of an identity because this identity is also common and shared before being individual. 5. Research in the wild makes a strong contribution to the formulation of problems and questions that become intelligible for conned researchers, some of whom have participated in their elaboration. The concerned groups, owing to their investment in research, are no longer the only ones concerned. By contributing to a better understanding of these new and complicated collective dynamics, science studies will enrich debate on, and the performance of, these collectives.

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Michel Callon was educated as an engineer and sociologist, and is now a professor of sociology at the Ecole des Mines, Paris. He also served as director of the Centre de Sociologie de lInnovation from 1982 to 1994. He was president of the Society for the Social Studies of Science from 19981999. His books in English include Mapping the Dynamics of Science and Technology: Sociology of Science in the Real World (1986), edited with John Law and Arie Rip, and The Laws of Markets (1998). Vololona Rabeharisoa, a colleague also at the Ecole des Mines, has collaborated with Callon on a number of research projects, especially in the elds of medical science and technology.