Callon 2009

The Growing Engagement

of Emergent Concerned

Groups in Political and

Economic Life

Lessons from the French Association of

Neuromuscular Disease Patients

Michel Callon

Vololona Rabeharisoa

Ecole des Mines de Paris

This article discusses the notion of emergent concerned groups and explores

how these groups contribute to shaping the relations between techno science,

politics, and economic markets. The first part presents the case of the French

Association of patients suffering from muscular dystrophies. This history

suggests that under certain conditions, emergent concerned groups are able

to impose a new form of articulation between scientific research and political

identities by directly linking the issues of research content and results to

that of their place in the collective. The second part argues that the evolution

of economic markets, combined with that of science and technology, leads to

a multiplication of those emergent concerned groups. The study of the conditions

under which these emergent groups become legitimate stakeholders

as well as the analysis of their impact on market organization and technoscientific

institutions are key research topics for the near future.

Keywords: patient organizations; emergent concerned groups; economic

markets; social movements

Current questioning of the modes of governance of science (at least in

Western countries) frequently highlights the limits of the delegation of

authority from the political to the scientific system (Guston 2000; Callon,

Science, Technology, &

Human Values

Volume 33 Number 2

March 2008 230-261

© 2008 Sage Publications

10.1177/0162243907311264

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230

Authors’ Note: Please address correspondence to Michel Callon, Centre de Sociologie de

l’Innovation, Ecole des Mines de Paris, 60 Boulevard Saint-Michel, Paris 75006, France;

e-mail: michel.callon@ensmp.fr.

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Lascoumes, and Barthe 2001; Jasanoff 2003). This delegation has not

prevented researchers from being mobilized by large military programs, nor

has it excluded them from participation in the innovation activities of industrial

firms (Pestre 2003). What it has produced, however, which analysts

have highlighted, is the exclusion of civil society that has only rarely been

invited to take part in debate and decisions about the orientations of the

technosciences and even less so in the process of knowledge production.

The notion of civil society may be useful for underscoring the limitations

imposed by the prevailing institutional configurations, but it tends to be

misleading in its assumption of a double divide, what Callon, Lascoumes,

and Barthe (2001) have called a double delegation, between experts and lay

people and between ordinary citizens and quasi-professional decision makers.

It is furthermore meaningless for analyzing and understanding situations in

which actors try to blur the distinction between the public and private

spheres. There are probably several ways of avoiding being trapped in these

dichotomies. The aim of this article is to explore one such possibility. We would

like to show how the notion of emergent groups who are concerned by the

development and effects of the technosciences could shed light on the

establishment of a new type of relationship between science, politics, and

economic markets.

In the first part we briefly present the history of a French association of

patients with muscular dystrophy (MD), the Association française contre

les myopathies (AFM). This history serves to illustrate what we mean by

emergent concerned groups. It shows how patients were able to construct

their individual and collective identities owing to the association’s intense

engagement in scientific and technological research activities—an engagement

that enabled them to change their ontological status. Considered for a very

long time as freaks of nature, MD patients became human beings in their

own right. Their disabilities and problems are now explained in terms of

genetic faults that research has made it possible to characterize. It is the

recognition of this new identity, constructed around genes and prostheses,

that the association has fought for in the public sphere through intense

political mobilization. The AFM’s history suggests that under certain conditions,

emergent concerned groups are able to impose a new form of articulation

between scientific research and political debate by directly linking

the issues of research content and results to their role in the collective.

Is the AFM an exception? Or is it an extreme and therefore striking

example of a wider phenomenon? To answer this general question we need

to start by asking how such emergent groups appear. The second part considers

the proliferation of emergent concerned groups from the point of

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view of the mechanisms explaining their appearance. We argue that the

evolution of economic markets, combined with that of science and technology,

creates conditions for a multiplication of the emergent groups concerned.

These may be orphan groups that like the AFM strive to have their problems

taken into consideration, or they may be groups affected by unexpected

overflowing, the nature and effects of which they want to understand.

Whether orphaned or affected, these groups are characterized by the fact

that they are concerned by technoscientific development and applications.

Like the AFM they might be incited to undertake investigations and research,

both to clarify the problems they face and to explore possible solutions.

In the conclusion we suggest that it is interesting to study these groups

and the course they follow because they could tend to induce the reorganization

of double delegation and economic activities.

Emergent Concerned Groups: The Case of the

French Association of MD Patients

In this section we use the case of the French association of MD patients

to introduce the notion of an emergent concerned group. The formation of

social groups and their reproduction are key questions for sociology.

Available answers are nevertheless unsuited to the cases of interest to us

here. Generally, they assume that the identity of the group is based on values,

projects, practices, interests, or habitus shared by its potential members.

This type of approach does not apply to emergent concerned groups, whose

identity is an achievement rather than a starting point, a primum movens.

Moreover, the construction of this identity is the outcome of real research

in which the groups are heavily engaged and that leads to the production of

entities (in this case of genes and various sociotechnical prosthetic devices)

that participate in shaping their identity. The AFM’s history, briefly outlined

here, shows how this transformation takes place and causes the concerned

group to articulate science and politics in an original way.

From (Passive) Exclusion to (Active) Inclusion

The AFM plays an original and important part in French society, in both

the medical and scientific fields as well as the political and economic spheres

(Rabeharisoa 2006). Through its annual television program Le Téléthon,1 the

organization collects increasingly large sums of money: €100 million in

2004 and a total of €700 million since its inception in 1987.

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A substantial proportion of this money (about 70 percent) is used to support

biological and clinical research. This has enabled the AFM to play a key

part in genetic and genomic research (for a detailed analysis of the organization’s

history, see Rabeharisoa and Callon 1999). The contribution of the

Généthon, a technology platform decided on and financed by the AFM, has

been crucial in the human genome sequencing project. The organization has

also supported the creation and development of teams that have been highly

successful on the international scene, and not only in the field of neuromuscular

diseases. Compared to public research organizations that tend to

shy away from new research areas, at least in France, it has proved to be

highly flexible, as, for instance, in its decision to move into the field of

genotherapies (Givernaud and Picard 2001). One study shows that the association

has had a significant impact on Centre National de la recherche scientifique

(CNRS) research orientations in the life sciences (Kahane 2000). The AFM has

furthermore demonstrated the extent of its influence through its instrumental

role in the government’s decision to launch a national program for the creation

of Genopoles, and it has contributed directly toward the creation of the first

of these Genopoles in Evry by donating facilities and equipment from the

Généthon (Tambourin 2005). In the scientific and medical spheres, its intervention

has encompassed more than genetics. It has also supported clinical

research and built up an entire network of consultations devoted to MD

patients. Through its technical publications for both professionals and the

general public, and through the Téléthon, it has contributed toward the diffusion

and popularization of genetic knowledge. It has also been directly

active in the economic sector by supporting start-ups and entering into partnerships

with industry. From the outset its frame of reference was international:

in all cases, whenever it was unable to find scientific or economic

partners in France, it looked for them abroad. Finally, the AFM has played

a less visible but equally crucial part in the area of disabilities (Winance

2001). For instance, it contributed to the conception and implementation of

a new form of assistance for disabled persons. It has been, and still is, at the

center of political demands for the right to compensation (on all these

subjects, see Callon 2006.)

This scientific and political activism has generated a great deal of hostility

and countless accusations. Public research bodies have viewed the AFM’s

growing influence with some anxiety and have repeatedly accused it of

using its (additional) money to impose its own interests and priorities on

scientists whose salaries are paid by tax payers. Some cabinet ministers have

even tried to impose their regulatory authority on the organization, claiming

that the funds collected could be considered as “public” money and that the

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State therefore has to control its use (Barataud 1992). Scientists whose

research options and advice were refused at some point by the AFM have

mounted press campaigns to denounce its choices. In the early 1990s they

criticized the risky technological investments of the Généthon and later the

concentration of funds on genotherapies. For a long time intellectuals were

indignant about the show put on for the Téléthon, with its display of suffering

intended solely, they claimed, “to make grannies cry so that they’ll

donate money.” Gradually, their criticism abated in the public sphere, but

critics are still set to pounce at the slightest opportunity. The AFM has been

undeterred by this criticism and jealousy. In 2004 Bernard Barataud, the

organization’s charismatic leader who engaged it in this exceptional adventure,

was awarded the annual University of California, San Diego (UCSD)

and Nature Medicine prize for “people or institutions that have made a

noteworthy contribution to the development of molecular biology for therapeutic

treatment of human diseases” (November 2007). In the same year

he also received the Ile-de-France Entrepreneur of the Year award as well

as the national Enterprising Spirit award by Ernst & Young and the magazine

Enterprise.

The AFM’s success, reflected in the organization’s active and influential

presence in the scientific, political, economic, and media spheres, is even

more impressive in light of its humble beginnings (Barral et al. 1991). The

organization was created in the late 1950s by a few families with children

diagnosed with MD. At the time, people with severe MD were hardly considered

as human beings. Testimonies abound (Barataud 1992; Kepper

1988) showing how they were described as monsters or “errors of nature.”

It was almost impossible to consider the affected individual as a person who

could be separated from the disease from which she or he was suffering. In the

absence of professional communities structured around this pathology, being

an MD patient was a state and meant exclusion from society and culture

(Callon 2006). Only a handful of professionals were interested in these

diseases. There was no cure, no care, no research, no constituted facts, and

no causal relationships on which to draw to find solutions—only matters of

concern and questions. It was to fight against this exclusion and indifference

that in 1958 some parents decided to create the AFM.

The changes in the past few decades have been striking. In 1950 MD

patients were excluded from common humanity; thirty years later they were

considered as human beings in their own right. They had crossed the border,

back into the realm of human beings, where they were simply singularized

by a few genetic particularities. In the late 1950s they were undifferentiated

MD patients; since the 1980s they have been unfortunate human beings

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affected by a particular disease, generally monogenetic, which explains why

their bodies are so dramatically crippled and why they die earlier than other

people. Uncertainties remain, especially on the possibility of preventing

diseases and of finding therapies quickly. But many facts have been produced

that make it possible to define options and to elaborate strategies. Professional

networks—researchers, doctors, occupational therapists, and care officers—

have been established, and patients with their families have formed groups

to work together. Neuromuscular diseases are finally on the list of those

covered by Social Security. People suffering from them have gone from a

situation of passive exclusion to one of active inclusion.2

The association’s history is a clear illustration of what we call an emergent

concerned group and of one of the trajectories that such a group is likely to

follow. In 1950 the population of MD patients was fragmented and could

hardly be considered as anything more than a juxtaposition of individuals and

their relatives. Their status (quasi-nonhuman beings and, what is more,

children) reduced to virtually nothing, they lacked the ability to define an

identity and to perceive and defend their own particular interests. The

families themselves were unsure, wavering between abandonment (doctors

told mothers not to become too attached to their children because they were

doomed to die), guilt (“we’re responsible for this mistake”), and revolt

(“we’ve got to do something to save them”). The only things that federated

these beings (relatives, parents, and sick children) were the shared concerns,

worries, and problems that they could connect to the name of a disease provided

by the medical profession for nearly a century but that seemed to be a

death sentence, with no constituted knowledge and no research effort offering

some hope of a solution or some way out of ignorance. Referring to a concerned

group means underscoring the fact that beings feel bound by the

matters of concern that they share and express with words common to them

all, words that have meaning. Qualifying these groups as emergent means

indicating that nothing is stabilized: identities are problematic and, in this

case, in the most radical way possible (are they really human beings?). The

interests to defend are inchoate, changing, and, above all, defined by third

parties (parents and friends). Identity and interests are the outcomes, and not

the causes, of the action itself (Callon and Law 1982).

Particularly interesting, in the AFM case, is the fact that a few decades

later the situation has become much clearer and the uncertainties have

lifted, at least partially. Expectations, interests, and projects have been

formed and then stabilized, constituted, and entrenched in networks and

communities where they belong and are recognized. The worries have not

disappeared; these groups are still concerned, but in the meantime identities

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have been shaped, asserted, and recognized; a form of acknowledgement

has been obtained; and causal relations explaining their situation have been

demonstrated, thus paving the way for strategic actions. It is this dramatic

transformation that we would like to explain.3

To understand how this group created its own identity, we need to focus

our analysis on patients’ and their families’ engagement in the research

undertaking that was to spawn new entities: the genes responsible for the

disease. These genes allowed the construction of a particular identity and

provided the patients and their families with the resources and arguments

needed to defend that identity in the public sphere. The dynamics of emergent

concerned groups and the actions that they undertake are unintelligible

without the nonhumans that their investigations bring to light.

The Two Paths and Their Articulation

How was an emergent group, consisting of individuals concerned by their

own death and suffering or those of their children, able to construct a collective

identity, be recognized, and transform their position of exclusion into one

of inclusion? This shift was clearly more than a simple move: “our children

were excluded; now they are included.” It was necessary for both the patients

and their social environment to change. In short, we would say that it was

possible owing to a dual movement or, rather, a dual detour, the first via

research and the second, closely linked to the first, via political advocacy.

We claim that in order to understand how emergent concerned groups

are sometimes capable of constructing stabilized identities, goals, interests,

or preferences, it is necessary to examine all the investigations, inquiries,

and research studies that these groups undertake to find solutions to the

problems they face. From this point of view the AFM is an exemplary case,

for it expressed its strategy in these terms very early on (probably due to the

radical nature of the matter of concern: becoming full-fledged human

beings). To describe this strategy it referred, from a very early stage in its

history, to two paths to explore: the path to cure and the path to citizenship

(two phrases coined by the AFM). The former led the organization to focus

on genes, proteins, stem cells, and so on; the latter prompted it to fight for the

recognition of all handicapped people’s rights and to propose appropriate

compensatory sociotechnical prosthetic devices. These two paths constantly

intersected, and the question of their priority in relation to each other was

repeatedly debated within the organization. They helped to construct a

genetic identity that was gradually transformed into a genetic citizenship

(Heath, Rapp, and Tausig 2004; Rose and Novas 2005).

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It is this twofold exploration that we will now consider, focusing essentially

on the huge investments that had to be made, for stabilizing an identity and

having it recognized required the mobilization of many actants.

The path to cure: genetic identity. What is striking in the AFM’s history

is the intensity and variety of the modalities of engagement in biological

and clinical research. Basically, these engagements have taken three forms,

the relative importance of which has varied with time although they have

always been present in one way or another.

From the outset, the organization was engaged in a process of problematization

(Dewey 1916; Callon 1980a; Foucault 1994; Rabinow 2004; Miller

and Rose 2008). For the families involved, the aim was to clarify matters of

concern and to make them more explicit, that is, to identify problems and

then to formulate questions that would be attractive to the few specialists

likely to take an interest in the subject. This problematization entailed a primitive

accumulation of knowledge that was to last throughout the 1960s and

’70s. In this process information was gathered about the different ways in

which the diseases evolved and about the treatments, diets, physiotherapy,

and prosthetic material that seemed to have beneficial effects. Very soon it

enabled the AFM to disprove certain assertions by specialists, essentially on

patients’ life expectancy and the evolution of their disease. Subject/objects,

which until then were treated as invisible and unobservable, were subjected

to observation and scientific scrutiny. Proto-instruments (that produced

inscriptions) were used: films and photos taken by the families were shown

and discussed; working groups were formed; inquiries were launched;

white papers were drafted, circulated, commented on, and revised; and so on.

The group became a producer of information and knowledge. The term

“researchers in the wild” is certainly apt since there were no confined laboratories

on which they could rely (Callon 2003).

This work of intense problematization at the beginning of the association’s

life was never interrupted because the diseases and the patients’ living conditions

(and especially the lengthening of their life expectancy) constantly

raised new questions and posed new problems.

Once the first cooperation had been launched with researchers and doctors,

the AFM did not withdraw from research as such. In this respect it

diverged from the standard model in which laypersons alert researchers to a

problem and then leave the monopoly of knowledge production to them. Nor

did it deprive specialists of the right and ability to fulfill their role and make

their contribution. In a pragmatic way, and before the notion had been conceived

of to describe new modes of organization of research and innovation,

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it contributed to the formation of a community of knowledge or what we

prefer calling hybrid research collectives. These collectives consisted of

researchers from different disciplines, practitioners, technologists, medical

professionals, parents, and patients. But their description cannot be limited to

such a list. To understand the functioning, dynamics, and modes of coordination

of these collectives, it is necessary to take into account the active role of all

the material, nonhuman entities that are part of them (see Amin and

Cohendet [2004] for a successful combination of actor–network theory

[ANT], distributed action, and a cognitive approach). With the development

of the AFM, the growth of its financial resources, the multiplication of

research agendas, and the survival of patients, these collectives (that the

organization called interest groups) proliferated in various forms. Some

were collectives constituted around a particular disease, for example, MD

of Duchenne, spinal muscular atrophy, or myasthenia. Others were formed

around an organ such as the heart, which is a muscle of a particular nature

that may be affected when patients live longer. This required many observations,

experiments, and interpretations to be developed and evaluated,

especially by joint task forces. In the clinical domain, groups were formed,

for example, around the tracheotomy or arthrodesis. The social sciences were

included as well: groups bringing together psychosociologists, psychiatrists,

and sick persons were constituted on subjects that are traditionally treated

by patient organizations, such as accompaniment toward death, bioethical

issues, and prolongation of life by medical means. On all these subjects the

contributions by the patients and their families were highly innovative. For

example, this collaboration between patients and specialists proved to be

productive on “new” issues such as the organization of periods of respite,

enabling families and patients not to be constantly dependent on each other.

These research collectives have varying life spans. In them the specific

role of patients ranges from mere auxiliaries to researchers in their own

right who even sign scientific publications in academic journals. In some

cases patients act as intermediaries between disjoint specialties that were

previously unaware of the others’ work. They compile information, translate

articles, and write on the states of the art. In short, depending on the

circumstances, the diseases, and their own education, they may become

involved in any research-related occupation, from the laboratory bench to

the dissemination of information, clinical observation, or the adaptations of

therapies or prostheses. What counts here is their involvement in collectives

that without them would not function in the same way or produce exactly

the same knowledge, simply because they would focus on problems formulated

differently.

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Callon, Rabeharisoa / Emergent Concerned Groups 239

The association has also played a key part in the orientation of research,

that is, in the definition of a research and innovation policy in the full sense

of the term. This is remarkable since France is one of the Western countries

in which the delegation model was taken to its extreme. From the outset the

AFM rejected this model. The governing board, composed exclusively of

patients or their parents, constantly maintained its decision-making powers.

It granted researchers the autonomy they needed, recognizing the value of

their propositions, but kept a firm hand on the reins. This strategy was

reflected, in particular, in dramatic decisions that turned a part of the scientific

community against the AFM, such as the association’s decision to

build the Généthon and, more recently, to launch out into genotherapies,

thus discontinuing its support for teams working higher upstream that were

accustomed to receiving its financial backing.

This type of political prowess is rooted in a remarkable understanding of

the rules by which the scientific community functions (in several of his

writings, Bernard Barataud [1992] has proposed sharp analyses of the

research community and especially of the mechanisms of replication of

results). It has also been expressed and reflected, above all, in the creation

of governance structures and procedures of financing and support that were

cruelly lacking in the French government and public research bodies. This

level of reflection and strategic orientation requires that certain patients be

capable of entering into the black box of knowledge. It was this strategic

competence that prompted the organization to decide, against the advice of

influential scientists, to build the research facilities that have enabled it to

pursue and to control research activities and the choice of research thrusts.

The AFM also formulated a very precise doctrine on its own position in the

French scientific community, defining its role in relation to those of public

research bodies and firms and proposing original ideas on the boundary

between public and private, general interest and particular interest.

This strategic work has been performed essentially by people without

any specific university training, who sought no advice from experts in the

social sciences or strategic management. In a merit-based country such as

France, this mixture of respect and lack thereof is something exceptional and

almost jubilatory: neither scientism nor antiscientism, just an immoderate

passion for research and a keen awareness of the fact that choices have to

be made and that those choices cannot be left up to scientists alone.

The AFM, by triggering the creation of research collectives, contributing

to their development, participating in their activities, and ranking their priorities,

did not limit itself exclusively to scientific or technical investigation. It

embarked on another adventure: the construction and the defense of new

identities. This is the point that we now wish to consider briefly.

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240 Science, Technology, & Human Values

The path to citizenship. The progressive construction of patients’ identity

has been directly associated with the organization’s engagement in

genetic and clinical research. Owing to this engagement, patients are

“socialized”; they become stakeholders in scientific, clinical, medical, and

social networks. As in classical ANT case studies, this socialization, which

takes them from a situation of exclusion to one of inclusion, is mainly

effected by nonhumans. They are the ones that by circulating and linking

heterogeneous entities produce and determine the shape of networks of

alliances and solidarity. For example, the gene, whose deletions are responsible

for the spinal muscular atrophy (SMA) disease, links patients and

their families to various actors, including the researchers at the Necker

Hospital who took samples of their DNA and ended up locating and identifying

the gene, the clinicians who performed prenatal tests, the

researchers who published articles on the activity of proteins produced by

the gene or worked on models of transgenic mice, and so forth. This

sociotechnical network, with its ramifications all the way to North America,

would never have existed without the activity of this gene that appears in

cell banks, is expressed in the inscriptions produced by instruments, influences

decisions during prenatal diagnoses, appears in articles published by

researchers, and makes tracheotomies acceptable and bearable. Moreover,

and this point is crucial, it would have had neither the same form nor the

same distribution (or ubiquity) if the patients and families had not invested

in each stage of the research, from the gene hunt, to the diffusion of knowledge,

through the creation of research facilities. It is via this process of

inclusion, in which one of the most powerful operators is the gene itself,

that patients exist as recognized actors and progressively shape their own

evolving multiple identities. As Strathern (1999) put it, it is through the

mediation of nonhumans that the social proliferates and human persons are

produced. The gene, hunted, inspected, tamed, or in the process of being

tamed, participates in the construction of long and highly differentiated

sociotechnical networks, transforming monsters into human beings in their

own right, well integrated into constantly evolving webs of relations. As

Rabinow stated, one could say that these constantly reconfigured 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” (Rabinow 1996).

To be recognized, an identity, especially when it is unusual and departs

from regular models, has to become visible and capable of making itself heard.

This is where the path of citizenship and its constant articulation to the path

of cure comes in. These two engagements (in research and in citizenship) are

closely linked.

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Callon, Rabeharisoa / Emergent Concerned Groups 241

To guarantee their social existence it was not only necessary for patients

to be considered as active participants of biological and clinical research,

they also had to be recognized as full-fledged persons by the professions

that normally cared for and helped patients and as citizens in their own

right. In 1989 the combination of the path to cure and the path to citizenship

was the subject of a general policy statement by the then president of the

AFM. This policy was based on the International Classification of Impairments,

Disabilities and Handicaps, published by the World Health Organization in

1980. The classification was based on the fact that due to medical advances,

acute diseases were tending to become chronic, and these chronic diseases

transformed the lives of patients and the role of medicine. It completed the

International Classification of Diseases by recognizing that at the end of the

twentieth century someone’s state of health could no longer be defined

exclusively by the fact of having a disease or not, since the fact of living or

not with impairments that could be the source of disabilities and handicaps

was equally relevant.

The AFM was to adopt that classification, but with an amendment. To

the original three categories of impairments, disabilities, and handicaps, it

added the category of lesions to mark its will to fight against the disease

from its organic causes to its social consequences. The classification as

amended by the AFM clearly indicated that its two objectives—summed up

in the slogan “Help and Cure”—had to go hand in hand. Above all, it

enabled the AFM to match four areas of action to four categories of the

International Classification of Handicaps as defined by it in Table 1.

This scheme associated the path to cure with that of citizenship, with a

common goal: radically transforming the MD patient’s status. From a monster

close to death, the patient became a human being suffering from a disease—

the causes and physiopathological mechanisms of which were being sought in

order to eventually be able to cure it—and a person with a life project aside

from her or his disease.

To put this ontological change into practice, the AFM designed and

developed a series of sociotechnical arrangements enabling patients to

Table 1

The Two Paths and Their Articulation

(1) Lesion → Domain of science The path to cure

(2) Impairment → Domain of medicine The path to cure

(3) Disability → Domain of rehabilitation The path to citizenship

(4) Handicap → Domain of social integration The path to citizenship

Source: Association française contre les myopathies scientific committee, April 28, 1989.

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define and accomplish their life projects. A case in point is the Services

Régionaux d’Aide et d’Information (SRAI), local services for help and

information, which the AFM created in 1989. These services’ mission is to

act as an interface between medicosocial networks and the patients’ families,

whether they are members of the AFM or not. Each service, under the

responsibility of a director, consists of four or five care officers, on average.

These care officers usually have a paramedical background (occupational

therapists, social workers, physiotherapists, specialized educators), although

the work they perform in the SRAI differs substantially from their original

occupation. An ethnographic study lasting more than two years in ten

SRAIs enabled us to characterize this work (Rabeharisoa and Callon 2000).

It consists of analyzing the situation jointly with the family that requests it,

defining a life project for the patient and her or his family, and then helping

them to carry out that project, even if institutional actors see it as unviable.

The care officers are thus professionals who act on behalf of patients and

their families, defending their needs and wants in the medicosocial networks.

They are clearly representatives of the families in the medicosocial community,

are perceived as such, and are committed to their work.

In parallel the AFM set up an individual financial support mechanism to

enable patients and their families to buy the prostheses that they required,

provided they also applied to institutional financiers. The organization furthermore

designed and built dwellings offering the most disabled (those

with SMA in an advanced stage) a social and technical infrastructure that

made an autonomous individual life possible. Finally, the AFM played an

instrumental part in drafting a law on disabilities, passed in February 2005,

in which the rights of people living with disabilities were enshrined, including

their right to compensation.

Articulation of the genetic and prosthetic citizen. In its quest to construct

the collective identity of MD patients, the AFM followed an original trajectory.

It did not simply unite individuals and make them aware of their

similarities and common interests. Instead, it manufactured their identity by

putting together heterogeneous elements. This can be described as a

process of articulation that in the public sphere allowed the expression of

and the demand for an identity shaped by scientific and technical exploration,

an identity made of genes, proteins, and various sociotechnical prosthetic

arrangements. We could say that it is a matter of articulating genetic and

prosthetic identities as genetic and prosthetic citizenships (Heath, Rapp,

and Taussig 2004). This sentence, which obviously simplifies the process,

nevertheless shows the extent to which it is impossible to dissociate the

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Callon, Rabeharisoa / Emergent Concerned Groups 243

political and scientific dimensions of the AFM’s actions. We see why we

would be wrong to limit this history to laypersons’ engagement in research.

These emergent groups comprised of patients and their families carry with

them the construction of new (genetic and prosthetic) identities that beg for

recognition. It would also be wrong to conceive of the organization’s history

in the same terms as that of a regular social movement (Hess, forthcoming).

The detour via research and the integration of genes in the construction of

an identity with an uncertain start cannot be dissociated from the struggle

for the recognition of that identity.

In short, the AFM has managed to reconfigure the collective in which we,

and MD patients, live. It would be more appropriate to refer to a common

world, rather than a collective, for the result obtained by the AFM is not limited

simply to the extension of the list of existing social actors. MD patients

join the collective, entangled with their genes and prostheses, and impose

new sociotechnical agencements (Callon 2007). Their inclusion redefines not

only the constitution of the collective but also the boundaries and relations

between society and nature, and the idea of a world does justice to that heterogeneity.

This inclusion means that they are now able to influence both the

industrial design and the commercialization of new therapies.

The AFM’s plan (Table 1) indicates precisely the road to take to achieve

that reconfiguration: to structure and articulate scientific, medical, and

social spaces so that they can host the gene and the enabling prostheses as

operators of the link between patients and other human beings.

Economic Markets, Technoscience, and the

Production of Emergent Concerned Groups

Before addressing the question of the mechanisms that could explain the

emergence of concerned groups, it would be useful to clarify the meaning

of the term, based on the example provided by the AFM. A group is qualified

as concerned when its formation is strongly contingent on the existence

of matters of concern shared by its members. Initially, there may well have

been no particular relations between the members of the still inchoate

group. Then, owing to the activities of some of them and to the publicity

given to difficulties that first seem to be individual, they gradually move

closer to one another as they share their emotions and develop common

actions. Provided they become visible and explicit, matters of concern then

serve to link up and to bind the members of the group.

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There are many different types of matters to be concerned about. The

most interesting matters for us as far as this article is concerned share three

characteristics that are clearly illustrated by the AFM case:

1. The patients and their parents who formed the association in the early

1960s were immersed in deep uncertainties: although their diseases had

been given names, very little knowledge was available about the nature of

the diseases, their causes, possible therapies, and directions to be explored.

2. Faced with such difficulties and uncertainties, they became engaged in

investigations and inquiries that sometimes led them to invest in fullblown

research and innovation. They then contributed to the constitution

and organization of research collectives, mobilizing not only members of

the group but also a whole range of professionals, including researchers

and experts. They participated in the orientation of research and development

and in the shaping and adjustment of the results obtained.

3. These investigations rapidly revealed a series of problems or issues that

patients and their allies imputed to the technosciences and to their modes

of development or organization. In the case of the AFM these problems

stemmed from the low level of investment in research and innovation

devoted to MD and, more generally, to compensation for disabilities. But,

as shown below, technosciences, together with markets, can generate

other types of issues.

In the following pages, we will consider only the groups that are concerned,

like the AFM, with uncertainties related to technoscience and, in

order to ease these uncertainties, have decided to launch collective investigations:

the outcome will contribute to configuring their nascent hybrid identity.

Furthermore, groups that are concerned can experience many different

evolutions and transformations. We must keep in mind that the history of

the AFM is very peculiar. Through the years and owing to the actions

undertaken by the association, MD patients have ended up forming a recognized

group. Their cause has become legitimate, and they have gained

the resources and influence that enable them to mobilize research, industry,

and political power to support their actions. This type of success is fairly

rare. Many groups concerned are not able to thoroughly and permanently

establish their existence; they remain in a state of emergence and sometimes

end up disappearing.

This diversity of possible developments raises two questions: one

concerning emergence as such and the other concerning consolidation (or

disappearance). It could very well have been the case that the scientific and

clinical investigations developed and supported by the AFM failed to produce

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any viable solution. Or the cause of disabled persons may never have resounded

in the French society, the Téléthon may have been a total flop, industry may

have refused to consider rare diseases, the AFM may not have had the political

skills it has proved to have, and so on. The conditions of success and failure

are at least partly distinct from those of emergence. In this article we concentrate

on the question of emergence, not only because it precedes consolidation

or disappearance, but also because (a) it matches a source of social

dynamics that has received very little attention until now (the connection

between the development of the technosciences and the proliferation of the

social) and (b) it raises a series of specific questions related to the functioning

of economic markets as well as scientific and political institutions.

The causes for the emergence of such groups that become concerned by

uncertainties surrounding technoscientific developments are numerous. In

the second part of this article, we focus on the role of economic markets.

Economic markets play an important part in orienting the development of

science and techniques and in selecting their applications. First, we show

how, in general, they contribute toward the appearance of matters of concern

and emergent concerned groups, which have the three characteristics

mentioned above. We distinguish two categories of emergent concerned

groups that we call orphan groups and affected groups. We then suggest that

the growing importance of the network as a modality of economic coordination,

coupled with the transformation of the objects on which science and

technology work, tend to accelerate the production of emergent concerned

groups by economic markets.

Economic Markets

The application of science and technology studies and, in particular, of the

ANT approach to the analysis of economic markets has highlighted the

importance of their technological and material components. In this perspective

markets are better described as collective sociotechnical arrangements

that (a) organize the design, production, and circulation of goods as well as

the transfer of the property rights attached to them, and (b) construct a space

of calculation allowing the assessment and especially the pricing of these

goods involved in their commercialization (Callon and Muniesa 2005; Callon

and Caliskan 2007; MacKenzie 2006). Considered as a collective sociotechnical

arrangement, an economic market is caught between framing and overflowing:

it is the constant tension between these two demands that explains

the emergence of matters of concern and, in particular, the role of the technosciences

in that production (Callon 1998).

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To simplify, throughout the rest of this article we consider only a subset of

all matters of concern produced by the framing of markets and the resulting

overflowing, namely, those that lead to the appearance of orphan groups

and affected groups, two categories of emergent concerned groups.4

Framing and orphan groups. The appearance of orphan groups is related

to sociotechnical lock-ins, one of the most visible consequences of the

framing, which allows economic markets to function as collective calculating

devices. The phenomenon of sociotechnical lock-in has been studied

from both the empirical and the theoretical points of view. It is a particular

case of a more general mechanism: path dependency (Callon and Cohendet

1999; Abbot 2001).

Sociotechnical lock-in reflects the privilege progressively granted to

certain technical and scientific options. Due to increasing returns to production

and adoption, economic agents (designers, producers, distributors, and consumers)

prefer investing in existing technologies rather than launching into

the exploration of alternatives. As these investments are made, the framing of

markets becomes more difficult to question. Sociotechnical lock-in thus

results in the drawing of a boundary that creates a divide and introduces an

asymmetry between those agents that can participate in the market and those

that are rejected by it. The latter can feel excluded because existing markets

do not meet their demands and fail to take them into consideration. In situations

of well established lock-in (yet always exceptional and provisional), this

exclusion is particularly striking and strong: only the supply and demand that

fit into selected technological options can be expressed. Granovetter and

McGuire’s (1998) exemplary analysis of the history of the U.S. electricity

industry, with its irreversible choices concerning frequencies and production

technologies, is a perfect illustration of this type of development. Another

example is the French civil nuclear industry. As Hecht (1998) showed, the

choice of the light water technology, made in about 1970 by a small number

of actors, framed the development of the French industry for several decades

and excluded other possible technological and economic options.

Because of the privilege given to a small number of scientific and technical

options, some demands, needs, or expectations cannot be taken into consideration.

The know-how and knowledge that would be necessary for them

to be taken into account do not exist. This provides the grounds for the

likely emergence of groups that, based on this fact, decide to embark on

investigations that will enable them to explore new options, to define more

clearly the problems facing them, and to seek possible solutions. We have

borrowed the word “orphan” from David (1986) to describe these groups

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that are excluded from the development of certain markets and that therefore

explore alternative worlds.5 The AFM’s history is a striking illustration of

such situations. In the early 1960s virtually no clinical or biological research

existed on neuromuscular diseases. At the time of the genetic boom and

without the intervention of patient organizations in the United States and

Europe, and especially the AFM, these diseases would have been probably

considered as secondary (or treated simply as exceptions).6

Examples abound of such situations in which orphan groups mobilize.

Their matter of concern is the fact of not or no longer being taken into

account in the development of markets. By fighting against exclusion, they are

struggling for a fairer allocation of resources devoted to the technosciences.7

Case studies attest to the diversity of the strategies followed and the forms

of organization opted for by orphan groups to escape from situations of

lock-in and the exclusions they produce.8

The example of Linux (von Krogh and von Hippel 2003) shows that the

engagement of what are known as lay people is but one prospect among

many others. The frame imposed by Microsoft in the form of an economic

monopoly based on sociotechnological lock-in was at the origin of the

emergence of orphan groups closely concerned with this situation. Most of

these groups consisted of computer scientists determined to fight against

Microsoft’s economic and technical monopoly. The history of Linux shows

that emergent concerned groups are not necessarily formed around laypersons

(Linus Torvalds, the initiator of the movement, was a Finnish student)

even if they soon include them. In the cases of both the AFM and Linux,

there are orphan groups that are concerned and preoccupied by an ongoing

framing that prevents their demands, expectations, and projects from being

taken into consideration. In both cases these groups invent other forms of

organization of research and innovation that are original compared to the

open science or private innovation models. But in the case of Linux it is

professionals who take the initiative, while in the AFM it is laypersons. In

short, there are several ways of being orphaned and various strategic

options for no longer being so.

One of the common characteristics of lockout strategies is the redefinition

of the list of actors (the so-called stakeholders) who mobilize and coordinate

to organize the exploration of new paths, to reorient research, and

(possibly) to find solutions to the problems encountered and thus to overcome

situations of exclusion. The inclusion of new actors and issues can

eventually (although not necessarily) result in a reframing of the markets

themselves that are strongly incited to take into account new preoccupations,

as in the case of AFM. Callon’s work (1980b) on the electric vehicle

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and the research and innovations related to it in the 1960s in France and

Steve Epstein’s work (1995) on AIDS and clinical trials could be reformulated

along the same lines. What counts is not so much the fact that laypersons

are active or that unexpected experts decide to enter the field; it is the forms

of organization and coordination that these orphan groups promote: open

hybrid collectives; distributed action and cognition; flexible coordination,

often in the form of networks, and never in the form of paradigmatic

groups; and the possible inclusion of laypersons.

Overflowing and affected groups. The framing needed for markets to

function cannot be total. This impossibility does not correspond to what

economists call market failure. It is the price to pay for a market to function,

irrespective of its form as a sociotechnical agencement. Because they are

framed, markets overflow. The hunt for overflowing involves new framing

that triggers new overflowing and so on.9 Market overflowing is a second

source of emergence of concerned groups. Economists refer to externalities

but, for reasons explained elsewhere, we prefer the more general concept of

overflowing.

To draw up a systematic inventory of the overflowing associated with the

functioning of markets, one needs simply to revert to the description of the

sociotechnical arrangements comprising them (Callon and Muniesa 2005).

Overflowing can affect—either independently or simultaneously—goods,

agencies, or systems of relations established between agencies and goods.

In the following, to simplify, we consider a limited subset of overflowing

that is well documented from both an empirical and a theoretical point of

view and is closely associated with technoscientific issues.

The first category of such overflowing consists of those that are generated

by goods and their circulation. They correspond more or less to the externalities

described by economists. Examples of such overflowings include

invisible prions that escape from firms and jump over species barriers, electromagnetic

fields that frighten people living close to mobile telephone

antennae, toxic waste, greenhouse gases, asbestos, transgenic plants that no

one is sure can be confined forever, and so forth. This overflowing can

entail costs for those who suffer because of it; it can threaten health and

destroy the beauty of landscapes. But it can also have positive effects in all

the sectors covered by the generic terms “culture” or “knowledge.” Goods

encapsulating know-how and knowledge can overflow and make available

to third parties resources that they use to develop their own lines of investigation

and possibly to produce new goods. That is why it is preferable to

refer to affected groups rather than hurt groups, the term used in some of

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Callon’s earlier writings (2003). One can be affected by overflowing without

necessarily suffering on account of it. What matters is that the affection

triggers actions, explorations, and investigations. Collectives are formed that

have the same characteristics of hybridization and distributed coordination

as those previously encountered. Examples abound (Brown 1992; Brown

et al. 2006), but we would like to mention a particular study by a Japanese

colleague devoted to a disease called itai-itai that affected people living

downstream from a mine. This story is interesting because it describes the

creation of a collective (over a twenty-year period) that included the people

living near the mine, university researchers and their equipment and instruments,

lawyers, and then gradually engineers and researchers from the mine,

politicians, and, finally, cadmium itself with its unexpected circulation and

reactions. This collective not only solved the problem of cadmium overflowing

(and the taming of it), it also contributed to innovations that made the

mine cleaner, economically more efficient, and socially more responsible

(Kaji 2004).

Economic agents can also be the source of overflowing. One of the best

documented cases is that of engineers, researchers, or technicians who

leave their firm or research center and put their competencies, know-how,

or social networks to the service of new projects. Because of the framings

that restrict their initiatives within the organization in which they work,

they try their luck elsewhere. From the point of view developed in this article,

this type of overflowing is particularly productive when these mobile professionals

enter into partnerships with existing emergent orphan groups. It

was indeed in cooperation with researchers marginalized by their institutions

that the AFM was able to explore new research paths at the beginning

of its existence.

The Proliferation of Emergent Concerned Groups

Economic markets are sociotechnical arrangements whose framings and

overflowings trigger the appearance of groups (orphaned or affected)

concerned by the development and applications of the technosciences.

There is good reason to believe that the production of such concerned

groups will intensify or accelerate. This acceleration is explained both by

the introduction of new forms of organization of markets (networking) and

by the evolution of the content of the technosciences themselves. Once

again, to simplify we will mention only some aspects of this proliferation.

To illustrate our argument we have deliberately taken examples only from

the health field.

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Increasing overflowing. Networks as a form of coordination and organization

of economic markets are becoming increasingly predominant (Callon

1992; Amin and Cohendet 2004). Certain reasons for this trend are related to

the emergence of what some call a new innovation regime (Joly and Hervieu

2003). This regime is characterized by the establishment of flexible cooperation

between the multiple and heterogeneous actors who are often spread

throughout different regions or countries (academic research labs, consultancy

firms, public regulatory agencies, government services, firms engaged

in subcontracting, local authorities, and consumers). Innovation is thus the

result of numerous interactions between a growing number of diverse actors

(DeBresson and Amesse 1991). These relations of cooperation, organized

into techno-economic networks, are accompanied by competition that is no

longer between firms but between networks fighting against each other to

impose their own innovations. Techno-economic networks therefore have to

demonstrate their capacity to react and adapt; the alliances that they enter into

constantly change and evolve. This form of organization—characterized by

both an intensification and a constant reconfiguration of connections, flows,

exchanges, and circulations that take place gradually along with changes of

configuration—has multiple opportunities for overflowing. It becomes quite

difficult and even impossible for actors to monitor and control all the movements

of all circulating entities. Leakages in markets organized as networks

of innovation are more difficult and more costly to prevent than in traditional

markets. These overflowings, always difficult to identify, generate matters of

concern, especially due to their possible effects on human health. Many sanitary

matters of concern are directly associated with the potential overflowing

of networks (e.g., genetically modified organisms, bovine spongiform

encephalopathy, and blood contamination).

The evolution of the technosciences and their content increases as well this

propensity that markets have to overflow. First, the development of network

technologies amplifies markets’ tendency to organize themselves in networks

and accentuates the difficulties of framing their functioning. Second, private

or public-sector R&D laboratories constantly produce new beings or entities

that have to find a place in our societies. Rising R&D budgets, along with

researchers’ greater productivity, automatically produce a demographic expansion

of these new beings. To put it plainly, due to the growing investments in

technological innovations, our societies are becoming more and more cluttered

with nonhuman beings, so it is increasingly difficult for a new product or

entity to find its place. This difficulty is all the greater since, as we have seen,

the acceleration of innovation often goes hand in hand with the concentration

of innovative activities on the exploitation of existing trajectories

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rather than on the exploration of new options (sociotechnical lock-in).

Often this creates an incentive to slacken the requirements on new products

or services: research intended to study their possible overflowing is carried

out less rigorously, so they can be substituted more easily for existing products.

A clear illustration of this trend is the pharmaceutical industry, where

new drugs are intended mostly as substitutes for existing ones. This concentration

makes substitution more and more difficult. As a result, there is

a strong temptation for pharmaceuticals (and regulatory bodies) to launch

and authorize products whose overflowing is less well framed (in this case

they produce secondary effects that are disregarded: Pignarre 2003; Abraham

and Lewis 2002). This laxness can trigger protest by affected groups.

Third, the technosciences contribute in an even more original way to the

accelerated production of overflowing. One way of identifying this contribution

is by underscoring the differences between disciplinary regimes and

changes in their hierarchy. The physical sciences have a propensity to shape

well-framed, purified entities and objects, in short, entities and objects

whose behavior scarcely changes when they move from the laboratory into

society. A CD-ROM driver acts in (almost) the same way in the laboratory

as in a private home. With chemistry, by contrast, things start becoming more

complicated. The chemical substances that share our lives and sometimes

facilitate them are constantly acting, reacting, combining, and triggering

chain reactions (chemical terminology attests to this activity). In short, they are

less predictable, more difficult to frame, and the source of sudden overflowing

or even explosion. Finally, with biology, biotechnology, and especially genomics,

the difference is even greater. Entities are not simply reactive; they live their

lives, even once they have left the laboratory. What happens within the laboratory

does not make it possible to foresee entirely what is likely to happen

outside. For a life science object, existing is overflowing (Bonneuil, Joly,

and Marris 2008 [this issue]). A vector used to transfer a gene is alive; a cell

in which a foreign gene has been introduced can become cancerous and

proliferate in unexpected ways. The recent book by Kupiec and Sonigo

(2003) has shown this proliferation by pointing out that with recent developments

in genetics, the preceding model and its reductionism have been

seriously challenged (see also Fox-Keller 1996; Rose and Novas 2005). It

is increasingly difficult to liken the gene to a program and the gene’s action

to the accomplishment of that program because of numerous interactions,

interdependencies, feedbacks, and random events. Here again, the disciplinary

repertoire is telling, with its distinction between in vitro experiments,

experiments on live models, and in vivo experiments. These entities out of

life science laboratories are thoroughly social, and they mix with us by living

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their own lives, which we have to take into account (Rémondet 2004). With

them, matters of concern and, consequently, emergent groups will undoubtedly

proliferate.

Transformations of the technosciences coupled with the increasing

prevalence of networks contribute to the proliferation of opportunities for

overflowing and consequently to the proliferation of matters of concern

leading to the emergence of affected groups.

Stronger framing. Competition between techno-economic networks multiplies

the opportunities for overflowing. But network markets simultaneously

produce strong framing for at least three reasons. First, they favor forms

of externalities (network externalities) that generate increasing returns to both

production and consumption and, consequently, lock in trajectories: technoeconomic

networks become irreversible and spread (Callon 1992).

Second, and more subtly, competition between techno-economic networks

results in increasing singularization of products proposed to consumers. In

this growing form of economic competition each consumer, user, or beneficiary

of a service is differentiated from the others; each network tends to

establish a (temporary) monopoly enabling it to harness a specific demand

that it has actively coproduced with the consumer or user. In this strategic

configuration, a network organization is a huge asset. It makes it possible to

assemble competencies and know-how that allow for viable fine-tuning between

supply and demand (Callon 1995). This trend affects numerous markets and,

as highlighted by Nunes (2003), especially the health field where its effects

are becoming increasingly visible. For example, even in the case of cancer,

which is a well-known and widespread disease, “the set of diseases [under the

label of cancer] can be defined as the outcome of polygenic dynamics, a

range of factors acting on different levels or scales of biological organizations

and multiple intersections of one and the other with environmental processes,

social organization, life styles and consumer practices, available medical

technologies and access to the latter, timely interventions of health professionals

and the existence and effectiveness of adequate environmental and

public health policies” (Nunes 2003).

The technosciences contribute to this growing tendency toward singularization,

as is clearly the case in the health sector with the rise of

genomics and proteomics: each human being can be characterized, at least

in principle, as an ill being, in his or her own way that is different from

other human beings. It follows that due to the very fact of this singularization,

diseases are destined to become rare and consequently threatened,

with the prospect of becoming orphans.10 Generally speaking, for the firm

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Callon, Rabeharisoa / Emergent Concerned Groups 253

the individualization of the offer allowed by the endless differentiation of

customer profiles is a considerable asset since it implies close collaboration

with its customers and consequently allows their attachment and loyalty

(Callon, Méadel, and Rabeharisoa 2002; von Hippel 2004). But in exchange

the firm, for the sake of economic viability, has to construct families of

individual profiles that permit a form of rationalization (e.g., through modularization)

of production and distribution. The result of individualization

might be the exclusion of the most heterodox and heteronomous profiles,

those that cannot be related to prevalent classes. To stick to the health sector

example, therapies will perhaps—and here we are speculating—be targeted

at certain genetic profiles or terrains, that is, the most frequent, the

most similar, and . . . the most lucrative. Some empirical findings point to

a strategic evolution of this nature. The AFM, for instance, recently introduced

the concept of a model disease: faced with the endless differentiation

of rare genetic diseases and especially neuromuscular diseases, the organization

tries to reconstruct families of diseases that could possibly be treated by

similar therapies (Callon 2006). This reframing intended to manage the proliferation

of orphan patients inevitably leads to new exclusions: model diseases

and the therapies they involve exclude certain diseases.11

According to Lakoff (forthcoming) the personalization of medicine

(using the technological platform of pharmacogenomics) that gives pharmaceutical

companies opportunities to market toward specific patients subgroups

is frequently difficult to implement due to technical and commercial

reasons. An alternative strategy, also based on pharmacogenomics, is the following:

instead of considering that drugs and therapies have well-defined

targets, one must define “illness in term[s] of that drug or therapy to which

it responds: a successful response tells us what the person is suffering from.

. . . The task is then to find the right patients, those on whom the drug shows

demonstrable effects, and consequently to delineate the most salient population

as [one] of drug responders” (Lakoff, forthcoming). This strategy is still

a powerful device for drawing boundaries between persons who are included

and others who are excluded. Thus, by personalizing medicine or by finding

the right patient for the right drug, firms try (rather successfully) to overcome

the problem of the increasing costs of clinical trials. In any case pharmacogenomics

could lead to therapeutic innovations and to families of drugs

that delimit the population and enact the identity of the patients who can be

treated (see also Pignarre 2001). As Lakoff (forthcoming) notes, “These new

pharmaceutical circuits function both to include and to exclude patients from

medication.”

Under the effect of this coupling of markets as networks and the life sciences,

we witness the proliferation of orphan diseases and consequently of

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254 Science, Technology, & Human Values

orphan patients who, whether enraged or not, will be ready for protest and

mobilization. This rareness, constantly produced and extended by the joint

action of sciences and markets, entails formidable problems of justice. It is no

longer a matter of conceiving of an equitable distribution of existing goods

between well-identified individuals and groups. The question is situated

higher upstream, in the allocation of resources required for the conception

and production of goods (e.g., new therapies) that do not yet exist and are

intended for groups whose numbers and identity are not known with precision.

This evolution and the mobilization it spurs have become visible. For

example, the number of rare diseases, whose identification and diagnosis

are partly related to the pervasiveness of genetics, is increasing rapidly and,

along with it, so is the number of orphan diseases. The coprofiling of diseases,

patients, and treatments seems inexorable. In France (as in other countries),

this has resulted in the constitution of the Alliance Maladies Rares (Alliance

for Rare Diseases) that aggregates matters of concern to groups that sometimes

have no more than ten members. Their slogan is “diseases are rare but

patients are numerous” (four million people are said to be concerned in

France today).12

A third reason for which networks accentuate the force and debatability

of framing is that the question of the limits to impose on the market constantly

arises. The proliferation of cooperation and alliances has to be made

compatible with the appropriation and distribution of profits generated by

the delivery of goods and services to consumers. The more networks

spread, become complex, and multiply, the more crucial issues of framing

market relations become. This is reflected primarily in intense controversies

and conflicts about the definition and attribution of intellectual property

rights. Such debates are particularly visible in the case of the so-called

commercialization (or privatization) of academic science (Dasgupta and

David 1994). Apart from the tug of war between two institutions that try to

maintain their own autonomy and decision-making capacity (open science

versus private science), it is the balance between exploration and exploitation,

between reinforcement of existing trajectories and maintenance of

diversity, that is at play (Callon 1994). These questions that apply to all sectors

are more acute in the biological field, where it is becoming increasingly

difficult to draw a line between so-called basic (and therefore open)

research and so-called applied (and therefore private) research (Sampat

2006). This demand for stronger and more controlled framing of property

rights is a source of concern for groups that may believe they have been

excluded by such frames. One of their claims concerns a revision of the

modalities of allocating property rights: in the health field, patient organizations

are increasingly aware of these problems.

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To sum up, as a tentative conclusion to this section, we would simply like

to say that as illustrated in the case of the health sector, the joint and intertwined

evolution of the technosciences and economic markets leads, through

the dual process of framing and overflowing, to the proliferation of matters

of concern related to the orientations and applications of science and techniques.

These matters of concern are characterized by strong uncertainties that

might prompt the people concerned to embark on collective investigations

intended to clarify problems, to identify possible solutions, and to elaborate

an identity that largely depends on the results obtained.

Concluding Remarks

The first aim of this article was to present the concept of emergent concerned

groups. Taking the example of the AFM, we highlighted some of the

characteristics of these groups whose creation and trajectories are related

by actors themselves to the appearance of matters of concern produced by

the development of the technosciences. Faced with deep uncertainties and

ignorance, they embark on investigations that enable them progressively to

construct an identity that can be described as a sociotechnical assemblage.

At the same time they try to arrange the collective as well as economic

activities in such a way that they can find their place.

We then posited a possible proliferation of these emergent concerned

groups. Economic markets, designed as sociotechnical arrangements, produce

matters of concern related to the mechanisms of framing and overflowing.

The upsurge and increasing pervasiveness of the form of market organization

described as techno-economic networks triggers an acceleration of this

process. The main result is a proliferation of affected groups and orphan groups,

to be observed especially in the health field. The quantitative and qualitative

evolution of the technosciences contributes toward this acceleration.

As the AFM example clearly shows, these groups are not simply an

extension of the list of regular stakeholders usually referred to in governance

literature such as public authorities, firms, academic researchers, consumers,

and so forth. They disrupt the conventional definition of social roles and their

division, and they highlight the limits of existing economic, political, and

scientific institutions. First, due to the instability of constantly evolving identities,

interests, expectations, and projects characterizing these nascent groups

(instability related to the uncertainties surrounding matters of concern), the

fact that established markets could take into account their demands and needs

is highly problematic. For example, it was only after heavy investments in

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research, over a long period of time, that MD patients were able to specify

their demands and to frame industrial developments. Second, taking their

existence into account politically is difficult in the framework of institutional

apparatus that we have described as being structured around a double delegation:

delegation of political representation to quasi professionals of politics

and delegation of the definition of research and innovation activities to professional

scientists. This double delegation indeed makes the existence of

legitimate spokespersons difficult in their ability to express identities or

interests that are still inchoate. What emergent concerned groups question,

at least on the fringes, is the double-delegation model (Callon 2003).

These last remarks point to the necessity of developing more theoretical

and empirical research in order to gain a better understanding of how emergent

concerned groups could eventually contribute to the reconfiguration of

relations between technoscience, politics, and markets.

To begin with, and this applies to all sectors, quantitative analyses ought to

be undertaken. In the health field, the French case, for which we are starting

to have substantial data, confirms the growing importance of emergent concerned

groups in research activities as well as their presence in the public

sphere to defend the new identities that their engagement in research

enables them to construct. First, we have undertaken the compilation of a

database on patient organizations and their investments in research. This

database shows that 118 of the 213 organizations on which data were collected

have a scientific committee and 84 finance research projects. Second,

the creation in 2000 of The Alliance Maladies Rares is proof of the upsurge

of emergent concerned groups in the health sphere and on the French

scientific and political scene. The number of organizations that have joined

The Alliance has more than tripled in three years, and current membership

totals 141 organizations. One of the alliance’s objectives is to promote a

research policy coupled with demands for full citizenship of people with

rare diseases. Actions undertaken include the creation of an institute for rare

diseases, intended to promote research in this area, as well as the organization

of international congresses on rare diseases and handicaps, bringing together

patients and their families, medical professionals, researchers, and representatives

of the public authorities and pharmaceutical industry. It would be

interesting to extend such surveys to other countries.

Furthermore, it would be useful to identify, from both an analytical and

an empirical point of view, the economic sectors and technoscientific

domains that (or which), like health are increasingly contributing toward

the emergence of concerned groups. What is true for health probably also

applies to sectors in which networked organizations exist and where the

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level of unpredictability of goods is high and R&D is intensive (Bonneuil and

Thomas 2004). Qualitative as well as quantitative investigations in these

sectors have yet to be undertaken in a systematic way.

Third, the questions of emergent groups’ ability to impose their presence

in the public sphere, to really reconfigure markets, and to weigh in on the

orientation and organization of research and innovation are other areas requiring

investigation. The question regarding the influence of national institutional

contexts is worth asking. Comparative studies would be useful for determining

the extent to which national frames amplify or curb these trends.

Finally, despite the increasing role of concerned groups, a romantic view

of direct democracy and the historical revenge of laypersons on experts

would be a serious misinterpretation. Concerned groups, both orphan and

affected, are doubtlessly actors that contribute toward the constitution of

research collectives of a new kind, collectives that are more open, flexible,

and distributed. When they are successful, these collectives produce networks

of alliances that generally result in a reorganization, and not in an upheaval,

of the modes of functioning of markets (e.g., by amending the intellectual

property regime) and/or of scientific institutions. Moreover, despite their

openness, these collectives draw new boundaries; they re-enclose after opening

up. When they are related to scientific and technical areas such as genomics,

and when they articulate political advocacy to their research activities, they

might impose new models of collectives and subjectivities. For example, the

engagement of patient organizations in genetic research causes them to favor

forms of collective life and subjectivity that some observers describe by

means of concepts such as genetic subjectivity and genetic citizenship

(Callon and Rabeharisoa 2004).13 In addition, as the case of the AFM shows,

their success could cause them to turn into more conservative concerned

groups with perfectly stabilized interests and firmly established power: emergence

is a transitional property. A great deal of work is required to determine

whether, as some people claim, the engagement of such (emergent) concerned

groups into economic and political life will make the appearance of a

new regime of innovation possible.14