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The multiplicity of knowledge and the trembling of institutions

Vololona Rabeharisoa
Traduction de Liliana Doganova
Cet article est une traduction de :
La multiplicité des connaissances et le tremblement des institutions [fr]
Autre(s) traduction(s) de cet article :
Multiplicidad de conocimiento y el temblor de las instituciones [es]

Résumé

In the last few years, the engagement of patient organizations –and more broadly groups concerned with an issue involving scientific knowledge– in the production of knowledge has become a classic topic in social sciences. The experiential knowledge produced by these groups and organizations is a challenge for scientific institutions. This article proposes a few paths that researchers interested in the anthropology of knowledge could explore in order to understand how scientific institutions become (or not) sensitive to such experiential knowledge and to the transformations that this knowledge could induce in the governance of research and innovation.

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Texte intégral

1To celebrate its 10th anniversary, Revue d’Anthropologie des Connaissances (RAC) invited me for an exercise that I am not used to. The terms of the invitation were the following:

A contribution, a priori short, around 15-20,000 characters, which could take several forms, including: a retrospective review and/or a critical reading of what has been published (in Revue d’Anthropologie des Connaissances) over the past 10 years; an analysis and reflection on the state of research in this multidisciplinary field (the anthropology of knowledge, as defined in the editorial project of Revue d’Anthropologie des Connaissances); a programmatic reflection; or any thoughtful contribution relevant to Revue d’Anthropologie des Connaissances.

2RAC and its readership will forgive me, I hope, if I limit myself to what is familiar to me: the research questions I have been working on in the last few years, focusing on the engagement of patient organizations in the production of knowledge, and, building on these questions, a few paths which are not necessarily well arranged and which I believe are worth exploring in the next years.

3In the last ten years, research in the social sciences has shown that the production of knowledge is no longer the scientific community’s exclusive domain of competences and prerogatives. Less than two centuries after the birth of the laboratory, patient organizations and local collectives concerned by pollution set to collect testimonies, facts and figures, and to confront them to “scientific data”. In some cases, ensued exchanges between these “researchers in the wild”, to use Michel Callon, Pierre Lascoumes and Yannick Barthe’s terms (2001), and researchers in the lab. More often, conflicts broke out: conflicts over authority, both epistemic and moral, opposing ordinary people armed with the knowledge they drew from their experience of a disease or an environmental problem, on the one hand, to specialists who possessed knowledge acquired after many years of experimentation performed according to precisely codified methods and procedures, on the other hand.

4While “research in the wild” is certainly not new –knowledge about the fauna and flora, or even about climate, has long benefited from the meticulous observations of “science amateurs”–, it is accompanied today by a movement that overflows it, as policy makers recognize the need to associate these “researchers in the wild” in scientific work. Research programs are full of key words such as “collaborative research”, “stakeholder engagement”, the “new governance of science” and “interdisciplinarity”. In order to face up to the democratic deficit of which it is accused, the European Union is now promoting the development of “Science with and for Society”, after a period of “Science and Society” and a transition phase of “Science in Society”. The problem is, such a daring project is shaking the very foundations of our scientific institutions. Created during the 20th century, at least in France, these institutions result from the confinement of the laboratory, they consolidate “disciplinarity” and are not made to welcome the “researchers in the wild”, sometimes turbulent, who impatiently wait at their doorstep. And, as Madeleine Akrich showed in her inaugural talk at the 4S/EASST 2016 conference in Barcelona (Akrich 2016), when their doors half-open, institutions tend to smooth and homogenize experiential knowledge so that it can fit the imperatives of scientific research.

5This observation should not project us into a romantic vision of experiential knowledge which would be more real, as compared to scientific knowledge, which would be more reductive. Experiential knowledge, as shown by Tomasina Borkman in her study of self-help groups (Borkman 1976), is not given: its production requires extracting facts from the magma of information that we accumulate in the course of our everyday life, and putting them on trial. To “make reality speak”, one always has to collect, to sort out, to confront, and to arrange diverse and scattered observations. However, the production of experiential knowledge differs from the production of scientific knowledge in one key respect: it aims at making sense of people’s experience, at giving rise to issues that scientific institutions do not necessarily put on their agenda. From this point of view, while the production of scientific knowledge is driven by a concern for the robustness of chains of reference, the production of experiential knowledge deliberately frees itself from this constraint. Here is an example to illustrate this point. In our work on patient organizations, we noted their regular use of surveys. Surveys are a common tool of investigation in science. However, the surveys conducted by patient organizations are often accompanied by testimonies. In the presentation of results, testimonies are put on the same level as quantitative data, which forces us to consider such “anecdotal evidence” (Moore and Stigloe, 2009) on an equal footing with numbers (Akrich, Leane, Roberts et al., 2014; Rabeharisoa, Moreira and Akrich, 2014). In a similar vein, in their work on UK Alzheimer’s Disease Society and Alzheimer Society of Ireland, Tiago Moreira, Orla O’Donovan and Eatoine Howlett (2014) have shed light on the demand expressed by patient organizations for social scientists to change the methods they commonly used in order to collect the words of patients who had supposedly lost their cognitive capacity and the ability to express themselves; this, in turn, led to transforming these organizations into collectives composed not only of families and carers, but also of patients themselves. What is at stake, at least for these organizations, is not choosing between different representations of the same reality, but adding up realities that are different because they are differently situated. What is at stake, is not making multiple points of view converge, but maintaining, in a risky dialogue, the multiplicity of realities. It is at this point that the question of the scope of action and the functioning of scientific institutions becomes good to think with again.

6Institutions are not a priori equipped to absorb and maintain multiple realities in a generous tension. Yet, some have ventured into this perilous exercise, and others have even invented themselves to this end. In the field of health, I am thinking of ANRS (Agence nationale de recherche sur le sida et les hépatites virales, the French agency for AIDS and viral hepatitis research) which serves as an example for having recognized HIV/AIDS organizations not only as political actors in their own right, but also as epistemic actors. Within ANRS, patient organizations are involved in discussion and decision-making, although this is not always a smooth process. Key to this achievement have been the pugnacity of patient organizations and the engagement of researchers and clinicians in the collective adventure. I am also thinking of INSERM (Institut national de la santé et de la recherche médicale, the French National Institute of Health and Medical Research), whose Directorate General has equipped itself with a Discussion Group with Patient Associations (Groupe de réflexion avec les associations de malades (Gram)) –a group which, as I know from having taken part in it, does not spare its efforts (nor does it spare the institution to which it belongs) to make heard, and considered, what patients have to say and propose. Other initiatives have been implemented, in many fields and in many countries, to make sure that concerned groups and civil society organizations have their say in the matter. And they do not emanate from institutions alone. I am thinking of the initiative that ATD Quart Monde (ATD Fourth World, a nonprofit organization fighting against poverty) implemented a few years ago in order to cross different types of knowledge: this involved collective work carried out by people suffering from exclusion, on the one hand, and professionals from the medical field and social services, on the other hand. The objective was clearly to allow those who, most often, do not speak, to voice their experience and preoccupations on equal terms with their counterparts in institutions, with a critical impact, in a way that could transform how people look at each other, and that could change practices.

7These initiatives, emanating from institutions and from concerned groups and civil society organizations as well, need to be examined in order to understand how they do, or do not, add up multiple realities. Beyond the somewhat lenitive rhetoric over the new governance of science, we have to see, in practice, what the work that aims at instituting the multiplicity of knowledge consists in. This has already started in the field of STS. In France, the editorial project of RAC makes it an ideal venue for publishing research on these questions. The stakes, both intellectual and political, are important. As I said, while civil society organizations and concerned groups certainly enjoy today a political recognition, the experiential knowledge they produce has trouble being considered as relevant and legitimate knowledge. Rather than endlessly lamenting the incompatibility of our institutions, or romanticizing civil society organizations and concerned groups, it would be more fruitful to ask ourselves what these institutions and these organizations are endowed with, and what they could endow themselves with, in order to make us sensitive and maintain our sensitivity towards the multiplicity of knowledge.

8A second path of research relates to the transformations of the individuals and the collectives who tackle the multiplicity of knowledge. The research we conducted on the mobilization around rare diseases offers eloquent examples (Rabeharisoa and Callon, 1999). We witnessed the trajectory of scientists who had started on the bench as biologists, then, as they exchanged with patient organizations, oriented themselves towards the clinic, and then returned to the bench with new research questions stemming from their observations, enriched by patients’ observations. Or research engineers who had started by working within scientific institutions, then spent many years within patient organizations, and then returned to these scientific institutions with, at least for some, objectives which were not limited to the performance of laboratory work, but included, for example, the mediation between research teams and patient organizations. The circulation of people, probably transformed by having visited other places and immersed themselves in different realities, would be interesting to examine. It is not only a question for the sociology of professions, relating to the careers of scientific workers, but a question for the anthropology of knowledge, in the almost original sense of the term: who are these nomad specialists, what do they do, what do they transport with them and what do they leave behind over their travels? I remember, in the course of our research, a very young girl who suffered from a rare disease, telling the pediatrician-geneticist: “You and I, we are the same. I have the gene in my body, and you have the gene in your lab.” “The same”? What exactly does it mean to share or exchange attributes between people who are a priori so different? I remember also researchers-clinicians close to patient organizations speaking of “our children” to designate young patients. “Our children”? Is this a manifestation of the doctor’s classic paternalism, or a profound change affecting these professionals’ understanding of who they are and ought to be? The question is worth asking.

9Conversely, ordinary people who are interested in scientific knowledge and who contribute to its production and mobilization, are sometimes prey to “cognitive passions”, to use the beautiful phrase coined by Aurélie Dumain, Florian Charvolin and Jacques Roux (2013). That was the case of adults with Asperger’s Syndrome, gathered in organizations which distinguish themselves from organizations gathering families of children suffering from autism. These people, who are passionate about knowledge coming from neurosciences and who actively contribute to the experimentations conducted by scientists, identify themselves as people who are not autistic, but diverse, other, singular, on the neuronal level, with competences hitherto unseen. Have they become, as Steven Epstein (1995) observed about some AIDS activists, experts among experts, losing their soul and their identity in the maelstrom of science? The question, once again, is worth asking: it relates to the work of self-description which, as Marylin Strathern suggested, “(…) establishes the uniqueness through enrolling the radical divide between self and other” (Strathern, 1999 : 172), and which involves the mediation of objects and scientific knowledge.

10The two research paths that I have just mentioned are largely inspired by research that has examined the articulation of experiential knowledge and biomedical knowledge. How about the articulation of experiential knowledge and knowledge coming from economics and management, regulation and law, which are key in medical and health affairs? On this question, everything, or almost, is yet to be done. Researchers in the social sciences have looked at economics and at the construction and the regulation of markets, widely renewing the field of economic sociology and the study of valuation processes. RAC has echoed this line of research (RAC, 2015, Volume 9, Issue 1). This work can be pursued in different directions, and particularly one direction that has received little attention so far: the formation of prices. While the formation of prices, which is an essential dimension of market “agencements” (Callon, 2013), has hitherto remained a quasi-inaccessible object of research, patient organizations and NGOs start to speak out and denounce the exorbitant prices of drugs and the devastating effects they have on the accessibility of treatments in the South, but also of treatments against some diseases, such as rare diseases. Regarding rare diseases, patient organizations have gone into action to trigger the emergence of economically and socially sustainable business models, and of “fair and controlled prices” as the AFM (Association Française contre les Myopathies, the French Muscular Dystrophy Association) has put it. Through the actions they undertake, they aim at “valuing” the experience of patients and families so that their knowledge, their competences, their propositions, are translated into therapeutic R&D projects in which they intend to participate, right beside the industry and regulatory bodies. The first observations that Liliana Doganova and I have made (Rabeharisoa and Doganova, 2016) clearly show that the burst of patient organizations in the drug market and the pricing mechanisms strongly and tensely engages moral sentiments, questions of intellectual property, issues of social justice –in short, a multiplicity of often divergent concerns. I was mentioning earlier a set of keywords in national and European research programs; another one of them is “responsible research and innovation”. Since policy makers invite us to do so, let us give meaning to this timeworn expression by looking at the valuation of experiential knowledge and at the work carried out by civil society organizations in the construction of markets and the formation of prices, in the field of medicine and in other fields. RAC, I have no doubt, will be a good companion in this adventure. So long live Revue d’Anthropologie des Connaissances!

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Bibliographie

Akrich, M. (2016). Inquiries into experience and the multiple politics of knowledge. Keynote plenary 1: To what extent is embodied knowledge a form of science and technology by other means? 4S-EASST Meeting, Barcelona, 2016 August 31st. i3 Working Papers Series, 16-CSI-02.

Akrich, M., Leane, M., Roberts, C. & Nunes, J. A. (2014). Practising childbirth activism: A politics of evidence. BioSocieties, 9(2), 129-152.

Borkman, T. (1976). Experiential knowledge: A new concept for the analysis of self-help groups. The Social Service Review, 3(50), 445-456.

Callon, M., Lascoumes, P. & Barthe, Y. (2001). Agir dans un monde incertain. Essai sur la démocratie technique. Paris : Le Seuil.

Callon, M. (2013). Qu’est-ce qu’un agencement marchand ? In M. Callon et al., Sociologie des agencements marchands (pp. 325-440). Paris : Presses des Mines.

Dumain, A., Charvolin, F., & Roux, J. (dir.) (2013). Les passions cognitives. Enquêtes sur les dimensions pragmatiques et politiques de l’aimer connaître. Paris : Éditions des archives contemporaines.

Epstein, S. (1995). The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology & Human Values, 20(4), 408-437.

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Moreira, T., O’Donovan, O. & Howlett, E. (2014). Assembling dementia care: Patient organisations and social research. BioSocieties, 9(2), 173-193.

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Rabeharisoa, V. & Doganova, L. (2016). Making rareness count. Testing and pricing orphan drugs. Communication to the workshop « Evidentiary practices: Testing, measuring and accounting in global infrastructures », LOST Group of the University of Halle, Berlin, 21-22 April 2016. i3 Working Paper Series, 16-CSI-03.

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Référence électronique

Vololona Rabeharisoa, « The multiplicity of knowledge and the trembling of institutions »Revue d’anthropologie des connaissances [En ligne], 11-2 | 2017, mis en ligne le 01 juin 2017, consulté le 30 mars 2020. URL : http://journals.openedition.org/rac/2130

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Auteur

Vololona Rabeharisoa

Professor of sociology at MINES ParisTech, PSL Research University, and a researcher at CSI -- Centre de sociologie de l’innovation, i3 UMR CNRS 9217, she is interested in the increasing involvement of civil society organizations in scientific and technical activities. She studies the transformative effects of this involvement on the modes of production and dissemination of knowledge, and on the forms of participation and social and political contestation. She has been investigating, for many years, the engagement of patient organizations with biomedical and therapeutic research, and the governance of health, notably in the area of rare diseases. Beyond the biomedical domain, she explores the emergence of new public issues around genomics.

Address: Centre de sociologie de l’innovation (UMR CNRS 9217 i3), Mines ParisTech - PSL Research University, 60, Boulevard Saint Michel, FR-75272 Paris Cedex 06 (France).
E-mail: vololona.rabeharisoa[at]mines-paristech.fr

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