Vololona Rabeharisoa

The Growing Engagement of Emergent Concerned Groups in Political and Economic Life Lessons from the French Association of Neuromuscular Disease Patients

This article discusses the notion of emergent concerned groups and explores how these groups contribute to shaping the relations between technoscience, 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.

Gino’s lesson on humanity: genetics, mutual entanglements and the sociologist’s role

The identification of the genes responsible for certain serious diseases and the development of tests for identifying carriers of those genes help to put the individuals concerned in the forefront of ethical decisions. These decisions are unavoidable, especially when available knowledge and techniques have already been broadly disseminated. This article presents the case of a limb-girdle muscular dystrophy patient in Reunion Island who refuses to comprehend the lessons of genetics and to become part of the medical and associative networks that implement and diffuse that knowledge. His refusal is interpreted as the rejection of a form of agency and subjectivity, in which the individual is considered as an autonomous subject forced to choose between a number of pre-established options and responsible for the consequences of his choices. Using definitions of humanity and morality presented by François Jullien in his commentary on Mencius, the authors propose to consider that, by refusing, the patient is opting for a different form of morality and humanity. The article also shows how the interview situation constructs a situation that reduces the patient to silence.

Staging and Weighting Evidence in Biomedicine Comparing Clinical Practices in Cancer Genetics and Psychiatric Genetics

This paper seeks to make a contribution to the discussion on what clinical work consists of in biomedicine. It draws on the comparison between two clinical practices: (1) cancer genetics of breast/ovarian and colon cancers; and (2) psychiatric genetics of autism and its related syndromes. We argue that the clinic does not reflect genetic reductionism, nor does it entail a straightforward return to the previous clinical tradition. We show that the clinic is affected by three changes in the practices that we studied. The first change concerns clinical settings: clinical work is now performed by ‘bioclinical collectives’, gathering researchers and clinicians from various disciplines and activities, and conjointly searching biology and pathology. The second change concerns the content of clinical work that we propose to call ‘clinic of mutations’. This clinic involves the intense work of collecting and comparing multiple and heterogeneous data to document the biological nature and the clinical relevance of mutations, whose status is ambiguous and whose effects are uncertain. The third change concerns the dynamics of clinical work, which is now overlapping with research. As a consequence, the elaboration of a judgment and a medical decision is no longer a matter of simply making a diagnosis or prognosis. Rather it consists in accounting for nosographic domains and descriptive and interpretive models of diseases, into which mutations may plausibly play a role. We conclude with a discussion of the form of objectivity underlying clinical work in biomedicine. Our contention is that in the current post-genomic era, thinking of genetic markers as objective proofs of a disease or a risk of disease is definitely inappropriate. Rather, the clinic has to constantly produce the meaning and relevance of mutations and biomedical entities that tend to proliferate and regularly invade the clinical settings.

Tools for the evaluation of technological programmes: An account of work done at the centre for the sociology of innovation

Innovation depends on the e~istcnce of close links between science, technology and the market-place. Technological proi;:rurnmes seek to develop and organize collaboration between the various actors i n these fields i n order to develop strategic skills. This article focuses on tools for managing anti evaluating such programmes, i n terms of quality and relevance of research outfml, effects of the research, and management efficiency. It presents the variety of tools and procedures adopted by the Centre for the Sociology of Innovation (CSI) for the etlale!ation of technological programmes. The tools presented combine quantitative and quditatiue nzethods, interpretation and numerical analysis. It is shown that w~ethods used depend on the questions asked, and that often new tools need to be developed to solve the problems posed.

From ‘politics of numbers’ to ‘politics of singularisation’: Patients’ activism and engagement in research on rare diseases in France and Portugal

This article investigates how the engagement of patients’ organisations (POs) in research relates to the dynamics of their activism in the area of rare diseases. It traces back how certain concerned families and groups elaborated rareness as an issue of equity and social justice, gave shape to what we call a ‘politics of numbers’ for stating the fact of rare diseases as a major public health problem, and promoted patients’ critical involvement in biomedical and therapeutic research as a solution for mainstreaming rare diseases in regular health systems. It then studies three Portuguese and three French POs, which point to the limits of the epidemiological notion of rareness for capturing the compounded and intersecting nature of the bio-psycho-social make-up of their conditions. It finally shows how these critics progressively lead to the emergence of an alternative politics, which we call a ‘politics of singularisation’. At the core of this politics stands a collective and ongoing profiling of conditions and patients, whose similarities and differences relates to the ubiquity of biological pathways and diseases categories. Our contention is that this ‘politics of singularisation’ not only pictures a politics of illnesses which questions the rationale for nosological classifications, but also, and consequently, affects the making of social links by suggesting the simultaneous identification of individual patients and constitution of collectives to which they partake while asserting their specificities.

Socializing Genetic Diseases

The fact that complete genome sequences are now available has had effects on patient advocacy. The fact that complete genome sequences are now available has had effects on patient advocacy.

Des formes de partenariat entre les familles, les enseignantset les spécialistes : l'association HyperSupers et l'école

Cet article analyse les actions en direction de l’ecole entreprises par HyperSupers, l’association francaise de parents d’enfants et d’adultes avec le Trouble deficit de l’attention hyperactivite (TDAH). L’article montre que ces actions s’inscrivent dans une approche pragmatique du trouble, c’est-a-dire une approche qui s’interesse a ce que fait le trouble aux personnes qui en souffrent dans leur vie quotidienne, approche adoptee par l’association face aux controverses et aux incertitudes sur ce qu’est le trouble (ses causes, ses mecanismes, ses manifestations). Dans cette perspective, les actions menees par HyperSupers visent a la fois a apporter des solutions concretes afin d’aider les enfants a surmonter les problemes qu’ils rencontrent a l’ecole, et a proposer une prise en charge multimodale articulant les aspects educatifs, sanitaires et sociaux.

From |[lsquo]|politics of numbers|[rsquo]| to |[lsquo]|politics of singularisation|[rsquo]|: Patients|[rsquo]| activism and engagement in research on rare diseases in France and Portugal

This article investigates how the engagement of patients’ organisations (POs) in research relates to the dynamics of their activism in the area of rare diseases. It traces back how certain concerned families and groups elaborated rareness as an issue of equity and social justice, gave shape to what we call a ‘politics of numbers’ for stating the fact of rare diseases as a major public health problem, and promoted patients’ critical involvement in biomedical and therapeutic research as a solution for mainstreaming rare diseases in regular health systems. It then studies three Portuguese and three French POs, which point to the limits of the epidemiological notion of rareness for capturing the compounded and intersecting nature of the bio-psycho-social make-up of their conditions. It finally shows how these critics progressively lead to the emergence of an alternative politics, which we call a ‘politics of singularisation’. At the core of this politics stands a collective and ongoing profiling of conditions and patients, whose similarities and differences relates to the ubiquity of biological pathways and diseases categories. Our contention is that this ‘politics of singularisation’ not only pictures a politics of illnesses which questions the rationale for nosological classifications, but also, and consequently, affects the making of social links by suggesting the simultaneous identification of individual patients and constitution of collectives to which they partake while asserting their specificities.

From ‘politics of numbers’ to ‘politics of singularisation’

This article investigates how the engagement of patients’ organisations (POs) in research relates to the dynamics of their activism in the area of rare diseases. It traces back how certain concerned families and groups elaborated rareness as an issue of equity and social justice, gave shape to what we call a ‘politics of numbers’ for stating the fact of rare diseases as a major public health problem, and promoted patients’ critical involvement in biomedical and therapeutic research as a solution for mainstreaming rare diseases in regular health systems. It then studies three Portuguese and three French POs, which point to the limits of the epidemiological notion of rareness for capturing the compounded and intersecting nature of the bio-psycho-social make-up of their conditions. It finally shows how these critics progressively lead to the emergence of an alternative politics, which we call a ‘politics of singularisation’. At the core of this politics stands a collective and ongoing profiling of conditions and patients, whose similarities and differences relates to the ubiquity of biological pathways and diseases categories. Our contention is that this ‘politics of singularisation’ not only pictures a politics of illnesses which questions the rationale for nosological classifications, but also, and consequently, affects the making of social links by suggesting the simultaneous identification of individual patients and constitution of collectives to which they partake while asserting their specificities.