Vololona Rabeharisoa

Biography

Vololona Rabeharisoa is a researcher in the sociology of science and health, whose work focuses on the involvement of patients and advocacy groups in knowledge production and health policy governance. Her research explores, in particular, the dynamics of “evidence-based activism,” in which patients’ experiential knowledge and scientific knowledge intersect to influence medical practices and public policy decisions. She has analyzed the reconfigurations of pharmaceutical innovation networks—such as in the cases of rare diseases and gene therapies—highlighting local strategies and issues of treatment accessibility. Her work also addresses the tensions between the uniqueness of individual experiences and medical categorizations, as well as the transformations in clinical practices driven by genetic advances. Her expertise covers the intersections between lay expertise, health democracy, and health policy, with a particular focus on neurodegenerative diseases and genetic conditions.

Publication(s)

2025
How social pharmaceutical innovations are addressing problems of availability, accessibility and affordability of drugs for rare diseases DOI : 10.1186/s13023-025-04132-1
2025
Living with the rare late-onset genetic disease CADASIL: Improvising “tactics” to appropriate biomedical knowledge and technology DOI : 10.1016/j.socscimed.2025.117797
2024
The temporalities of prices: ‘Value-based pricing’ in pharmaceutical markets DOI : 10.1080/03085147.2024.2346037
2024
Genetic diagnosis of individuals at risk of CADASIL: prospect for future therapeutic development DOI : 10.1007/s00415-024-12640-6
2023
Patient and public involvement in the benefit-risk assessment and decision concerning health products: Position of the Scientific Advisory Board of the French National Agency for Medicines and Health Products Safety (ANSM) DOI : 10.1136/bmjgh-2023-011966
2023
ON THE MULTIPLICITY OF LAY EXPERTISE: AN EMPIRICAL AND ANALYTICAL OVERVIEW OF PATIENT ASSOCIATIONS’ ACHIEVEMENTS AND CHALLENGES DOI : 10.1093/oxfordhb/9780190848927.013.5
2020
Care through cohort studies: Sociological survey of the PROOF cohort study on vascular and cognitive aging DOI : 10.1093/pubmed/fdz187
2019
Community mobilization around rare diseases: From science to politics and economics; [La mobilisation associative sur les maladies rares, entre science, politique et économie]
2018
Medicine and justice; [Médecine et Justice] DOI : 10.1684/sss.2018.0124
2017
The multiplicity of knowledge andthe trembling of institutions; [La multiplicité des connaissances et le tremblement des institutions] DOI : 10.3917/rac.035.0141
2017
MULTIPLICIDAD DE CONOCIMIENTO Y EL TEMBLOR DE LAS INSTITUCIONES DOI : 10.3917/rac.035.0143
2017
THE MULTIPLICITY OF KNOWLEDGE AND THE TREMBLING OF INSTITUTIONS DOI : 10.3917/rac.035.0142
2016
Round Table 6: What are the responsibilities of the society towards the people affected by rare diseases?; [Table ronde 6: Quelles sont les responsabilités de la société vis-à-vis des personnes atteintes de maladies rares?] DOI : 10.1051/medsci/201632s112
2014
From Europeanization to European Construction: The role of European patients’ organizations in the shaping of health-care policies DOI : 10.1080/14616696.2014.946069
2014
The entanglement of scientific and political claims: Towards a new form of patients' activism DOI : 10.4324/9781315741871
2014
From 'politics of numbers' to 'politics of singularisation': Patients' activism and engagement in research on rare diseases in France and Portugal DOI : 10.1057/biosoc.2014.4
2014
Attention deficit hyperactivity disorder in France and Ireland: Parents' groups' scientific and political framing of an unsettled condition DOI : 10.1057/biosoc.2014.3
2014
Evidence-based activism: Patients', users' and activists' groups in knowledge society DOI : 10.1057/biosoc.2014.2
2013
Sociological theory and the sociology of health and medicine in international journals; [Théorie sociologique et sociologie de la santé et de la médecine dans les revues internationales] DOI : 10.1684/sss.2013.0103
2012
Lay expertise in patient organizations: An instrument for health democracy; [L'expertise profane dans les associations de patients, un outil de démocratie sanitaire] DOI : 10.3917/spub.121.0069
2011
Genome-sequencing anniversary. Socializing genetic diseases. DOI : 10.1126/science.1203631
2009
Staging and Weighting evidence in biomedicine: Comparing clinical practices in cancer genetics and psychiatric genetics DOI : 10.1177/0306312709103501
2008
The growing engagement of emergent concerned groups in political and economic life: Lessons from the French association of neuromuscular disease patients DOI : 10.1177/0162243907311264
2008
Medical judgment and medical decision-making in a high-uncertainty situation: When clinical practices meet genetics; [Décision et jugement médicaux en situation de forte incertitude: L'exemple de deux pratiques cliniques à l'épreuve de la génétique] DOI : 10.1684/sss.2008.0103
2006
Practices and ontologies in psychiatric genetics; [Pratiques et ontologies en psychiatrie génétique] DOI : 10.3917/sss.241.0007
2006
Towards a new form of medical work in psychiatry genetics: The case of autism; [Vers une nouvelle forme de travail médical? Le cas d'une consultation en psychiatrie génétique de l'autisme] DOI : 10.3406/sosan.2006.1674
2006
Erratum: Vers une nouvelle forme de travail médical? Le cas d'une consultation en psychiatrie génétique de l'autisme (Sciences Sociales et Sante (March 2006) 24, 1 (99))
2006
From representation to mediation: The shaping of collective mobilization on muscular dystrophy in France DOI : 10.1016/j.socscimed.2005.06.036
2004
The economy of qualities DOI : 10.4324/9780203022450
2004
Gino's lesson on humanity: Genetics, mutual, entanglements and the sociologist's role DOI : 10.1080/0308514042000176711
2004
Patients and scientists in French muscular dystrophy research DOI : 10.4324/9780203413845
2003
Research "in the wild" and the shaping of new social identities DOI : 10.1016/S0160-791X(03)00021-6
2003
The struggle against neuromuscular diseases in France and the emergence of the "partnership model" of patient organisation DOI : 10.1016/S0277-9536(03)00084-4
2002
The economy of qualities DOI : 10.1080/03085140220123126
2002
The involvement of patients' associations in research DOI : 10.1111/1468-2451.00359
2001
Patient organisations's identity claims and their relations with specialists: The case of the French Muscular Dystrophy Organisation; [Un nouveau modèle de relation entre les malades et la recherche médicale: Les cas de l'association française contre les myopathies] DOI : 10.1016/S1240-1307(01)80097-2
2000
Patients' associations and research. I. From self-help groups to patients' associations; [Les associations de malades et la recherche. I. Des self-help groups aux associations de malades] DOI : 10.4267/10608/1762
2000
Patients' association and research. II. Modalities of patients' associations involvement into research activities in France; [Les associations de malades et la recherche. II. Les formes d'engagement des associations de malades dans la recherche en France] DOI : 10.4267/10608/1558
1999
Labour sociology applied to surgery: How to make the patient as a person vanish?; [De la sociologie du travail appliquée à l'opération chirurgicale : Ou comment faire disparaître la personne du patient?] DOI : 10.1016/s0038-0296(99)80014-4
1998
The participation of patients in the process of production of knowledge: The case of the french muscular distrophies association; [L'implication des malades dans les activités de recherche soutenues par l'association française contre les myopathies]
1998
Avant-propos
1992
The management and evaluation of technological programs and the dynamics of techno-economic networks: The case of the AFME DOI : 10.1016/0048-7333(92)90017-X
1991
Tools for the Evaluation of Technological Programmes: An Account of Work Done at the Centre for the Sociology of Innovation DOI : 10.1080/09537329108524030

Teaching

Social, Political, and Environmental Issues (SPE)

Lecturer

The module includes lecture sessions and computer lab sessions. Total number of 1.5-hour sessions, excluding the exam: 18, of which 11 are lecture sessions, 5 are computer lab sessions, and 2 are for the written exam. Lecture Hall Sessions The lecture hall sessions are devoted partly to presenting course content and partly to interacting with students. Four major themes are covered during the sessions: - Social classes, diversity, and beliefs: 4 sessions - “Other” societies (introductory elements of anthropology): 2 sessions - Criticism, controversies, and social movements: 3 sessions - Politics of the Anthropocene: 2 sessions For each of these themes, an analytical model and the corresponding forms of evidence validation are presented. A handout is provided to students. Before each session, a newspaper article addressing issues related to the lecture (in an “opinion piece” format, debate pages of major daily newspapers, etc.) is distributed to students. During the lecture and in interactive sessions with students, this article is used to highlight the relevance of the course’s topics and the presented analytical model to current events. Small-Group Classes The objective of the small-group classes is to continue the process of studying and understanding analytical models in the social sciences by applying them to specific issues and starting with the students themselves: it is the students who will be required to present a social science analysis by giving a presentation on a book they have read. At the beginning of the course, students divide into groups of three and choose a book from among the 40 titles offered to them. They have one month to read the book and prepare a presentation. They receive guidance from a CSI faculty member: one week before the presentation, a “preparation session” is held during which students present their work to the tutor and can seek their help to delve deeper into the subject or improve their understanding. For the PC sessions, the class is divided into five groups. At each session, two books are presented. The presentations last 20 minutes, with 25 minutes set aside for comments and a question-and-answer period. The books were selected so that the two presented at each session would encourage the emergence of contrasting reflections and debates regarding differing analytical approaches to collective phenomena in the social sciences, and so as to cover a consistent range of topics. In total, the topics covered in the four seminar sessions are as follows: Social Issues The Construction of Modern Political Society Science, Technology, and Society Environmental Conflicts In addition to the four sessions dedicated to presentations, one session is devoted to preparing for the in-class exam.

Controversies

Lecturer

FORMAT RESOURCES Introduction: Contextualization through viewing and analyzing a 25-minute documentary Participatory class project documentary Bibliographic research: press, websites, reports Project; class project + personalized follow-up poly · Analysis of documents: identifying key players, developing a timeline, identifying main points of controversy Project; PC + personalized support poly Establishing contacts for interviews, conducting interviews Lectures + Flipped Classroom + project poly Bibliographic research using scientific databases Course + Project poly Training in Cortext or an equivalent system (data mining, semantic analysis, network analysis, scientometrics) Course + PC poly Different types of controversy Flipped classroom poly Problem-based learning PC + personalized support Reading social science articles related to the controversy PC Writing assignment independent work + personalized support Preparation for the oral exam independent work + personalized support

ATHENS - MP05 - Health and Medicine in Europe - Social, Political, and Ethical Issues at the National and European Levels

Course Director

PhD supervision

2024 The etiology of childhood cancers in the face of environmental health mobilizations BARILLER Isaac
2016 A "Knowledge Bank"? An investigation into the nature and politics of the World Bank's expertise BOILEVE Felix
2015 Micro-politics of poverty: The epistemic and political fragmentation of the world through randomized controlled trials ABDELGHAFOUR Nassima