DS0805 - Droit, démocratie, gouvernance et nouveaux référentiels

Legal, philosophical and social issues in neurosciences: the deep brain stimulation case – NormaStim

NormaStim - Neuroscience from experiment to daily clinic

Legal, philosophical and socio-anthropological issues of Deep Brain Stimulation

A heuristic example for thinking about translational medicine and chronic disease from a technological care

NormaStim explores the legal, philosophical and sociological issues of neuroscience from a given technology: deep brain stimulation (DBS). <br />DBS is a neurosurgical technology developed since the late 1980s for the treatment of movement disorders, such as Parkinson's disease. It implies the modulation of brain activity through electrodes implanted in patient's brain and connected to a stimulator placed in the chest. This medical device allows a chronic electrical stimulation of brain cells. The physicians can then adjust the stimulation parameters with an external programmer, according to the symptoms and side effects. In the early 2000s, DBS applications were extended to severe forms of psychiatric and neuropsychiatric disorders resistant to conventional treatments (Tourette's syndrome, obsessive-compulsive disorder and depression). <br />The two main hypotheses of the research program are that DBS is : 1) a heuristic example for exploring a range of contemporary health and technological innovation issues; and 2) a heuristic example for studying the transformations induced by neuroscience in healthcare practices and policies or administrative and legal regulation of medical practices, and more broadly, in imaginations and representations. At the frontier between experimentation and care and at the crossroads between neurosurgery, neurology and psychiatry, DBS allows to question various issues such as the transition from basic research to routine care and the development of translational research, the comparison between drugs and medical devices, the experience of patients with chronic neurodegenerative diseases who are experimenting a technological care, and the articulation between social, medical and legal interventions.

NormaStim developed a four-fold approach to overcome three methodological obstacles related to: 1) the access to information; 2) the need to contextualize and specify the issues raised by DBS and by the French and European context; 3) an interdisciplinary program. First, the involvement of neuroscientists, neurosurgeons, neurologists, psychiatrists, psychologists and brain-imagers in the project made easier the access to data and practices; it also fostered the collective reflection. The second is the selection of three fields for observations in Paris, Grenoble and Nantes (interesting for several scientific, medical, organizational or socio-legal reasons). The third is a coordination effort and a desire for close collaboration assumed by a multidisciplinary team of three scientific leaders and supported by the creation of a collaborative platform allowing the availability of documentary and sound archives. The fourth is the inclusion in the project of Canadian researchers likely to support and enrich the comparative work between France and Quebec and the organization of a multidisciplinary research fieldwork and a workshop at the Institut de Recherches Cliniques de Montréal (IRCM).

NormaStim has resulted in an important scientific production. No less than 9 scientific events (national and international meetings and workshops) were organized between 2015 and 2018, including 2 abroad (Montreal, Brussels), in addition to a research seminar in 2015-2016 at Paris Diderot University. A collective book (Editions Hermann, forthcoming in spring 2019) and a journal special issue (Bulletin de la Société d'histoire et d'épistémologie des sciences de la vie, forthcoming 2018) are currently being published. The project members have published articles in national or international journals (22 journal articles) and in books (26 chapters, 14 of which were outside the final collective work). They have also be participated in several national and international events (71 papers, half of which were presented at conferences outside the project).

New collaborative project on therapeutic education for patients (funding application: France Parkinson (granted), IRESP (granted) (ETHE project).

1 website
1 collaborative platform
4 National Interdisciplinary Scientific Events
5 International Interdisciplinary Events (Montreal, Bruxelles, Paris)
5 seminars
1 translational workshop (K. Goldstein)
1 collective book (Editions Hermann, forthcoming in spring 2019)
1 journal special issue (Bulletin de la Société d'histoire et d'épistémologie des sciences de la vie, forthcoming 2018)
22 journal articles
26 chapters in books
71 papers in national and international events.

NormaStim is a 36 months research project dedicated to legal, philosophical and sociological issues in neurosciences, studied through a specific technology: Deep Brain Stimulation (DBS). At the interface between experiment and daily clinic in the field of neurosurgery, neurology and psychiatry, DBS is a well-known therapy but also a research in progress. DBS is thus an interesting case for studying important contemporary questions, notably the links between clinical research and daily medical practice, the comparison between drugs and medical devices, the understanding of care concepts, the way social, medical and legal interventions connect or the transformations of responsibility and liability (civil, criminal, medical…). NormaStim will associate: - a multidisciplinary team of 28 social sciences and humanities researchers, with the cooperation of DBS specialists in Paris, Grenoble and Nantes; - 3 partners well-known in the field of Law (UMR de droit compare); Sociology, Anthropology and History of health and sciences (CERMES3); Philosophy and History of care, medicine and neurosciences (SPHERE). Two hypotheses are at the core of the project: 1) DBS is a key technology for studying contemporary issues in science and health; 2) DBS can be a revelator of the changes induced by neurosciences in the medical, social and legal fields. The research program will develop three axes regarding a) the regulation, standardization and development modalities of DBS; 2) care and life experiences modalities (neurodegenerative diseases, chronicity, normal/pathological/enhancement distinctions, solidarities and mobilizations); 3) Impact of legal context and trials on practices and the other way round (liability, criminal behaviors, expertise).

Project coordinator

Madame SONIA CANSELIER (UMR de droit comparé de Paris)

The author of this summary is the project coordinator, who is responsible for the content of this summary. The ANR declines any responsibility as for its contents.

Partner

CNRS DR Paris A UMR de droit comparé de Paris
INSERM Délégation Paris 11 Centre de recherche Médecine, Sciences, Santé, Santé mentale, Société
UNIVERSITE PARIS 7 Sciences, Philosophie, Histoire (SPHERE)
CRNS CNRS DR IDF O/N

Help of the ANR 358,816 euros
Beginning and duration of the scientific project: September 2014 - 36 Months

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