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Cobbaut Jean-Philippe, De Bouvet Armelle. De la confiance à la réflexivité (Commentaire). In: Sciences sociales et santé. Volume 23, n°1, 2005. pp. 37-42.

The number of patients with young onset dementia (YOD) (that is before age 65) is estimated at 32,000 in France, and 5000 with onset dementia before 60 years. These patients differ from older ones by the greater number of rares causes (29%), heterogeneity of the presentation among the usual diseases, such as non-amnestic phenotypes of Alzheimer's disease, high frequency of frontal symptoms, and possible genetic origin. These aspects must be taken into account for the diagnosis, often more difficult than in older ones because patients have a little knowledge of the YOD, excepted in the genetics forms. YOD patients can still work or drive a car, and we should choose between the respect for autonomy and the security for the patient and their carers. YOD patients can be more often included in pharmacological trials because they have lower associated disorders. Individual non-pharmacological treatment should be priviledged because they don't easily accept collective activities with other patients over 60 years of age. Excepted for the very young patients (onset before 45), the survival is longer than in late onset dementia, with sometimes severe behavioral problems related to frontal syndrome. In France, the caregiving at home has been improved since the possibility for the YOD patients to receive a financial assistance reserved for the disabled patients, but admission to a nursing home before 60 is very difficult and increases the caregiver burden and perception of unfairness. There is a discrimination between young or older demented patients related to the great difficulty to meet the needs of younger patients, due to the rigidity of the medical and social systems. The presentation of a limited offer for the YOD patients must initiate reflections on our capacities to respect the autonomy and the dignity of the Alzheimer's patients regardless of age.

This article deals with the integration of ethical reflection into the research practices of the project at the Lille Nord-Pas-de-Calais genopole: “Multifactorial genetic pathologies and therapeutic innovations”. The general hypothesis of this text is that changes in research practices in biology (mainly through the use of bioinformatics) imply changes in medical practices, which require critical reflection. This hypothesis could be broken down into three sub-hypotheses: (1) Research in biology is undergoing a complete transformation; (2) Research in biology is a cultural practice, which cannot be reduced to a simple cognitive action; (3) Research in biology is a techno-scientific practice. As for the method, the aim of our research at the Medical Ethics Centre is to elucidate the philosophical and ethical range of biomedical practices. This work entails a double task for reflection. On the one hand, from the revelation of ethical tensions present in these practices, we have to think about what is at stake in these practices, and more broadly in society. On the other hand, we have to analyse the conditions enabling the actors to assume the significance of ethical reflection in their practices. The method set up to undertake this double task could be qualified as “narrative hermeneutics”, as its aim is to attempt to interpret the stakes in practices from proximity with these practices and from what their actors have to say about them. The text then goes on to analyse more specifically the emergence and place of bioinformatics in present-day biomedical research.

Il s’agit dans cet article de montrer comment la mise en œuvre d’une methode d’ethique clinique dans des institutions de recherche biomedicale conduit a un ancrage epistemologique de la reflexion ethique, particulierement pertinent dans l’horizon de la medecine predictive. Deux criteres de nature epistemologique elabores dans le cadre d’une recherche-action a l’Institut Pasteur de Lille, a savoir la mise a l’epreuve de la fiabilite des resultats et la distance critique par rapport aux modeles et theories, ont permis de fonder, avec les acteurs d’un centre de depistage du prediabete, une reflexion ethique a propos de leur pratique. Ces criteres convoquent ces acteurs a une attitude de precaution quant a l’usage qu’ils font des connaissances scientifiques dans le cadre de leur pratique ou s’elaborent simultanement socle de savoir, outil diagnostique et pratique clinique. Plus fondamentalement, ils nous amenent a une reflexion critique quant au recours privilegie fait a la genetique en medecine predictive, et a ses possibles incidences en termes de representations du vivant humain, de la maladie, de la sante, et de la medecine. Cette reflexion en appelle a leur responsabilite afin de mettre en place des conditions permettant d’elaborer et de mettre en œuvre une pratique de prediction qui soit epistemologiquement rigoureuse et humainement soutenable.