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582.More information
The question of the community control of health in Québec is presently polarized around the debate on the Local Community Service Centers (LCSC) which were established by the reform of health and social services in 1971.
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587.More information
In 2002, the debate on the risks of gene therapy was initiated following the annoucement that two children included in a clinical trial developed serious adverse effects. In January 2005, the debate was reignited following the interruption of the “bubble kids protocol” at the Hôpital Necker in Paris. We have thus investigated the ethical stakes involved in decisions to stop protocols. This work was carried out by a multidisciplinary team combining ethics researchers and geneticists. We studied the specific participation of researchers, patients, official institution, ethics committees and patient associations in the processes that can lead to an interruption of trial.We also analysed the criterion judged most relevant for halting a trial. Finally, we analyzed the perspective of the actors implicated directly in the provision of gene therapy, by means of a questionnaire. All the individuals contacted had presented a scientific poster at the European Society of Gene Therapy. 62 out of 350 persons, from 17 countries, responded to our questionnaire. According to these respondants, decisions to stop a trial should be taken after consultation with researchers, patients, the ministry, national agencies or ethics committees. Legitimacy was accorded to joint decision-making by researchers, patients and committees. Serious incidents, and surprisingly less serious incidents, clearly emerge as criterion for stopping a trial. We conclude by analyzing the ethical consequences, such as risk/benefit ratios, regulatory processes and responsibility, associated with these criterions and decisions to stop a trial.
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589.More information
Giving an unfavorable prognostic is one of the most difficult of situations in the relationship between doctors and their patients. This will be taken into account here as a paradigmatic case of ethical issues inherent in this specific professional relationship. We will examine the fluctuating role play and expectations in the doctor-patient relationship, and its unstable status within our professional culture which vacillates between two opposite poles: maintaining the patient's personal identity and the paradoxical wish of the latter to be taken care of. What does the patient want: a decision-making doctor, often described as paternalistic, or rather a doctor-informant, often thought indifferent and insensitive? The requirement of a communication ethic is situated between these two extremes and through the formal wording that the obligation of informing is.
Keywords: éthique clinique, relation patient-médecin, droit à la vérité, éthique de la communication, clinical ethics, patient-doctor relationship, right to truth, communication ethic