This paper presents the existing legal frameworks, professional guidelines and other documents related to the conditions and extent of the disclosure of genetic information by physicians to at-risk family members. Although the duty of a physician regarding disclosure of genetic information to a patient's relatives has only been addressed by few legal cases, courts have found such a duty under some circumstances. Generally, disclosure should not be permitted without the patient's consent. Yet, due to the nature of genetic information, exceptions are foreseen, where treatment and prevention are available. This duty to warn a patient's relative is also supported by some professional and policy organizations that have addressed the issue. Practice guidelines with a communication and intervention plan are emerging, providing physicians with tools that allow them to assist patients in their communication with relatives without jeopardizing their professional liability. Since guidelines aim to improve the appropriateness of medical practice and consequently to better serve the interests of patients, it is important to determine to what degree they document the 'best practice' standards. Such an analysis is an essential step to evaluate the different approaches permitting the disclosure of genetic information to family members.
Le présent article propose une revue du cadre normatif québécois régissant la relation chercheur-sujet de recherche. Après l’examen des sources des obligations du chercheur en droit québécois, les auteurs procèdent à la nomenclature de ces dernières. Puis ils tentent de démontrer que, malgré la reconnaissance et l’intégration des règles de bioéthique au corpus juridique québécois, l’encadrement normatif de la recherche au Québec, tout comme au Canada, laisse voir des lacunes importantes quant à la protection des droits des sujets de recherche. Ces lacunes sont issues principalement de l’application des règles en droit québécois, du rôle joué par les comités d’éthique de la recherche et par les organismes d’inspection de la recherche et de l’activité professionnelle des chercheurs. Les auteurs soutiennent que la sécurité des sujets de recherche conférée par le droit québécois et le droit canadien est en fait illusoire, cette sécurité étant à l’heure actuelle principalement attribuable à la bonne foi des acteurs engagés dans le domaine de la recherche.
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