La confidentialité des résultats des tests génétiques : les droits des membres de la famille et les obligations des professionnels de la santé : une étude comparée Québec / France

L'information génétique, de manière intrinsèque, concerne non seulement un individu, mais également les personnes qui lui sont liées par le sang. Dans l'hypothèse où une personne refusait de communiquer des informations cruciales pour la santé des membres de sa famille, les professionnels de la santé qui détiennent ces renseignements pourraient se retrouver confrontés à un dilemme, soit le choix entre le respect de la confidentialité ou la communication des infonnations pertinentes dans l'intérêt de la famille. Ce mémoire propose une analyse des règles régissant la confidentialité des résultats des tests génétiques en regard des droits des membres de la famille et des obligations des professionnels de la santé. Une analyse comparative entre le droit québécois et français est effectuée. La législation portant sur la confidentialité est essentiellement fondée sur la protection des droits individuels. Des exceptions législatives sont toutefois prévues dans l'intérêt de certains membres de la famille, mais elles s'adressent uniquement à la famille biologique. La notion de famille est ainsi restreinte spécifiquement dans le cadre de la génétique. Le bris de la confidentialité ne semble pas la solution optimale pour résoudre le conflit entre les droits de la personne concernée et ceux de sa famille et n'est d'ailleurs pas envisagé par les systèmes juridiques québécois et français. Les professionnels de la santé doivent alors mettre l'accent sur l'information et le dialogue avec le patient, ce qui est davantage garant de la protection des droits de toutes les personnes en cause.

Genetic information, by its very nature, concerns not only the individual, but also the persons related to him by blood. Where an individual refuses to share genetic information crucial to the health of his family members, health professionals who hold such information are faced with a dilemma: they must choose between respecting confidentiality and communicating in the interest of family members. This thesis analyses the rules governing the confidentiality of genetic test results with regards to the rights of family members and the obligations of health professionals. A comparative analysis between the laws of Québec and France is undertaken. Legislation dealing with confidentiality is essentiatly based on the protection of the rights of individuals. Legislative exceptions are nevertheless provided in the interest of certain family members, but they are directed only to the biological family. The concept of "family" is thus restricted in the context of the confidentiality of genetic information. Disregarding confidentiality is not the best solution to the conflict between the rights of the person concerned and of those of his family, and such a solution is not contemplated either in Québec or in France. Health professionals must therefore place emphasis on informing the patient, a solution which offers great protection of the rights of all concemed.

Genetic information, by its very nature, concerns not only the individual, but also the persons related to him by blood. Where an individual refuses to share genetic information crucial to the health of his family members, health professionals who hold such information are faced with a dilemma: they must choose between respecting confidentiality and communicating in the interest of family members. This thesis analyses the rules governing the confidentiality of genetic test results with regards to the rights of family members and the obligations of health professionals. A comparative analysis between the laws of Québec and France is undertaken. Legislation dealing with confidentiality is essentiatly based on the protection of the rights of individuals. Legislative exceptions are nevertheless provided in the interest of certain family members, but they are directed only to the biological family. The concept of "family" is thus restricted in the context of the confidentiality of genetic information. Disregarding confidentiality is not the best solution to the conflict between the rights of the person concerned and of those of his family, and such a solution is not contemplated either in Québec or in France. Health professionals must therefore place emphasis on informing the patient, a solution which offers great protection of the rights of all concemed.