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Guidelines for Disclosing Genetic Information to Family Members: From Development to Use

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Abstract

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.

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Authors and Affiliations

  1. Programmes de bioéthique, Université de Montréal, C.P. 6128, succ. Centre-ville, H3C 3J7, Montréal, QC, Canada

    Béatrice Godard

  2. Centre de bioéthique, Institut de Recherches Cliniques de Montréal, H2W 1R7, Montréal, QC, Canada

    Thierry Hurlimann

  3. Ethics and Government Affairs, Ethica-Clinica Research Inc., H9P 2VH, Montréal, QC, Canada

    Martin Letendre

  4. Programmes de Bioéthique, Université de Montréal, H3C 3J7, Montréal, QC, Canada

    Nathalie Égalité

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  1. Béatrice Godard
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* INHERIT BRCAs (Interdisciplinary Health Research International Team on Breast Cancer Susceptibility) is an interdisciplinary and international team in oncogenetics directed by Jacques Simard, Director of the Cancer Genomics Laboratory at Centre Hospitalier de l’Université Laval (CHUL) Research Center of the Centre Hospitalier Universitaire de Québec. INHERIT BRCAs was established in January 2001 thanks to funding for Interdisciplinary Health Research Teams (IHRT) of the Canadian Institutes for Health Research (CIHR). This team is composed of 17 principal investigators and clinicians, from seven hospitals and five Canadian universities as well as from the University of Cambridge, United Kingdom, and the Centre International de Recherche sur le Cancer (CIRC) in Lyon, France, an institution of the World Health Organization.

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Godard, B., Hurlimann, T., Letendre, M. et al. Guidelines for Disclosing Genetic Information to Family Members: From Development to Use. Familial Cancer 5, 103–116 (2006). https://doi.org/10.1007/s10689-005-2581-5

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