Evaluation of the template letter regarding the disclosure of genetic information within the family in France
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ORIGINAL ARTICLE
Evaluation of the template letter regarding the disclosure of genetic information within the family in France Cécile Zordan 1 & Laetitia Monteil 2 & Emmanuelle Haquet 3 & Christophe Cordier 4 & Eva Toussaint 1 & Pauline Roche 1 & Virginie Dorian 1 & Aline Maillard 5 & Edouard Lhomme 5 & Laura Richert 5 & Laurent Pasquier 6 & Linda Akloul 6 & Nicolas Taris 7 & Didier Lacombe 1,8 Received: 30 March 2018 / Accepted: 15 March 2019 # Springer-Verlag GmbH Germany, part of Springer Nature 2019
Abstract The 2011 French Bioethics Law regarding disclosure of genetic information within families enables health professionals to notify any at-risk relatives directly, with the patient’s consent, using a template letter. To assess the impact of this template letter in terms of understanding, personal feelings and intent to contact a health professional, we conducted a study interviewing patients, members of the public and genetic professionals. Although the main response to the letter was anxiety, this was associated with good understanding of the content and most individuals mentioned intention to contact a health professional. Keywords Genetic information disclosure . Template letter . Family communication . Responsibility . Genetic counselling . Ethical issues
Introduction Electronic supplementary material The online version of this article (https://doi.org/10.1007/s12687-019-00418-7) contains supplementary material, which is available to authorized users. * Cécile Zordan [email protected] 1
Service de Génétique Médicale, Bâtiment Ecole de Sages-Femmes, Groupe Hospitalier Pellegrin, CHU de Bordeaux, Place Amélie Raba-Léon, 33 076 Bordeaux Cedex, France
2
Service de Génétique Médicale, CHU de Toulouse, Toulouse, France
3
Service de Génétique Médicale, CHRU de Montpellier, Montpellier, France
4
Département de Diagnostic Moléculaire, Synlab Genetics, Lausanne, Switzerland
5
Unité de Soutien Méthodologique à la Recherche Clinique et Epidémiologique, Service d’Information Médicale, CHU de Bordeaux, Bordeaux, France
6
Service de Génétique Clinique, CHU de Rennes, Rennes, France
7
Service de Génétique Oncologique, CRLCC Paul Strauss, Strasbourg, France
8
Inserm U1211, Université de Bordeaux, Bordeaux, France
The principles common to most guidelines about the communication of genetic information to families include the individual’s moral obligation to communicate genetic information to their at-risk relatives, the health care professional’s (HCP) encouragement to communicate this information to any atrisk relatives and the support given to the individual throughout this communication process (Forrest et al. 2007). In France, whenever a patient is diagnosed with a genetic anomaly, the HCP has the duty to inform the patient of risks to relatives. It remains the patient’s decision whether or not to communicate this information to their relatives, but HCPs must inform the patient of the potential consequences for the health of their relatives if they do not disclose (Law no. 2004800 of 6 Augu
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