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Evaluation of the template letter regarding the disclosure of genetic information within the family in France

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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.

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Acknowledgments

The authors would like to thank the FMBA for funding the research project “Evaluation of a template of an information letter to relatives in the scope of genetic testing practice” as well as the patient association and the general practitioner, Dr. Francoise Rouquier, who helped us in the writing of letter B. The authors are grateful to Pr Heather Skirton for comments and reading of this manuscript.

Funding

This project was funded by the French Biomedical Agency. The funder had no influence in the design or execution of the research.

Author information

Authors and Affiliations

  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

    Cécile Zordan, Eva Toussaint, Pauline Roche, Virginie Dorian & Didier Lacombe

  2. Service de Génétique Médicale, CHU de Toulouse, Toulouse, France

    Laetitia Monteil

  3. Service de Génétique Médicale, CHRU de Montpellier, Montpellier, France

    Emmanuelle Haquet

  4. Département de Diagnostic Moléculaire, Synlab Genetics, Lausanne, Switzerland

    Christophe Cordier

  5. Unité de Soutien Méthodologique à la Recherche Clinique et Epidémiologique, Service d’Information Médicale, CHU de Bordeaux, Bordeaux, France

    Aline Maillard, Edouard Lhomme & Laura Richert

  6. Service de Génétique Clinique, CHU de Rennes, Rennes, France

    Laurent Pasquier & Linda Akloul

  7. Service de Génétique Oncologique, CRLCC Paul Strauss, Strasbourg, France

    Nicolas Taris

  8. Inserm U1211, Université de Bordeaux, Bordeaux, France

    Didier Lacombe

Authors
  1. Cécile Zordan
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  2. Laetitia Monteil
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  3. Emmanuelle Haquet
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  4. Christophe Cordier
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  5. Eva Toussaint
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  6. Pauline Roche
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  7. Virginie Dorian
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  8. Aline Maillard
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  9. Edouard Lhomme
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  10. Laura Richert
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  11. Laurent Pasquier
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  12. Linda Akloul
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  13. Nicolas Taris
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  14. Didier Lacombe
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Corresponding author

Correspondence to Cécile Zordan.

Ethics declarations

All procedures followed were in accordance with the ethical standards. This study was approved by the Research Ethics Committee (CPP SOOM III: Comité de Protection des Personnes Sud-Ouest et Outre-Mer III). Informed consent was obtained from all participants included in this study.

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The authors declare that they have no conflict of interest.

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Zordan, C., Monteil, L., Haquet, E. et al. Evaluation of the template letter regarding the disclosure of genetic information within the family in France. J Community Genet 10, 489–499 (2019). https://doi.org/10.1007/s12687-019-00418-7

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  • DOI: https://doi.org/10.1007/s12687-019-00418-7

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