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. 2019 Oct;10(4):489-499.
doi: 10.1007/s12687-019-00418-7. Epub 2019 Mar 27.

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  5 , Pauline Roche  5 , Virginie Dorian  5 , Aline Maillard  6 , Edouard Lhomme  6 , Laura Richert  6 , Laurent Pasquier  7 , Linda Akloul  7 , Nicolas Taris  8 , Didier Lacombe  5   9
Affiliations

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

Cécile Zordan et al. J Community Genet. 2019 Oct.

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: Ethical issues; Family communication; Genetic counselling; Genetic information disclosure; Responsibility; Template letter.

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Conflict of interest statement

The authors declare that they have no conflict of interest.

Figures

Fig. 1
Fig. 1
Study 1: what do you think about the term “genetic anomaly”? *p < 0.01
Fig. 2
Fig. 2
Study 3: main reported feelings after reading both letters. *p = 0.0005, **p = 0.006
See this image and copyright information in PMC

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