Evaluation of the template letter regarding the disclosure of genetic information within the family in France
- 19 Downloads
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.
KeywordsGenetic information disclosure Template letter Family communication Responsibility Genetic counselling Ethical issues
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.
This project was funded by the French Biomedical Agency. The funder had no influence in the design or execution of the research.
Compliance with ethical standards
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.
Conflict of interest
The authors declare that they have no conflict of interest.
- American Society of Human Genetics , Social Issues Subcommittee on Familial Disclosure(1998), Professional disclosure of familial genetic information. Am J Hum Genet 62(2):474–483 at 474Google Scholar
- Base SAS® 9.3 Procedures Guide Copyright © 2011, SAS Institute Inc., Cary, NC, USAGoogle Scholar
- Cal (1976) Text of Tarasoff v. Regents of the University of California, 17 Cal. 3d 425, 551 P.2d 334, 131 Cal. Rptr. 14Google Scholar
- Catania C, Feroce I, Barile M, Goldhirsch A, De Pas T, de Braud F, Boselli S, Adamoli L, Radice D, Rossi A, Spitaleri G, Noberasco C, Bonanni B (2016) Improved health perception after genetic counselling for women at high risk of breast and/or ovarian cancer: construction of new questionnaires - an Italian explory study. J Cancer Res Clin Oncol 142(3):633–648. https://doi.org/10.1007/s00432-015-2062-7 CrossRefGoogle Scholar
- Clarke A, Martin R, Kerzin-Storrar L, Halliday J, Youg MA, Simpson SA, Featherstone K, Foorest K, Lucassen A, Morrison PJ, Quarrekk OWJ, Stewart H, Collaborators (2005) Genetic professionals’ reports of nondisclosure of genetic risk information within families. Eur J Hum Genet 13(5):556–562CrossRefGoogle Scholar
- d’Audiffret D, de Montgolfier S (2016) Pratiques professionnelles et enjeux éthiques associés à l’ajout du conseil génétique dans la loi sur l’information à la parentèle en génétique humaines ?. 8èmes Assises de Génétique Humaine et Médicale. Lyon. 3-5/02/2016Google Scholar
- Forrest LE, Delatycki MB, Curnow L, Skene L, Aitken MA (2010) Genetic health professionals and the communication of genetic information in families: practice during and after a genetic consultation. Am J Med Genet A 152A(6):1458–1466Google Scholar
- Gorrie A, Archibald AD, Ioannou L, Curnow L, McClaren B (2017) Exploring approaches to facilitate family communication of genetic risk information after cystic fibrosis population carrier screening. J Community Genet 9(1):71–80. https://doi.org/10.1007/s12687-017-0337-1 CrossRefPubMedCentralGoogle Scholar
- Kerzin-Storrar L, Wright C, Williamson PR, Fryer A, Njindou A, Quarrell O, Donnai D, Craufurd D (2002) Comparison of genetic services with and without genetic registers: access and attitudes to genetic counselling services among relatives of genetic clinic patients. J Med Genet 39(12):e85CrossRefPubMedCentralGoogle Scholar
- Lahlou-Laforet K, Albuisson J, Mazzella JM, Moliere D, Laurent-Puig P, Jeunemaitre X, Consoli S, Gimenez-Roqueplo AP (2014) Décret du 20 juin 2013 relatif à la procédure d’information aux apparentés. Appliquer la loi sans traumatiser la parentèle : analyse psychologique et propositions pratiques. 7èmes Assises de Génétique Humaine et Médicale. Bordeaux. 29–31/01/2014Google Scholar
- Law no.2004–800 dated of 6 August 2004 - art. 4. (2004). Code de la santé publique. L1131-1. JORFGoogle Scholar
- Law no.2011–814 dated of 7 July 2011 - art. 2. (2011). Code de la santé publique. L1131-1. JORFGoogle Scholar
- Legislative Decree 2013-527 20th June 2013 concerning the implementation of conditions of kin information in the context of an examination of genetic characteristics for medical purposes. R. 1131-20-2 du code de la santé publique. JORF n°0143, 22 June 2013, p10403Google Scholar
- Legislative order fixing the sample letter addressed by the physician to potentially affected members of the family pursant to Article R. 1131-20-2 du code de la santé publique. JORF n°0143, 22 June 2013, p10405Google Scholar
- Legislative order defining the rules of good practice applicable to the implementation of kinship of information in the context of an examination of genetic characteristics for medical purposes pursant to Article R. 1131-20-2 du code de la santé publique. JORF n°0293, 19 December 2014, p21495Google Scholar
- Wright C, Kerzin-Storrar L, Williamson PR, Fryer A, Njindou A, Quarrell O, Donnai D, Craufurd D (2002) Comparison of genetic services with and without genetic registers: knowledge, adjustment, and attitudes about genetic counselling among probands referred to three genetic clinics. J Med Genet 39(12):e84CrossRefPubMedCentralGoogle Scholar