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

  • Cécile ZordanEmail author
  • Laetitia Monteil
  • Emmanuelle Haquet
  • Christophe Cordier
  • Eva Toussaint
  • Pauline Roche
  • Virginie Dorian
  • Aline Maillard
  • Edouard Lhomme
  • Laura Richert
  • Laurent Pasquier
  • Linda Akloul
  • Nicolas Taris
  • Didier Lacombe
Original Article
  • 19 Downloads

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 

Notes

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.

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.

Supplementary material

12687_2019_418_MOESM1_ESM.docx (15 kb)
ESM 1 (DOCX 15 kb)

References

  1. 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
  2. Base SAS® 9.3 Procedures Guide Copyright © 2011, SAS Institute Inc., Cary, NC, USAGoogle Scholar
  3. 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
  4. Cameron LD, Sherman KA, Marteau TM, Brown PM (2009) Impact of genetic risk information and type of disease on perceived risk, anticipated affect, and expected consequences of genetic tests. Health Psychol 28(3):307–316.  https://doi.org/10.1037/a0013947 CrossRefGoogle Scholar
  5. 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
  6. 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
  7. 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
  8. Dheensa S, Fenwick A, Shkedi-Rafid S, Crawford G, Lucassen A (2016) Health-care professionals’ responsibility to patients’ relatives in genetic medicine: a systematic review and synthesis of empirical research. Genet Med 18(4):290–301CrossRefGoogle Scholar
  9. Forrest K, Simpson SA, Wilson BJ, van Teijlingen ER, McKee L, Haites N, Matthews E (2003) To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clin Genet 64(4):317–326CrossRefGoogle Scholar
  10. Forrest LE, Delatycki MB, Skene L, Aitken M (2007) Communicating genetic information in families--a review of guidelines and position papers. Eur J Hum Genet 15(6):612–618CrossRefGoogle Scholar
  11. Forrest LE, Burke J, Bacic S, Amor DJ (2008) Increased genetic counseling support improves communication of genetic information in families. Genet Med 10(3):167–172CrossRefGoogle Scholar
  12. 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
  13. 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
  14. Heaton TJ, Chico V (2016) Attitudes towards the sharing of genetic information with at-risk relatives: results of a quantitative survey. Hum Genet 135(1):109–120CrossRefGoogle Scholar
  15. 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
  16. Kwiatkowski F, Laquet C, Dessenne P, Bignon YJ (2015) Informer la famille: émotions et attitudes du consultant en oncogénétique pour risque familial de cancer sein/ovaire ou côlon. Bull Cancer 102(2):162–173.  https://doi.org/10.1016/j.bulcan.2014.09.001 CrossRefGoogle Scholar
  17. 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
  18. Law no.2004–800 dated of 6 August 2004 - art. 4. (2004). Code de la santé publique. L1131-1. JORFGoogle Scholar
  19. Law no.2011–814 dated of 7 July 2011 - art. 2. (2011). Code de la santé publique. L1131-1. JORFGoogle Scholar
  20. 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
  21. 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
  22. 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
  23. Mendes A, Metcalfe A, Paneque M, Sousa L, Clarcke AJ, Sequeiros J (2017) Communication of information about genetic risks: putting families at the center. Fam Process 57:836–846.  https://doi.org/10.1111/famp.12306 CrossRefGoogle Scholar
  24. Michie S, Lester K, Pinto J, Marteau TM (2005) Communicating risk information in genetic counseling: an observation study. Health Educ Behav 32(5):589–598CrossRefGoogle Scholar
  25. Nycum G, Avard D, Knoppers BM (2009) Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information. Eur J Hum Genet 17(7):872–880CrossRefPubMedCentralGoogle Scholar
  26. Parker M, Lucassen A (2003) Concern for families and individuals in clinical genetics. J Med Ethics 29(2):70–73CrossRefPubMedCentralGoogle Scholar
  27. Suthers GK, Armstrong J, McCormack J, Trott D (2006) Letting the family know: balancing ethics and effectiveness when notifying relatives about genetic testing for a familial disorder. J Med Genet 43(8):665–670CrossRefGoogle Scholar
  28. 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

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  • Cécile Zordan
    • 1
    Email author
  • 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
  1. 1.Service de Génétique Médicale, Bâtiment Ecole de Sages-Femmes, Groupe Hospitalier PellegrinCHU de BordeauxBordeaux CedexFrance
  2. 2.Service de Génétique MédicaleCHU de ToulouseToulouseFrance
  3. 3.Service de Génétique MédicaleCHRU de MontpellierMontpellierFrance
  4. 4.Département de Diagnostic MoléculaireSynlab GeneticsLausanneSwitzerland
  5. 5.Unité de Soutien Méthodologique à la Recherche Clinique et Epidémiologique, Service d’Information MédicaleCHU de BordeauxBordeauxFrance
  6. 6.Service de Génétique CliniqueCHU de RennesRennesFrance
  7. 7.Service de Génétique OncologiqueCRLCC Paul StraussStrasbourgFrance
  8. 8.Inserm U1211Université de BordeauxBordeauxFrance

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