title: Supporting disclosure of genetic information to family members: professional practice and timelines in cancer genetics.
abstract: Disclosure of genetic information within families is one of the longstanding questions under scrutiny in the field of genetics. Most of the probands entrusted with family disclosure succeed in this task, but there are still many problematic cases where it proves difficult. How can professionals help probands disclose this information? What levers can they activate to foster the diffusion of genetic information within families? In the context of a new legal framework concerning this question in France, this paper offers a comprehensive view of the process of genetic counselling in a cancer genetics department. Based on an ethnographic study, it focuses on the interactions between professionals and probands during each step of the testing procedures in order to identify key times when the issue can be addressed. The results show that the question of family disclosure needs to be addressed before, during and after the test. Greater awareness of this continuum among professionals could help them foster family disclosure by supporting the probands at each stage of the testing procedure.
authors.affiliation: Institut de Recherche Interdisciplinaire sur les enjeux Sociaux (IRIS), UMR 8156 CNRS - 997 Inserm - EHESS - UP 13, 190 avenue de France, Paris Cedex 13, 75244, France.
authors.forename: Benjamin
authors.initials: B
authors.lastname: Derbez
authors.affiliation: Service de Génétique Oncologique, Institut Curie, Paris, France.
authors.forename: Antoine
authors.initials: A
authors.lastname: de Pauw
authors.affiliation: Service de Génétique Oncologique, Institut Curie, Paris, France.|INSERM U830, Paris, France.|Université Paris Descartes, Paris, France.
authors.forename: Dominique
authors.initials: D
authors.lastname: Stoppa-Lyonnet
authors.affiliation: Institut de Recherche Interdisciplinaire sur les enjeux Sociaux (IRIS), UMR 8156 CNRS - 997 Inserm - EHESS - UP 13, 190 avenue de France, Paris Cedex 13, 75244, France. sandrine.demontgolfier@u-pec.fr.|Université Paris Est Créteil (UPEC), Créteil, France. sandrine.demontgolfier@u-pec.fr.
authors.forename: Sandrine
authors.initials: S
authors.lastname: de Montgolfier
mesh_terms: D003142:Communication; D005190:Family; D005602:France; D005817:Genetic Counseling / Q000379:methods*; D020022:Genetic Predisposition to Disease; D006801:Humans; D008495:Medical Oncology / Q000379:methods; D009369:Neoplasms / Q000235:genetics; D011364:Professional Practice; D011795:Surveys and Questionnaires; D014342:Truth Disclosure
keywords: At-risk relatives; Ethnographical study; Family communication; Genetic counseling; Genetic results