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01-07-2017 | Original Article

Supporting disclosure of genetic information to family members: professional practice and timelines in cancer genetics

Authors: Benjamin Derbez, Antoine de Pauw, Dominique Stoppa-Lyonnet, Sandrine de Montgolfier

Published in: Familial Cancer | Issue 3/2017

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

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The consent forms given to index cases and relatives were different. For the latter, at the time of the investigation, the obligation to inform relatives was not stated in the document.

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Title: Supporting disclosure of genetic information to family members: professional practice and timelines in cancer genetics
Authors: Benjamin Derbez
Antoine de Pauw
Dominique Stoppa-Lyonnet
Sandrine de Montgolfier
Publication date: 01-07-2017
Publisher: Springer Netherlands
Published in: Familial Cancer / Issue 3/2017
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI: https://doi.org/10.1007/s10689-017-9970-4

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