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

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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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Notes

  1. 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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Acknowledgements

We thank all the members of the genetics department of the Institut Curie (Paris hospital) directed by Professor D. Stoppa-Lyonnet for letting us conduct this survey.

Funding

The authors thank the Cancéropole – Ile-de-France and INCa for funding the research project ‘Family disclosure in human genetics: implications and implementation of family disclosure in familial genetic disorders 2013–2016’ (Grant 2013−130).

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Authors and Affiliations

  1. 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

    Benjamin Derbez & Sandrine de Montgolfier

  2. Université Paris Est Créteil (UPEC), Créteil, France

    Sandrine de Montgolfier

  3. Service de Génétique Oncologique, Institut Curie, Paris, France

    Antoine de Pauw & Dominique Stoppa-Lyonnet

  4. INSERM U830, Paris, France

    Dominique Stoppa-Lyonnet

  5. Université Paris Descartes, Paris, France

    Dominique Stoppa-Lyonnet

Authors
  1. Benjamin Derbez
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  2. Antoine de Pauw
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  3. Dominique Stoppa-Lyonnet
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  4. Sandrine de Montgolfier
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Corresponding author

Correspondence to Sandrine de Montgolfier.

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Derbez, B., de Pauw, A., Stoppa-Lyonnet, D. et al. Supporting disclosure of genetic information to family members: professional practice and timelines in cancer genetics. Familial Cancer 16, 447–457 (2017). https://doi.org/10.1007/s10689-017-9970-4

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