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Familial disclosure by genetic healthcare professionals: a useful but sparingly used legal provision in France
  1. Benjamin Derbez1,2,
  2. Antoine de Pauw3,
  3. Dominique Stoppa-Lyonnet3,4,
  4. Frédéric Galactéros5,6,
  5. Sandrine de Montgolfier6,7
  1. 1Faculte de Medecine et des sciences de la sante, Universite de Bretagne Occidentale Faculte de Medecine et des Sciences de la Sante de Brest, Brest, France
  2. 2LABERS – Laboratoire d'études et de recherches sociologiques, Brest, France
  3. 3Génétique oncologique, Institut Curie, Paris, France
  4. 4Faculte de Medecine, Universite Paris Descartes, Paris, France
  5. 5UMGGR, Hopital Henri Mondor, Creteil, France
  6. 6Faculte de Medecine, Universite Paris-Est Creteil Val de Marne, Creteil, France
  7. 7Institut de recherche interdiscipplinaire sur les enjeux sociaux, Paris, France
  1. Correspondence to Dr Benjamin Derbez, Universite de Bretagne Occidentale Faculte de Medecine et des Sciences de la Sante de Brest, Brest 29238, France; benjamin.derbez{at}univ-brest.fr

Abstract

Familial disclosure of genetic information is an important, long-standing ethical issue that still gives rise to much debate. In France, recent legislation has created an innovative and unprecedented procedure that allows healthcare professionals (HCPs), under certain conditions, to disclose relevant information to relatives of a person carrying a deleterious genetic mutation. This article will analyse how HCPs in two medical genetics clinics have reacted to these new legal provisions and show how their reticence to inform the patients’ relatives on their behalf leads them to use this option sparingly.

  • family communication
  • genetics
  • breast cancer
  • hemochromatosis
  • law
  • bioethics
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Footnotes

  • Contributors BD, sociologist, is the initial writer and coordinator of the paper. SdM, bioethicist, was the supervisor of the article. DS-L and FG, geneticists, and AdP, genetic counsellor, contributed to revise and improve the paper and to validate biomedical information.

  • Funding Institut National du Cancer, 52, avenue André Morizet 92513 Boulogne Billancourt Cedex.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The protocol of the study was authorised by Paris-Descartes University’s Institutional Review Board (CERES): IRB number 20150600001072.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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