Article Text
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.