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

• DOI: 10.1007/s10689-017-9970-4
• Publication Date: 2017-03-14T04:38:02Z
• Authors: Benjamin Derbez; Antoine de Pauw; Dominique Stoppa-...; Sandrine de Montg...
• Keywords: 0301 basic medicine; [SHS.SOCIO]Humanities and Social Sciences/Sociology; Communication; Genetic Counseling; Professional Practice; [SHS.ANTHRO-SE]Humanities and Social Sciences/Social Anthropology and ethnology; Medical Oncology; Truth Disclosure; [SHS]Humanities and Social Sciences; 3. Good health; 03 medical and health sciences; Neoplasms; Surveys and Questionnaires; Humans; Family; Genetic Predisposition to Disease; France

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.