PARENTAL PERSPECTIVES ON INCIDENTAL FINDINGS IN PEDIATRIC RESEARCH: THE MISSING VOICE IN THE DEBATE

Abstract

The use of whole genome sequencing (WGS) in paediatric research complexifies the debates around the communication of incidental findings (IF) to the research participants. The voice of research participants is lacking from the debate on what type of IF should or could be communicated to the participants in paediatric research. A qualitative inquiry was undertaken and eleven parents having a child who have been diagnosed with a paediatric cancer were interviewed in order to better understand their points of view and expectations regarding the communication of IF. The parents interviewed in this exploratory expressed their desire to be informed of all types of DF. This preference goes against the current expert consensus on the clinical utility criterion, widely accepted as one of the basic criteria in the decision to communicate (or not) a DF. The results of this study call for further reflection on the communication of DF, taking into consideration the opinion of experts, but also the experience of parents, in the context of the structural limitations of the health system and research infrastructure.