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.