Lived experience of French professionals practising genetic testing in oncology, a qualitative study

Abstract

Background: Over 25000 oncogenetic consultations are held every year in France by oncogeneticists and genetic counsellors. These consultations allow the assessment individual risk of hereditary cancer and provide surveillance guidelines to individuals presenting a deleterious genetic mutation. This research aims to investigate three dimensions of lived experience of oncogenetic professionals and patients: doctor-patient relationship (practical dimension), social sharing of emotions (emotional dimension), social and professional representations (knowledge dimension). Methods: We collected data from a qualitative study based on 27 semi-structured interviews with oncogeneticists (9) and genetic counsellors (18). Data were analysed using both thematic analysis and interpretative phenomenological analysis. Findings: Three keyelements have been identified as structuring practises and doctor-patients relationship in oncogenetics: providing reliable genetic testing, being able to convey clear and understandable information, and providing tailored care to patients at higher risk of developing cancer. Despite an obvious inequality of knowledge that characterize doctor-patient relationships, genetic counselling aims to promote shared decision making and respect the individual and family’s experience of each patient in order to provide tailored care. Social and emotional skills are developed by professionals over the course of their career and considered as necessary to insure their efficiency. However, this communication model seems to be at risk because of complex technological innovations and a major increase in the number consultations. Discussion: This research allowed us to explore the evolving context of oncogenetics, where professionals experience tensions between worries over ethical issues and enthusiasm over technological innovations.