La communication des résultats de recherche en génétique : réflexion sur le point de vue de parents d'enfants souffrant d'autisme
Genetics studies are becoming increasingly prevalent leading to a growing body of information on disease susceptibility with the potential to improve health care. Many of these results are considered exploratory with no clinical utility. Official guidelines in ethics, advocating a disclosure of global results, also tend increasingly towards the communication of individual results when available and applicable if the research participant choose so. An "ethical imperative" to return research results is increasingly acknowledged in research ethics guidelines. This emerging moral duty raises many questions including the issue of whether and how research participants might receive their individual results. In this study, we explore the perspectives of parents of an autistic child participating in genetic research. It is essential and important to explore their needs and expectations about how they would like to be delivered research results. The purpose of this study is to propose an ethical reflexion on providing individual genetic research results to participants: is there a duty ? a right ? Providing individual genetic research results to participants is a key challenge. We expect to find major challenges in matters of return of result given both the high expectations surrounding genetic research and the vulnerable state of some patients/research participants.
Research results Disclosing Research participants Research ethics Genetics