Shooting a moving target. Researching autism genes: An interview study with professionals

BackgroundGiven the wide variety of the phenotype, the uncertain genetic origins and the discussions surrounding the status of autism itself, genetic research on autism genes generates specific ethical questions that are not completely analogous to the ethical issues of genetic research in general.MethodIn order to map ethical issues surrounding research on autism genes, as experienced by professionals in the field of autism, we interviewed 15 Belgian professionals.ResultsWe found that respondents believed that the heterogeneity of the autism phenotype affects the ethics of research on several levels. It affects issues regarding who to include in research on autism genes, regarding what the aim is of such studies, and how the research is done.ConclusionsAlthough genetic research on autism genes is proliferating, a systematic ethical reflection and protocol is missing. With this study we have shown that autism professionals in Belgium express both skepticism and hope with regard to genetic research and raise important points with regard to the effect that the complexity of autism has on research aims and methodology.