Grant: Travel Awards - Institute Community Support

For decades, the pediatric oncology context has maintained a strong clinical research tradition. Research applications of next generation sequencing (NGS) are among the latest innovations that promise vast improvements in the nature and quality of pediatric cancer care. Yet ethical challenges persist in the disclosure of genetic information in this context, particularly the management of incidental findings. The information-generating capacities of NGS, and its widening use in pediatric cancer research, demand an anticipatory and multidisciplinary discussion on the ethics of disclosing incidental findings. The aim of this study is therefore to explore the perceptions and attitudes of investigators concerning the return of incidental findings in the pediatric oncology research context. Sixteen in-depth, qualitative interviews were conducted with leading investigators in pediatric oncology from across Canada. Results from our study reveal at least four contextual themes underlying the ethics of when, and how IFs could be disclosed to pediatric research participants and their families: clinical significance of the result, respect for individual, scope of professional responsibilities, and implications for the healthcare/research system.