How to Return Research Results to Patients and Families? The Children’s Oncology Group Experience (C232)

Based on the progressive development of a thoughtful ethical framework, it is recognized and codified in law that respect for the research participant must be paramount. This means that their informed choices must provide clear limits to what they are subjected to and their confidentiality must be guarded. The Children’s Oncology Group and other clinical trial organizations interpret the ideal of “respect for participants” to mandate that research results be provided to participants when the study is complete and results are available. This is an important responsibility of health care providers (HCPs). There are numerous potential benefits to offering return of research results to study participants. These benefits include: the recognition of participants’ contribution to research, the ability to disseminate results in a more nuanced and accurate way, providing information that might be useful to future decision making, and increasing broader public understanding of the social benefits of research. This session will use exemplars from Children’s Oncology Group studies to illustrate and examine: how information about research result summaries can be communicated to participants and families, the general content of a return of results summary, and how summaries of research results can be obtained by participants and families and incorporated into their continuum of care in various health care settings such as survivorship clinics. This session will also enhance nursing practice by reviewing how to communicate results and educate pediatric oncology HCPs and patients/families to support and promote the return of research results.