December 17, 2020

Roles and Relationships: Ethical Considerations Related to Involving Children and Parents in Patient-Oriented Research

In health research, institutional research ethics boards (REBs) ensure that clinical research studies adhere to ethical standards that protect participating research subjects. However, the term “research subject” is limiting and does not encompass the role of patient-partners as key collaborators who are engaged throughout the research process to align research outputs with priorities that are important to patients and families. Within CHILD-BRIGHT, our patient-partners include both children with a brain-based developmental disorder as well as their parents or informal caregivers. In this session we will explore the ethical considerations that apply to the relationship between researcher and patient-partner, as well as what role – if any – REBs can play in facilitating ethical engagement.

Jennifer Johannesen

Elizabeth Stephenson (chair, SickKids Research Ethics Board)
Franco Carnevale (ethicist)
Gillian Backlin (NYAP member)
Thierry Lacaze-Masmonteil (clinical researcher; director of MICYRN)
Antonia Palmer (parent, founder of Neuroblastoma Canada)