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(p. 206) Involving Parents and Children in Community-Engaged Research: Ethical Considerations 

(p. 206) Involving Parents and Children in Community-Engaged Research: Ethical Considerations
Chapter:
(p. 206) Involving Parents and Children in Community-Engaged Research: Ethical Considerations
Author(s):

Erin Talati Paquette

and Lainie Friedman Ross

DOI:
10.1093/med-psych/9780190647254.003.0012
Page of

date: 18 July 2019

Stakeholder engagement in research is increasingly relied upon for its potential to increase the relevance of research, improve transparency of the research process, and translate evidence into practice. Engaging communities in research provides research teams with unique views into the needs, interests, and skills of public stakeholders including healthy volunteers, advocacy groups, patient groups, and their families and/or caregivers. This chapter considers key ethical considerations for researchers contemplating community-engaged research, including how to think about protection of human subjects and privacy, concerns regarding conflicts of interest and group harms, and compensation in community-engaged research. These concerns are heightened and further complicated in community-engaged pediatric research because of the additional vulnerabilities of children. In the pediatric setting, the scope of child participation, consent, and compensation deserve special attention, with respect to and for the evolving but not yet fully developed moral agency of children.

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