Best Practices for Research Involving Children and Adolescents in Genetic, Pharmaceutical, Longitudinal and Palliative Care Research
Why Best Practices?
Advances in child and adolescent research are improving our understanding of the many factors affecting the health and development of children and adolescents. A major challenge is to ensure that these advances are achieved in a way that maximizes benefits, minimizes potential harm, and respects both parental authority and the developing autonomy of minors.
Most of the ethical norms governing research involving human subjects, however, do not take a clear position on child and adolescent research. They usually indicate, in a general manner, that children and adolescents should be included in research, but fail to provide further guidance.
The increasing demand to include children and adolescents in research areas such as Genomics, Pharmaceutical Science and Longitudinal Studies, requires new and updated ethical guidance that can keep pace with the possibilities of emerging technology. Consequently, the new best practices document seeks to address the particular ethical and legal issues raised by current and emerging trends in child and adolescent health research, and proposes practical solutions for researchers and research ethics boards.
These best practices focus on 10 key elements of research involving children and adolescents and the ethical considerations involved in each:
- Inclusion
- Consent to research
- Assent of the child or adolescent
- Dissent of the child or adolescent
- Waiver of consent
- Risks and benefits
- Privacy and confidentiality
- Return of research results
- Payment in research
- Composition of Research Ethics Boards
Your Feedback is Needed
Investigators, health practitioners involved in research, research administrators, research coordinators, REB members, parent and patient representatives are invited to attend one of the confirmed sessions hosted across Canada to learn more about the best practices and to provide comments on the text. Comments may also be submitted to bestpractices-children@cihr-irsc.gc.ca. The draft document may be downloaded at PediaGen.
