Grant: Fellowship - PA: Regional Partnership Program - Newfoundland & Labrador

This research will examine and analyze key stakeholder perspectives on the ethical inclusion of adolescents in Canadian health research and provide recommendations for renewed policy direction. Depending on the province, adolescents up to 18 years of age may require parental permission to participate in research. Across research disciplines, there have been calls to allow young people to make decisions for themselves, yet it is unclear how these appeals have been taken up and how to best support the inclusion of adolescents in health research while attending to ethical concerns. The central questions guiding this proposal are: 1) What are the current policies and laws on the inclusion of adolescents in health research in Canada? 2) How do key stakeholders understand and uptake existing legal and ethical guidelines on the inclusion of adolescents in health research? and 3) What changes, if any, do key stakeholders recommend to policy and practice guidelines concerning the inclusion of adolescents in health research? By exploring the perspectives of researchers and decision-makers as well as legal and ethical frameworks, this approach to research shifts the focus away from the traditional research subject and instead researches up, and will integrate a poststructural analysis. There are three core elements: 1) a policy scan of legal and ethical guidelines concerning the participation of adolescents in Canadian health research; 2) a scoping review of recent Canadian health literature involving adolescents and young adults, and 3) thirty-four in-depth interviews with health researchers, policy-makers from across Canada, and decision-makers from research ethics boards. This study will identify gaps in perspectives and practice among key stakeholders and will provide new opportunities to reconsider the risks and benefits of including adolescents in Canadian health research.