NEXUS Spring Institute

Know your rights with research: A new approach to knowledge exchange with youth Johnson, Joy; Shoveller, Jean; Chabot, Cathy; Read, Jennifer


This paper presents some of the ethical issues encountered during a participatory action research (PAR) study with youth and the challenges and opportunities the project created for knowledge exchange (KE). The study aimed to develop ways to meaningfully engage young people in research and have them co-develop research examining youth sexual health. Members of the Youth Sexual Health Team employed and trained four youth aged 18-22 years old as Youth Co-Researchers (YCRs). Together, we examined how existing policies regarding the conduct of academic research can affect young people’s participation in research and its implications for knowledge exchange. Our study revealed that many youth do not understand their rights as research participants. To address this gap, we created the “Know Your Rights with Research” card. This handout explains in youth-friendly language the basic and fundamental rights that youth need to be aware of in order to make informed decisions about their participation in research. The “Know Your Rights with Research” handout is proving to be a valuable exchange tool in our research. We use it during the informed consent process to help explain the meaning and operationalization of informed consent, confidentiality, and anonymity, among other issues. We suggest that the “Know Your Rights with Research” handout is not solely about conducting research in an ethical manner but is also providing new opportunities for knowledge exchange with young people – a population where conventional KE strategies are not always successful.

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