Laws (Dec 2022)
Adolescent Capacity to Consent to Participate in Research: A Review and Analysis Informed by Law, Human Rights, Ethics, and Developmental Science
Abstract
Contemporary societies pose major challenges for adolescents and it is essential to conduct research with them to understand their experiences, identify their needs, and discover solutions to major social problems. Social science, humanities and health-related research into violence, technology, and climate change exemplify vital research endeavours requiring adolescent participation to advance Sustainable Development Goals and enhance individual lived experience and societal flourishing for current and future generations. International and national research ethics guidelines emphasise the necessity to conduct research to advance societal benefit, while upholding principles of autonomy and justice, and promoting participant welfare and avoiding harm. International human rights instruments promote adolescents’ freedom of expression and right to participate in matters affecting them. The rapid generation of robust research findings is essential, but it remains commonly assumed that adolescents cannot provide their own consent to participate in research studies, and the belief that parental consent is required can impede and impair the entire research process. Debate continues about the proper interpretation of legal principles and research ethics guidelines about who may provide consent. Continuing confusion about who must provide consent, and why, impedes the protection of adolescents’ interests and the advancement of society. This article adds to knowledge by providing a multidisciplinary overview of evidence from developmental science, social science, law, human rights, and bioethics about decision-making capacity and entitlements in the context of research participation, and an updated evidence-based analysis of adolescents’ capacity to provide their own consent to participate in social, humanities and health-related research. A conservative application of knowledge from these domains both individually and collectively supports conclusions that adolescents aged 16 are able to provide their own consent to participate in research, and no legal or ethical principle requires the provision of parental consent on their behalf. Practical considerations may support parental involvement in conversations about participation, and some types of research require trauma-informed approaches, but adolescents are developmentally, legally and ethically entitled to make their own decision about whether or not to participate.
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