Abstract
Support for the enrolment of adolescents in research has been constrained by uncertainties in parental involvement, and the lack of clarity in the ethical and legal frameworks. We conducted a scoping review to examine articles that explored the opinion of scholars on the question of adolescent consent and conditions for parental waivers in research in sub-Saharan Africa (SSA). Guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) tool, we searched electronic databases (PubMed, EMBASSE, EBSCOHOST) and also reviewed the references of articles identified for additional relevant literature. We included full text English articles focusing on adolescent consent and parental waivers in SSA that were published between 2004 and 2020. We excluded studies focusing on healthcare, theses, and reviews. We reviewed a total of 21 publications from South Africa (n=12), Kenya (n=4) and Botswana, Malawi, Nigeria, Uganda and Zimbabwe (n=1 each). We identified four broad thematic issues: the current position regarding parental waivers and self-consent; parental involvement in the consent process; the role of community approval or consent when adolescent self-consent approaches were used; and complexities and ambiguities in legal requirements and ethical guidelines on adolescent consent. Our findings show inconsistencies and ambiguities in the existing legal and ethical frameworks within and across different countries, and underscore the need for consistent and clearer guidance on parental waivers and adolescent self-consent. Harmonization of the legal and ethical frameworks taking into account varying contexts is critically important to ensure research on adolescents in SSA meets adolescents' specific unmet needs.
Highlights
Adolescents are a vulnerable group that merit special protection under the law and in international ethical guidelines when they are eligible to be enrolled as research participants
Parental consent and adolescent assent are used as a standard mechanism to protect minor adolescents in research‐related decision‐making processes
Guidelines issued by the Council for International Organisations of Medical Sciences (2016) try to address this by allowing for a waiver of parental consent and grant adolescent self‐consent where the risk level is minimal, and where special protections are put in place to ensure the protection of the minor's best interest
Summary
Adolescents are a vulnerable group that merit special protection under the law and in international ethical guidelines when they are eligible to be enrolled as research participants. Concerns include failure to recognize children's capacities and accord children due respect as persons in their own right, risks of disclosing sensitive information to the parents, and potential conflicts between protecting and violating adolescents' autonomy.. Guidelines issued by the Council for International Organisations of Medical Sciences (2016) try to address this by allowing for a waiver of parental consent and grant adolescent self‐consent where the risk level is minimal, and where special protections are put in place to ensure the protection of the minor's best interest.. The guidelines are interpreted differently in different places, and uncertainties remain over how to ensure waivers of parental consent and adolescent self‐consent can be applied consistently
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