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The Ethics of Adolescent Inclusion in HIV Research in sub-Saharan Africa

Maru, Mahlet

Background: Adolescents and young adults between the ages of 10 to 24 represent 37% of people living with HIV in sub-Saharan Africa. Despite their increased vulnerability, the adolescent population is often excluded from biomedical and behavioral research. While the importance of involving adolescents in health research is widely recognized, their participation is often complicated by ethical, legal, and practical issues. One critical but understudied area in research ethics is the cognitive capacity of adolescents of different ages to understand and provide informed consent. This paper explores adolescents’ cognitive capacity to understand and provide informed consent using a modified version of the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) in Rakai, Uganda. MacCAT tool is a modified semi-structured interview that assists investigators in assessments of patients' competence to consent to research.

Method: The study used qualitative descriptive analysis drawn from data collected in Rakai, Uganda. Data sources included semi-structured in-depth interviews using the MacCAT-CR with selected study participants (N =14); including adolescents (n=7), and their parents/guardians (n=7).
Results: The findings suggest that adolescents’ level of knowledge and understanding of informed consent did not differ from that of parents/guardians level of understanding. Adolescents also displayed independent decision-making abilities and a high level of competency indicating their ability to self-consent in research.

Conclusion: Taking this perspective will contribute to shaping future research and policy guidelines regarding adolescents’ participation in research in sub-Saharan Africa. More research are needed to further understand and explore methods for ethically involving adolescents in research, especially research related to sexual health and research in low and middle-income countries.

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More About This Work

Academic Units
Sociomedical Sciences
Thesis Advisors
Sommer, Marni
Degree
M.P.H., Mailman School of Public Health, Columbia University
Published Here
April 19, 2021