Ethically acceptable consent approaches to adolescent research in South Africa

Marian Loveday; Ameena Goga; Ames Dhai; Melodie Labuschaigne; Theresa Roussouw; Theresa Burgess; Ann Strode; Melissa Wallace; Marc Blockman; Brodie Daniels; Elizabeth Spooner; Linda-Gail Bekker

doi:10.4102/sajhivmed.v23i1.1385

Ethically acceptable consent approaches to adolescent research in South Africa

South Afr J HIV Med. 2022 Sep 5;23(1):1385. doi: 10.4102/sajhivmed.v23i1.1385. eCollection 2022.

Authors

Marian Loveday^{1

2

3}, Ameena Goga^{1

4}, Ames Dhai⁵, Melodie Labuschaigne⁶, Theresa Roussouw^{7

8}, Theresa Burgess^{9

10}, Ann Strode^{11

12}, Melissa Wallace¹³, Marc Blockman¹⁴, Brodie Daniels¹, Elizabeth Spooner¹, Linda-Gail Bekker¹³

Affiliations

¹ HIV and other Infectious Diseases Research Unit (HIDRU), South African Medical Research Centre, Durban, South Africa.
² Centre for Health Systems Research and Development, University of the Free State, Bloemfontein, South Africa.
³ CAPRISA-MRC HIV-TB Pathogenesis and Treatment Research Unit, University of KwaZulu-Natal, Durban, South Africa.
⁴ Department Paediatrics, University of Pretoria, Pretoria, South Africa.
⁵ School of Clinical Medicine, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.
⁶ Department of Jurisprudence, School of Law, University of South Africa, Pretoria, South Africa.
⁷ Department of Immunology, University of Pretoria, Pretoria, South Africa.
⁸ UP/SAMRC Research Centre for Maternal, Fetal, Newborn and Child Health Care Strategies, University of Pretoria, Pretoria, South Africa.
⁹ Division of Physiotherapy, University of Cape Town, Cape Town, South Africa.
¹⁰ Centre for Medical Ethics and Law, Stellenbosch University, Stellenbosch, South Africa.
¹¹ School of Law, College of Law and Management Sciences, University of KwaZulu-Natal, Pietermaritzburg, South Africa.
¹² HIV/AIDS Vaccines Ethics Group, School of Applied Human Sciences, College of Humanities, University of KwaZulu-Natal, Pietermaritzburg, South Africa.
¹³ The Desmond Tutu HIV Centre, University of Cape Town, Cape Town, South Africa.
¹⁴ Division of Clinical Pharmacology, University of Cape Town, Cape Town, South Africa.

Abstract

Background: Adolescents are a unique population with significant unmet health needs. They are often excluded from research that may benefit them as they are perceived as vulnerable and needing protection from research participation. For Research Ethics Committees, conflicting positions in statutes, regulations and ethical guidelines about who provides informed consent for adolescent involvement in health research can be a significant barrier to approving adolescent research. For researchers, the requirement for parental/guardian proxy consent or prolonged approval processes may potentially result in the exclusion of those adolescents most vulnerable and at risk, particularly if issues such as gender-based violence, gender identity, sexuality and sexual practices are in question.

Objectives: To describe the challenges to adolescent research and suggest strategies to address these.

Method: We consider the legal and ethical framework in South Africa regarding the consenting age for adolescents in research, outline the challenges and, using examples of best practices, suggest strategies to address the current conundrum.

Results: We suggest three principles to guide Research Ethics Committees on their approach to reviewing health research involving adolescents. Strategies to develop ethically acceptable approaches to adolescent research and consent processes are described, which include community involvement. We elaborate on examples of nuanced approaches to adolescent research.

Conclusion: The inclusion of adolescents in research is critical in informing appropriate and effective health services for this vulnerable population, whilst providing an opportunity to link them into care and services where relevant.

Keywords: adolescents; conflicting legal regulations and statutes; ethics; parental waiver of consent; research exclusion.

Publication types

Review