Ethically acceptable consent approaches to adolescent research in South Africa
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,...
| Main Authors: | , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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AOSIS
2022-09-01
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| Series: | Southern African Journal of HIV Medicine |
| Subjects: | |
| Online Access: | https://sajhivmed.org.za/index.php/hivmed/article/view/1385 |
| _version_ | 1811259614732222464 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Marian Loveday |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-12T18:33:13Z |
| format | Article |
| id | doaj.art-a8d622cf0aea42d0bf15e1f297657ecc |
| institution | Directory Open Access Journal |
| issn | 1608-9693 2078-6751 |
| language | English |
| last_indexed | 2024-04-12T18:33:13Z |
| publishDate | 2022-09-01 |
| publisher | AOSIS |
| record_format | Article |
| series | Southern African Journal of HIV Medicine |
| spelling | doaj.art-a8d622cf0aea42d0bf15e1f297657ecc2022-12-22T03:21:00ZengAOSISSouthern African Journal of HIV Medicine1608-96932078-67512022-09-01231e1e710.4102/sajhivmed.v23i1.1385806Ethically acceptable consent approaches to adolescent research in South AfricaMarian Loveday0Ameena Goga1Ames Dhai2Melodie Labuschaigne3Theresa Roussouw4Theresa Burgess5Ann Strode6Melissa Wallace7Marc Blockman8Brodie Daniels9Elizabeth Spooner10Linda-Gail Bekker11HIV and other Infectious Diseases Research Unit (HIDRU), South African Medical Research Centre, Durban, South Africa; and, Centre for Health Systems Research and Development, University of the Free State, Bloemfontein, South Africa; and, CAPRISA-MRC HIV-TB Pathogenesis and Treatment Research Unit, University of KwaZulu-Natal, DurbanHIV and other Infectious Diseases Research Unit (HIDRU), South African Medical Research Centre, Durban, South Africa; and, Department Paediatrics, University of Pretoria, PretoriaSchool of Clinical Medicine, Faculty of Health Sciences, University of the Witwatersrand, JohannesburgDepartment of Jurisprudence, School of Law, University of South Africa, PretoriaDepartment of Immunology, University of Pretoria, Pretoria, South Africa; and, UP/SAMRC Research Centre for Maternal, Fetal, Newborn and Child Health Care Strategies, University of Pretoria, PretoriaDivision of Physiotherapy, University of Cape Town, Cape Town, South Africa; and, Centre for Medical Ethics and Law, Stellenbosch University, StellenboschSchool of Law, College of Law and Management Sciences, University of KwaZulu-Natal, Pietermaritzburg, South Africa; and, HIV/AIDS Vaccines Ethics Group, School of Applied Human Sciences, College of Humanities, University of KwaZulu-Natal, PietermaritzburgThe Desmond Tutu HIV Centre, University of Cape Town, Cape TownDivision of Clinical Pharmacology, University of Cape Town, Cape TownHIV and other Infectious Diseases Research Unit (HIDRU), South African Medical Research Centre, DurbanHIV and other Infectious Diseases Research Unit (HIDRU), South African Medical Research Centre, DurbanThe Desmond Tutu HIV Centre, University of Cape Town, Cape TownBackground: 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.https://sajhivmed.org.za/index.php/hivmed/article/view/1385adolescentsparental waiver of consentethicsconflicting legal regulations and statutesresearch exclusion |
| spellingShingle | 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 Ethically acceptable consent approaches to adolescent research in South Africa Southern African Journal of HIV Medicine adolescents parental waiver of consent ethics conflicting legal regulations and statutes research exclusion |
| title | Ethically acceptable consent approaches to adolescent research in South Africa |
| title_full | Ethically acceptable consent approaches to adolescent research in South Africa |
| title_fullStr | Ethically acceptable consent approaches to adolescent research in South Africa |
| title_full_unstemmed | Ethically acceptable consent approaches to adolescent research in South Africa |
| title_short | Ethically acceptable consent approaches to adolescent research in South Africa |
| title_sort | ethically acceptable consent approaches to adolescent research in south africa |
| topic | adolescents parental waiver of consent ethics conflicting legal regulations and statutes research exclusion |
| url | https://sajhivmed.org.za/index.php/hivmed/article/view/1385 |
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