Abstract
Adolescents in low and middle-income countries (LMICs) have a high prevalence of HIV, therefore, it is important that they are included in HIV research. However, ethical challenges regarding consent can hinder adolescent research participation. We examined examples from the Prevention and Treatment Through a Comprehensive Care Continuum for HIV-affected Adolescents in Resource Constrained Settings (PATC3H) research consortium, which investigates adolescent HIV prevention and treatment in seven LMICs: Brazil, Kenya, Mozambique, Nigeria, South Africa, Uganda, and Zambia. PATC3H researchers were asked to identify ethical and practical challenges of adolescent consent to research participation in these countries. We also did a scoping review of strategies that could improve adolescent participation in LMIC HIV studies. Examples from PATC3H research highlighted many ethical challenges that affect adolescent participation, including inconsistent or absent consent guidance, guidelines that fail to account for the full array of adolescents' lives, and variation in how ethical review committees assess adolescent studies. Our scoping review identified three consent-related strategies to expand adolescent inclusion: waiving parental consent requirements, allowing adolescents to independently consent, and implementing surrogate decision making. Our analyses suggest that these strategies should be further explored and incorporated into ethical and legal research guidance to increase adolescent inclusion in LMIC HIV research.
| Original language | English (US) |
|---|---|
| Pages (from-to) | e844-e852 |
| Journal | The Lancet HIV |
| Volume | 7 |
| Issue number | 12 |
| DOIs | |
| State | Published - Dec 2020 |
Funding
The comments and views outlined in our Review do not necessarily represent the views of the Eunice Kennedy Shriver National Institute of Child Health and Human Development. PK declares grants from National Institutes for Health and US Centers for Disease Control, outside the submitted work. All other authors declare no competing interests. This work was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (UG3HD096926, UG3HD096875, UG3HD096915, UG3HD096929, UG3HD096906, UG3HD096914, UG3HD096908, UG3HD096920) with additional funding from the Office of Behavioral and Social Sciences Research, National Institute on Minority Health and Health Disparities, and National Institute of Allergy and Infectious Diseases (1K24AI143471). DFC was supported by a training grant from the National Institute of Mental Health (K99/R00MH110343). Our analysis used data from two sources: a multi-national research consortium and a scoping review. The Prevention and Treatment Through a Comprehensive Care Continuum for HIV-affected Adolescents in Resource Constrained Settings (PATC3H) consortium is supported by the Eunice Kennedy Shriver National Institute of Child Health and Development, the Office of Behavioral and Social Science Research, and the National Institute on Minority Health and Health Disparities at the US National Institutes of Health. The purpose of the PATC3H consortium is to produce scientific evidence that improves HIV prevention efforts and informs treatment for adolescents (aged 10–24 years) from LMICs. 23 The teams use various individual, family, community, and structural interventions to improve HIV outcomes. Research studies associated with the consortium are ongoing in Brazil, Kenya, Mozambique, Nigeria, South Africa, Uganda, and Zambia. A core bioethics working group with representatives from study teams in five (of seven) study countries (Brazil, Kenya, Nigeria, South Africa, and Uganda) was assembled to improve understanding of the ethical challenges associated with including adolescents in HIV research in their respective settings. Monthly group discussions with core members of the working group and email correspondence with PATC3H investigators from all study sites were used to document the ethical challenges seen by PATC3H investigators or field staff. We also reviewed and summarised the ethical and legal frameworks for the inclusion of adolescents in research in each of the seven PATC3H countries with a focus on adolescent informed consent to research participation by comparing the legislation or national ethics guidance documents.
ASJC Scopus subject areas
- Epidemiology
- Immunology
- Infectious Diseases
- Virology
