The VOICE (HIV YOuth Informed Consent & Ethics in Research) project aims to improve consent processes for adolescents and young adults (AYA; age 10 to 24 years old) participating in HIV research in low- and middle-income countries. There are many social, ethical, and legal challenges with obtaining consent for AYA to participate in HIV research, which can often make it difficult to include AYA in studies. Practical solutions to improve consent processes, and guidance to implement those solutions, are needed to increase AYA participation in research. This is particularly important in low- and middle-income countries (LMICs), where AYA face a high burden of HIV morbidity and mortality.
The goal of the VOICE project is to involve key stakeholders in identifying promising strategies for improving consent in ways that can help increase AYA participation in HIV research. VOICE brought together a working group of AYA, HIV and AYA researchers, advocates, bioethicists, policy experts, research ethics committee members, and parents to work towards this goal. We organized a scoping review, launched a global crowdsourcing open call for ideas, established a Working Group, and conducted a consensus-building process comprised of three online surveys and a hybrid consensus summit. Through these activities, we have developed a consensus statement on ways to improve AYA consent processes in LMICs. We also developed an accompanying practical guide for implementing these recommendations, as well as a youth-focused summary to help make our recommendations more accessible for AYA audiences.
Below are links to download copies of the products of the VOICE project. These are free, open access resources that can be used by AYA and allied advocates, HIV researchers focused on LMIC contexts, policy makers in LMICs, research Ethics Committee members, and anyone seeking to improve the experiences of AYA participating in HIV research.
This document presents 25 consensus-based recommendations for ways to improve AYA consent processes in HIV research in LMICs. It also contains a glossary of terms as well as a list of open access resources on the topic of AYA consent.
This document serves as a practical handbook to accompany the consensus statement. The VOICE Practical Guide provides background information on AYA consent processes, open access resources from LMIC contexts, and more detailed explanations of the strategies recommended in the consensus statement, with examples grounded in the existing literature on AYA consent to provide guidance for implementing the recommended strategies.
This document is a youth-focused summary of the VOICE Practical Guide, suitable for audiences age 15 and older.
We would love to hear from you! Please email Suzanne Day at suzanne.day@med.unc.edu for more information about our project.
We gratefully acknowledge the efforts of all members of the VOICE Working Group, contributors to the VOICE Open Call, participants of the consensus survey responses, and reviewers of the VOICE Practical Guide and youth summary. We are especially grateful to our partners, 4YBY (For Youth By Youth) and the Nigerian Institute of Medical Research.
