Many complex ethics questions arise in the conduct of longitudinal research in low- and - middle income countries (LMICs), particularly in studies that involve children and other potentially vulnerable social groups over long periods of time. Young Lives strives to adhere to agreed ethical standards which emphasise principles of justice, respect and informed consent, and of maximising benefits while avoiding doing harm to the people in our study. Whist there is a well-developed ethics literature on children and youth in social research, less is published on the lessons learned in navigating research ethics in longitudinal studies.
This report outlines some of the main ethics challenges faced by Young Lives as they have tracked the 12,000 children who joined Young Lives 20 years ago, and who are now adolescents and young adults. The authors interviewed long-term members of the international research team (principal investigators, researchers, country directors, programme administrators, and policy, communications and data managers), across five countries (Ethiopia, India, Peru, Vietnam, and the UK). and drew on project documentation, including information from interviews with Young Lives families and fieldworkers’ notes to compile the report.
The report features seven themes: informed consent; safeguarding; research relationships and reciprocity; sensitive questions; maintaining anonymity; using photos and visual images; and IRBs. For each theme, the authors offer key points of learning and illustrative examples from Young Lives experience, in particular highlighting aspects of change over time. By discussing the struggles as well as the successes, the report aims to contribute to the wider community of practice of longitudinal researchers working in LMICs.