Ethical Considerations of Conducting Research among Children and Young People Affected by HIV: A View from an Ethics Review Board

Abstract

The contents of this book rely upon primary data collected among human subjects, and are therefore subject to national regulations requiring prior approval from an ethical review committee (or Institutional Review Board, in the USA). Seeking ethical approval for research in the sensitive and politically charged field of HIV research can be a trying process for a research team. The design and conduct of research fieldwork frequently gives rise to difficult ethical dilemmas. Children and families affected by HIV may be vulnerable to harmful outcomes including stigma, discrimination, abuse and exploitation; and may have impaired access to power and resources. We acknowledge the importance of the input of these vulnerable individuals and families, so that their needs are understood and appropriate services and programs can be developed, ultimately in order to bring quality of life improvements. Yet their vulnerable circumstances demand that a researcher seeking their participation in a data collection activity must exercise special care and take extra precautions to ensure their protection. In this chapter, we highlight some constructive advice for study design and conduct aimed at enhancing the ethical conduct of research among children and families affected by HIV, based upon recurrent themes that we have observed from our experience of conducting ethical reviews. We conclude that it is feasible to conduct ethically sound and high quality research among children and families affected by HIV, and that these values extend far beyond our field of HIV research to researchers in other fields working among vulnerable children and families, including malaria and child survival.