Funders, researchers, institutions, and research ethics committees (RECs) worldwide are struggling to interpret and apply ethical principles to the increasing number of health systems research (HSR) studies being performed globally. Available research ethics guidelines, while relevant to HSR, focus predominantly on traditional forms of health research, including biomedical, social science, and epidemiological research.
But currently, no comprehensive HSR-specific guidelines exist that lay out the relevant ethical issues to consider when conducting HSR projects and provide guidance on how to address them. That HSR-specific guidelines are needed has been recognised by bioethicists and bodies such as the Alliance for Health Policy and Systems Research. Without such guidelines, key ethical issues in HSR studies are likely to be overlooked and (as a result) not addressed, or addressed inappropriately.
A first step to develop HSR-specific ethics guidance
We were recently part of a team funded by the Alliance for Health Policy and Systems Research to perform a scoping review of the HSR ethics literature. We set out to identify a number of factors: the key ethics issues that arise when conducting HSR, with a focus (though not exclusive) on low- and middle-income (LMIC) settings; existing guidance on these ethical issues; and any gaps in the available guidance.
What emerged from the review were a number of ethical issues and a limited amount of guidance within various categories: 1) justice, 2) identifying and balancing risks and benefits, and 3) upholding autonomy.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.