Professor Angus Dawson1, Dr Neha Faruqui1
1Sydney Health Ethics, University of Sydney, Australia
This paper reports and discusses the findings from a critical interpretative review of over thirty ethics guidelines that included discussion of health research with young people (defined, here, as those under 18 with capacity). Most were general research ethics guidelines as only a very few were produced specifically covering this age cohort. Our findings will form the basis of further work outlining the elements that we suggest should form the basis of future guidelines. First, terms used for this age cohort need to be stable. They are currently diverse and have different implications (e.g. ‘adolescents’, ‘young people’, ‘teenagers’ or just ‘children’). Second, discussion of consent was often confused. For example, there was often a lack of clarity about where consent by a young person was considered acceptable, the concept and place of assent relative to consent, the role of parents, clinicians, researchers etc. Third, welfare considerations were usually discussed in terms of ‘best interests’, often without definition of this term or clear allocation of who is considered the relevant decision maker (e.g. parent, researcher, research ethics committee etc). More generally, there was often a confusion of legal and ethical considerations, a tendency to interpret ethics as a series of general rules, as well as an apparent lack of trust in young people to make their own decisions about research participation. Future research ethics guidelines for young people should be built through engagement and focus on helping participants, researchers and research ethics committees reach responsive, context-sensitive and justified decisions.
Angus is Professor of Bioethics at the University of Sydney and has research interests in public health ethics, research ethics and methodology in bioethics.