Title. How ethical is ethical research? Recruiting marginalized, vulnerable groups into health services research.
Aim. This paper is a discussion of how tensions in research ethics guidelines can have an impact on the recruitment of marginalized, vulnerable groups of people into health services research.
Background. Research ethics guidelines in the United Kingdom (UK) predominantly reflect requirements for clinical trials and medical research but apply to all types of research conducted in the National Health Service. Guidelines emphasize the process of informed consent to protect individuals’ autonomy and rights, and avoid harm to vulnerable people. This focus, however, can result in the exclusion of and discrimination against marginalized groups at a time when user involvement in research and health service developments is increasingly emphasized in policy.
Method. This paper is based on a critical reflection on tensions observed in current research ethics guidelines in the UK. These tensions became apparent following recruitment of nine postnatal drug-using women to a qualitative phase of an evaluation in 2005 of a specialist health visitor service.
Findings. The main ethical tensions identified concerned the sampling and recruitment of marginalized groups, which can affect the validity and reliability of research findings. Consideration needs to be given to sampling and accessing such groups and assessing the capacity of individuals to give informed consent. This is to avoid coercion and exploitation of vulnerable individuals and groups in research, increase validity and reliability, and avoid pre-emptive exclusion of such groups in the research design.
Conclusion. Ethical judgements and decisions about research can be contradictory and be influenced by competing paradigms. Use of the concept of ‘responsible advocacy’, with due consideration to the principles of autonomy, beneficence, non-maleficence and justice, is recommended.