The ethical implications of facilitating the involvement of groups considered ‘vulnerable’ in the development of research

Background: Funders of research are increas¬ingly requiring applicantions for funding to detail how those who are (or are likely to be) affected by the focus of the research have been involved in the development of the proposal and how they will be involved in the research if it is funded. Whilst there are sound ethical reasons as to why this is important it can also raise ethical challenges if such involvement is to be meaning¬ful particularly when those to be involved are viewed as belonging to ‘vulnerable’ groups.

Aims: To explore what ‘involvement’ means in this context and how this may be facilitated when working with groups who may be consid¬ered vulnerable.

Presentation: This session will use the four ethical principles identified by Beauchamp and Childress (2013) (Beneficence, non-maleficence, autonomy and justice) to explore the reasons why involvement in the development of research is important and the ethical consequences of non-involvement. In particular it will be argued that non-involvement is a form of epistemic injustice (Fricker, 2007) that reinforces marginalisation. The utility of the term ‘vulnerable group’ will be critically examined and it will be argued that epistemic injustice is itself a source of vulner¬ability. The presentation will also use personal experience of seeking to promote involvement at all stages of the research process to explore how this can be facilitated in an ethical manner.

Conclusion: Whilst there are ethical chal¬lenges to promoting meaningful involvement of some groups of people in the development of research there are also ethical consequences of non-involvement and hence researchers need to develop ethical strategies to support participa¬tion.