Participatory Research and ethical review processes
PR approaches set high ethical ideals for research practitioners. Arguably, PR makes it possible to actualize the three ethical imperatives of social research – respect for persons, beneficence and justice – through the additional dimensions of representation, accountability, social responsiveness, agency and reflexivity (see ‘PAR’s Inherent Ethics’). Some commentators have concluded, therefore, that Research Ethics Committees (RECs) should look to participatory research for best ethical practice.1 However, as currently constituted, the organizational expectations of institutional ethics review boards in the UK can be problematic for PR practitioners. From the PR perspective, RECs can be seen as:
- Constructing a ‘one size fits all’ model of research, in which aims, methods and outcomes are known before the research commences.
- Viewing ethics as static, ‘ours’, non-negotiable, non-relational.
- Espousing a hegemonic ‘ethics’, designed to protect from ‘harm’, but which can also serve to disempower and obstruct ‘good’ practice.
As noted elsewhere (see, e.g. 'Inherent Ethics'), PR work tends to unfold in collaboration with those involved. Researchers are responsive to the needs and requirements of participants (not just their own agendas). For these reasons, developing ethics iteratively can be the only valid way to ensure appropriate responses to emerging situations. The researcher’s reflexivity and accountability to participants takes precedence over institutional demands. Particular problems have been noted in regard to harmonising the structured expectations of RECs regarding the obtaining of informed consent and the more fluid and democratic way in which PR work develops. It has also been noted that RECs may not be equipped to take account of the ethical perspectives of research subjects, which are of central concern to PR work.
How then should researchers respond to the disparity between authentic PAR and the structured requirements of institutional RECs? Martin (2007) suggests that that there are three basic ways for researcher to proceed:
- Ignore institutional ethical review procedures.
- Accede to the demands of ethical review procedures and dilute participatory processes.
- Try to navigate a middle ground.
derived from Martin D (2007) ‘Bureaucratization of Ethics:
Institutional Review Boards and Participatory Research’ ACME 6, 3
For most researchers the first is not a practicable option. It is also likely that the second will be seen as undesirable; however, some degree of compromise may be necessary to ensure that work can proceed, which implies the third option. PR researchers need to engage with RECs in order to develop understanding and to find procedures that will work. In the meantime researchers need to develop tactics and strategies for working within the existing structures. Understanding RECs’ perspectives, constraints and the nature of assurances that they require is vital if cases are to be presented in the most expedient way. Sharing REC experiences with other practitioners is likely to be of assistance to all concerned.
The ongoing and emergent nature of PR implies a need for phased ethical review. However, this may prove difficult if ethical review boards do not accept phased review as an option, or if they accept it in principle, but are unable to respond in a timely way (thus compromising the PR research process).
The following case study illustrates the ‘chicken and egg’ situation that can arise in attempting to seek permission for the early ‘scoping’ stage of PR work.
Who Should Be the ‘Moral Guardians’ of Participatory Research?
Young People and the Problematic Use of Alcohol
- Street crime – community safety issue
- Young people – a health issue
- Strong reasons why young people should drink less
- Young people have been exposed to many messages around alcohol
- If you ask them, they know to ‘just say no’
Issue Defined within Traditional Paradigm: Young people are a problem, drink is a problem, and young people who drink are a problem (?!)
Issue Defined within a model of empowerment:
- Young people are an important part of the solution
- Re-defining the problem
- The Children’s Society: ‘provides help and understanding for those forgotten children who are unable to find the support they need anywhere else’.
e.g Homeless young people / runaways
- What do they think about alcohol?
- What steps should we take to do research on this topic?
If we wanted to research this issue from a young person’s perspective, what would be the most effective way of going about it. In other words, rather than doing research which is on or about young people and alcohol, we wanted to develop a research strategy which is with and for young people.
- How should we phrase questions, to get meaningful answers?
- What strategies could we use to engage young people?
- How could we make good use of young people’s experiences?
- How could we develop research in ways which they would benefit?
We had funding from an NHS source to develop a research plan which could feed into a funding application. Our funders needed to ensure that the project complied with NHS Ethics and Governance, and so I was required to seek an opinion.
CT: ‘As each of the individual research projects is participatory in nature, it is essential that those who will be subjects of the research are enabled to have some influence on how the research is designed. So each project will go through a consultation process with the public. ’
ETHICS: I would need to have the specifics of your intentions for the work you will be undertaking with members of the public/patients and there [sic] representatives to be able to seek an ethical opinion. I would need a two page outline of that work in order to gain an ethical opinion.
Ethical Approval or Not?
We are working in collaboration with [A well-known national children’s charity] in the North West to define some research around the issue of young people and problematic use of alcohol. Rather than have only 'top down' perspectives on this issue, we want to allow those who are the focus of the research to provide some input in how we frame the research. The Children's Society have agreed to engage some young people from one of their projects – the point of contact will be through the project workers. All young people in the project will be invited to take part in the consultation, and if they choose to take part, they can talk to my research assistant either on a one-to-one basis or as part of a group. The research assistant is experienced in research with young people and will be asking them for their advice on what methodologies might work and they will also be asked to think about how we might frame research questions. The duration of the consultation will be for as long as the young people remain interested.
As I have stressed, we are in the very early stages of defining projects so it is hard to write two sides of A4 about what we are doing. I appreciate that should we be successful in obtaining funding for the research, we will need to have ethical approval. At this stage, however, it would be more helpful to have some indication in principle about whether consultation about research design needs ethical approval.
If you still feel that you need more information, then it might be better for me to have a conversation with whoever is in a position to say whether ethical approval is required, or not.
The ethics committee will not be in position to provide an opinion without the type of description for each project you have described below. We are not trying to be difficult but would need to ensure compliance with the PCTs requirements around governance. It has been my experience that qualitative research of this type can be clearly defined even in its early stages.
If you speak to the ethics committee directly they will probably be able to advise you. However, we provide the research governance function for the 10 PCTs and would not be able to judge the risks to clients/ patients on the information you have provided to date.
And then (from the Chair of the REC)….
What Professor Truman is proposing appears to be consultation with service users to develop research questions and methodologies. NRES encourages researchers to work with users and user groups in developing research, and this does not need REC review.
Dear Carol, (sic)
Please find response from the chair of the ethics committee. Based on this opinion I do not think it is not necessary to submit the other outlines, providing there is no ethical issues with the work you are to carry out.
Good Luck With this
(Example provided by Carole Truman)
1. E.g., Manzo and Brightbill, 2007