My work in research ethics focuses on developing and advocating for respectful, participant-centred processes that honour the dignity and complexity of individual experiences. I try to achieve this through the Inspiring Ethics group I founded, by developing community ethics boards and processes, and via research. For instance, to find out how to research ethically with migrants, I conducted an ethnography of three participatory action research projects with Iranian and Afghan community groups. An academic paper based on my learnings is here. You can also access our co-produced report.

Inspiring Ethics

Inspiring Ethics is a group of researchers who want to reshape ethical relations in community-based research and change the bioethical model of university ethics. We are concerned with university and NHS ethical processes around participatory, cross-cultural, survivor, user-led and international research.

We have mapped out the diverse ethical process issues faced in participatory research. We have invited experts in the field of ethics to speak at our events, broadening our understanding and stimulating discussion on complex ethical issues in research. We organised an arts-based workshop bringing together researchers, community members, and lived experience experts.

Findings on from Research with Sanctuary Seekers

Theme 1: Negotiating diaspora community values and dynamics

LESSON:

Be conscious of the nuances of migrant identities

POSSIBLE RESEARCH ACTIONS:

1. During initial engagement, explicitly and honestly describe identities. 2. Adapt to transnationality, ensuring departed team members can contribute from abroad. 3. Plan around cultural and religious holidays and spread out the research commitment over time. 4. Emphasise opportunities to publish academically and enable participants to draw on university resources.

Theme 2: Collaborating with migrant community organisations

LESSON:

Identify how the structure of collaborating organisations might influence research

POSSIBLE RESEARCH ACTIONS:

1. Establish what resource is to be brought to organisation-communities. 2. Ensure that research builds on implicit knowledge in organisation-communities. 3. Sign an MOU listing mutual commitments. 4. Conduct a series of introductory interviews and attend organisation events before the start of a collaboration.

LESSON:

Challenge internal organisation and community oppressions when appropriate

POSSIBLE RESEARCH ACTIONS:

1. Create PAR spaces independent to the organisation-community. 2. Find a source of legitimacy outside of the organisation hierarchy, for instance in letters of support from established community members. 3. Decide PAR meeting logistics by consensus.

Theme 3: Addressing researcher-participant power dynamics

LESSON:

Offer participants a choice of research approach

POSSIBLE RESEARCH ACTIONS:

1. Run a basic training session on different possible research approaches 2. Begin PAR with a series of one-on-one discussions with each team member, to get to know them and how they wanted their expertise to be recognised.

LESSON:

Proactively facilitate the participation of marginalised people

POSSIBLE RESEARCH ACTIONS:

1. Talk through the meeting agenda with quieter PAR members before meetings. 2. Before the research begins, have a frank discussion with participants about payment.

LESSON:

Ensure that ethical procedures are culturally accessible

POSSIBLE RESEARCH ACTIONS:

1. Recognise, understand, and incorporate community ethical values into ethical procedures. 2. Use creative ways of ensuring iterative consent such as a weekly ethics activity. 3. Provide an introductory ethics training session.

Interview with PAR team member

Milad was part of the participatory action research team at the Iranian Association. We investigated personal development in the Iranian community through questionnaires and focus groups. Milad played a key role in developing the research protocol, facilitating focus groups and analysing data. In this video Milad reflects on his experiences being part of the team. He speaks Persian and there are English subtitles. This echoes how we mixed languages during our team meetings.