30 November- 1 December 2017, Bangkok www.gfbr.global Satellite Meeting: Ethics of research with refugee and migrant populations 30 November- 1 December 2017, Bangkok

The GFBR Funded by Bill & Melinda Gates Foundation, UK Medical Research Council, US National Institutes of Health, and Wellcome Seeks to bring voices and perspectives of low- and middle-income countries (LMIC) to the fore in discussions on emerging ethical issues in research Multi-layered approach, involving: researchers, clinicians, IRB/REC members, regional policy-makers, and global thought leaders Strong emphasis on developing networks and collaborations for participants, and learning across borders

The topic Protection of refugee and migrant health requires evidence-informed national, regional and global migration health policies and practices. There are significant ethical challenges when conducting research with refugee and migrant populations as a result of the diverse forms of vulnerability they may experience (issues of stigma and discrimination, safety, access to services, exclusion and compromised relationships with authority) as well as cultural and language barriers. The meeting aimed to bring different socio-cultural and disciplinary perspectives together to identify and discuss key ethical considerations to stimulate an agenda to improve research practice and health outcomes for migrant and refugee populations.

Meeting objectives To address the following questions: What are the main ethical challenges for research with various migrant subpopulations who are particularly vulnerable, marginalised or at risk of harm? Is the way research is done fit for purpose and ‘ethical’ with these populations? What is it that makes research with these populations different? What is needed to improve research ethics in these populations and how best can the need be addressed (including the development of appropriate and targeted ethical guidance)? How can we rethink some of the current processes related to research ethics (e.g. IRB review, training of field workers and community participation) to ensure that research with mobile populations is carried out in an ethical manner and promotes rigorous research and robust findings?

Participants - 42 participants - 24 countries - Perspectives from policy-making; public health; researchers; international organisations; bioethics; funders. Collaboration and best practice sharing across countries and contexts.  

Case studies Questions relating to the ethics of research with labour migrants and trafficked persons Overview of the ethics in trafficking research: study on trafficking, exploitation and abuse in the Mekong (STEAM) Nicola Pocock, Malaysia Ethics of qualitative research: labour exploitation, trafficking and migrant health: multi-country findings on the health risks and consequences of migrant and trafficked workers, Vanesa Vaca, Argentina

Case studies Questions relating to the ethics of research with refugees and undocumented migrants Beyond do no harm- a journey towards ethical research practice with refugee women and communities Linda Bartolomei, Australia ‘Hidden spaces’ and health for all: ethical challenges in researching migration and urban health in Johannesburg, South Africa, Jo Vearey, South Africa Health research on refugee populations in Lebanon: whose agenda and the role of national institutions Iman Nuwayhid, Lebanon

Case studies Questions relating to the ethics of research with migrants facing multiple vulnerabilities Child labour among Syrian refugees in Lebanon: research challenges and ethics concerning a ‘triply vulnerable’ community Rima Habib, Lebanon Ethical issues associated with research in humanitarian settings- the case of an integrated intervention to improve mental health and reduce intimate partner violence among Congolese women in Nyarugusu Camp, Tanzania Samuel Likindikoki, Tanzania

Case studies IRB issues and supporting researchers Tak province community advisory board (T-CAB), a community engagement initiative on the Thai-Myanmar border Napat Khirikkoekong, Thailand Community advisory boards as local IRBs: prioritising community protection in research on displacement and migration Court Robinson, USA The case for an independent Institutional Review Board for vulnerable populations: a proposed model for independent cross-institutional ethics review in the Malaysian context Veena Pillai, Malaysia Beyond ethics approval: learning lessons and supporting researchers Donal P. O’Mathuna, Ireland

Key points Issues and challenges in conducting research with migrant and refugee communities: Reciprocity, ‘benefit sharing’, remuneration (why are there different concerns to paying non migrant populations?) and how are these implemented with mobile populations? Necessity of research- does it have to be this population and why? Advocacy role of researchers Working with NGOs/advocates and maintaining rigour in research Working alongside governments; impact on access to communities, impartiality and ability to report Perceptions and framing of vulnerability impacting on how research is conducted

Key points Issues and challenges in research practice : Capacity, training and physical and emotional safety of researchers Appropriateness of existing standardised data collection methods; could they be adapted to better suit the context in which they are being used? Availability of a repository for ethical guidance and tools Informed consent Unaccompanied minors Participatory methodology Power dynamics and expectation of benefit Institutional Review Boards (IRBs) How locally relevant are they if they do not speak for community? Who represents the communities in decisions on ethics? How rapidly can IRBs respond?

Key points- IRBs and involving the community Looking at potential ‘alternatives’ to traditional IRBs in particular for research with communities not covered by a country’s law and for non–university research which is not subject to independent ethical review The role of community based ethics committees as opposed to formal ones; how would they provide the oversight, guidance and responsibility formal IRBs should be taking? Capacity building for IRBs to better respond to humanitarian situations; potential scale up of cross-country or regional IRB collaboration to expedite process and share expertise How to better involve local communities in ethics process and ensure it is iterative and locally relevant.  

Conclusions Case studies focused on different geographical areas, contexts and communities yet common ethical challenges and themes were evident across presentations and discussions. Challenges arise from establishing the role of the researchers and their relationship with communities, international and non-governmental organisation as well as governments and the dynamics resulting from these relationships when conducting and disseminating research. There is scope to improve research practice through working with researchers and IRBs to provide guidance, protocols and facilitate cross-country training and learning.

Potential activities to take forward Development of standardised tools (e.g. questionnaires, protocols and guidance) appropriate for the context but which can also be easily accessed and used in other settings  Training of IRBs to better support research with migrant and refugee populations - particularly in country. Setting up systems which would allow IRBs from different countries to speak and share tools in order to expedite the process Development of accessible repositories for common guidelines and protocols etc. Develop case studies as educational/training material to facilitate training of researchers and IRBs working in this area