What is the global health bioethics network?
The Global Health Bioethics Network is a collaboration between the five Wellcome Trust Major Overseas Programmes (MOPs) in Kenya, Thailand-Laos, South Africa, Vietnam, and Malawi and the Ethox Centre at the University of Oxford. Funded through a Wellcome Trust Strategic Award, the Network aims to: promote and support ethical reflection within MOPs; carry out ethics research across the MOPs; and improve the capacity of the MOPs to identify and address the ethical issues in their own research. To achieve these aims, the Network carries out a range of capacity-building activities which include: hosting an annual Summer School; providing annual capacity-building bursaries to researchers (Ethics Fellows) across the MOPs; providing education, training and mentorship to Ethics Fellows and other MOP staff; supporting MOP directors and other scientists in identifying and addressing the ethical aspects of their own research; supporting funding applications; and providing collaborative on-line ethics resources to promote cross-MOP discussion. In addition to its capacity building activities, the Network also conducts a number of important research projects into practical ethical issues relevant to the scientific and community engagement activities of the MOPs.
What was the focus on the summer school?
The ‘summer’ school was held in the depths of the Malawian winter in the week Malawi celebrated 50 years of independence. Among the celebrations was a space for reflection about the challenges and opportunities the next 50 years will bring the country. The summer school which brought together an impressively wide range of perspectives, professions and disciplines through a series of presentations, discussion panels and fish bowls also offered a space for reflection on the theory, practice and ethics of community engagement across the different contexts. Key questions that emerged through the discussions, included:
- What are the goals of community engagement and whose agendas do they serve?
- What is the interplay or overlap between approaches fostering public engagement and those aiming to take forward community engagement?
- How can we define and deepen “appropriate” community and public participation across institutional practice and throughout research cycles?
- How can we ensure marginalised and hard to reach groups are not excluded in community engagement activities?
- How can promising and inspiring practices be shared across different MOPs and different contexts?
Given the recent launch of a sister network Research in Gender and Ethics in Health Systems – RinGs – I was particularly interested to learn from debates at the summer school about the interface between gender and ethics:
The interplay of gender and generation within households and communities
Rodrick Sambakunsi’s bursary project focused on social messaging and HIV in Malawi. He aims to use social network approaches to trace the production of knowledge on HIV and explore the ways in which relationships between close and loose knit social networks shape (re)productions of knowledge. Sampling participants through science café’s, counsellor interactions and community mobilising events his initial findings highlight how gender, age and class shape who attends which events and how messages are shared. Lindsey Reynolds and Miliswa Magongo’s bursary project will use historically grounded ethnographic research to explore community perceptions of research within KwaZulu Natal and the role of gender, generation and hierarchy in shaping views points on what constitutes just ethical research. The interplay between gender, generation and cultural perspectives will also be explored in Claudia Turner’s bursary which will examine household and community decision making processes s and behaviours with respect to the care of poorly neonates in Cambodia. Claudia explained that globally neonatal mortality makes up 44% of deaths in children under 5 years but little is known about decision making processes in the first weeks of a baby’s life.
Benefits & payments through the lens of gendered household dynamics
The role of benefits in research also highlighted the role of gender and power within households. Maureen Njue’s bursary explored community perspectives on benefits and payments in coastal Kenya. She found that cash benefits were valued but had the potential to cause conflicts within families and in husband-wife dynamics, particularly when cash payments were made to the mother. Vicki Marsh also explained how in Kenya some participants felt that payments had the potential to undermine traditional gendered family values, although this was hotly contested and debated within the Kenyan community. Dorcas Kamuya explained how gender and power also shape consent processes in the household and how these are negotiated through ongoing interactions with fieldworkers.
Deconstructing communities – what are the challenges of representation?
Participants discussed the challenges and utility of trying to define fluid and dynamic communities. The complexity and fluidity of contexts and communities was beautifully illustrated by Khin Maung Lwin and Phaik Yeong Cheah who described the process of community engagement in the Shoklo Malaria Research Unit in Mae Sot on the porous Thai- Myanmar border area. Here with Decha Tangseefa they argue that the notion of community is shaped by space – whether people reside in refugee camps or border villages; subjectivities – including the role of collective and individual based memories and the realities of legal status, educational background and type of work. Gender, generation and ethnicity overlay experiences of individual and communities making processes of community engagement and representativeness enormously challenging. Khin and colleagues have discussed the processes and challenges of establishing a community advisory board to represent community interests in Biomed ethics. CAB members speak Karen/Burmese live on either side of the border, are aged between 26-60 years old, are mainly male and include NGOs, casino workers and housewives.
Challenges and questions as we move forward…
There needs to be an ongoing critical reflection on the role of community engagement and whose interests are served and taken forward at different levels – with households, ‘communities’, research centres in the south and north, governments and donors. Given the fluidity of communities, how can different engagement activities that best represent or speak for diverse community interests be established? How can we deepen community engagement processes to include marginalised or had to reach groups? Sassy Molyneux pointed out that processes of informed consent and community engagement interact with complex power relationships within households and within communities. This poses a dilemma to the extent to which community engagement and informed consent interactions will intensify or offer opportunities to renegotiate gender and power relations, raising questions about the extent to which researchers – and front line field workers – should be attempting to engage with and/or change asymmetrical power relations?
The literature on social justice provides useful framing for some of these dilemmas. We need to think though and address ethical issues in research simultaneously at micro (e.g. informed consent and individual benefits) and macro levels (addressing structural inequalities and poverty). This means ensuring that our research and community engagement processes enhance, rather than undermine the rights and livelihoods of different women, men, girls and boys.
Blog by Sally Theobald, Liverpool School of Tropical Medicine
Originally posted on e-MOPs (Ethics & Engagement across the Wellcome Trust Major Overseas Programmes) on 15 July 2014