The Women Leaders in Conflict and Health (WLCH) Initiative hosted its first seminar at the King Hussein Cancer Centre (KHCC) in Amman on 10th December 2019. It brought together a group of exceptional women and men from a range of organisations, including the King Hussein Foundation (KHF), International Medical Corps Jordan, Royal Health Awareness Society, German Jordanian University, King’s College London, Hacettepe University, University of Cambridge, Imperial College London, and representatives from the Jordanian Ministry of Health. The seminar was moderated by R4HC-MENA Co-Director, Professor Rita Giacaman, whose extensive research experience in complex environments with vulnerable populations enriched the discussions. Speakers included, Shayma’a Alwaheidi, PhD candidate at King’s College London; Dr. Maysa Al-Hussaini, pathologist at KHCC and Chair of the International Review Board (IRB); Dr. Rawan Ibrahim, Assistant Professor at the German Jordanian University; Dr. Aidah Alsaeed, Director of Information and Research Centre at KHF. The diverse experiences of the speakers and attendees – clinicians, academics, programme managers and directors – resulted in a highly constructive discussion on the importance of collaboratively strengthening ethical guidelines of conducting health research with vulnerable populations in complex conflict impacted-environments. The seminar raised two important points: the impact of inequitable relations between Global North and Global South on ethical frameworks; and, how research is influenced by patriarchal relations and gender dynamics particularly in situations of conflicts.
Shayma’a Alwaheidi set the scene for the seminar with a moving personal account of her experiences in Gaza, where she was inspired to undertake research on factors affecting survival among women with breast cancer in Gaza. Shayma’a discussed the impact of inequitable relations between Global North and Global South researchers on conducting health research in complex environments. All speakers and attendees agreed that current guidelines are inadequate for conducting health research with vulnerable populations; they lack flexibility and cultural and contextual appropriateness. Ethics committees are often influenced by a Global North agenda; funding for research is often delivered through institutions in high-income countries who partner with institutions in middle- and low-income settings and, subsequently, research is undertaken in the Global South. As a result, researchers must bridge vastly different expectations and understandings of cultural and contextually appropriate ethics.
Dr Maysa Al-Hussaini, relayed her experiences in Jordan of chairing the KHCC IRB. The KHCC IRB provides an exemplary model; it is composed of a wide range of participants, from both medical and non-medical backgrounds and actively monitors its gender diversity, which is currently predominantly women. In recent years the IRB has reviewed a number of research proposals exploring the needs and experiences of refugees. This experience has strengthened the capacity of IRB members in assessing ethics when conducting research with vulnerable populations. However, this has not come without its challenges: the absence of ethical standards on psychosocial studies; translation and language of research tools; stringent data collection methods that are often not applicable in complex environments; and, no clear guidelines for safeguarding participants.
From an NGO perspective, Dr. Alsaeed stated that many of the challenges remain the same and are exacerbated by donor requirements that do not contextually align.
These challenges raise further important questions around power and leadership dynamics and associated patriarchal and gender relations which compound the north-south inequitable dynamic. There is a growing role of women in leadership in both the medical and social sciences. Furthermore, in complex environments, women and children are the most vulnerable within an already vulnerable population. How does this impact ethics committees in their decision making? Not only do ethics committees lack an awareness of contextually appropriate needs, but they often lack gender balance and are frequently unable to employ a gender lens in their decision-making processes.
Through this insightful discussion, it was concluded that there is a growing urgency to meet the current challenges of implementing appropriate ethical guidelines in complex environments that meet the needs of vulnerable populations, maintain the dignity of participants, and challenge the current status quo driven by a Global North agenda. There was also a clear need for further mixed methods research in this space to inform policymakers in both global North and South
Kristen Meagher
