Lisa Schwartz, the Arnold L. Johnson Chair in Healthcare Ethics, and a team from CHEPA who are members of the Humanitarian Health Ethics (HHE) research group, shared knowledge drawn from two major studies: “Aid when there is nothing left to offer.” A study of ethics & palliative care during international humanitarian action,” and “Perceptions of research during the 2014-15 Ebola (EVD) Outbreak” and also conducted interactive workshops with front-line aid workers and representatives of global aid organizations on September 26 and 27 at a conference in Geneva, Switzerland, that addressed the ethics of conducting healthcare research during humanitarian crises. The conference was co-sponsored by HHE research group and the Geneva Centre for education and research in Humanitarian Action (CERAH).
The Ebola study, conducted in Sierra Leone, Liberia and Guinea and which was funded by Elrha’s UK-based Research for Health in Humanitarian Crises (R2HC) Programme, had Schwartz; former post-doctoral fellow Elysée Nouvet, and other researchers visit places affected by the Ebola virus, where they interviewed aid workers; toured Ebola treatment facilities; trained local research students and conducted a workshop on the ethics of socio-anthropological research.
After returning to each country to share findings with local researchers and survivor group members, they shared the results of this research with conference attendees from organizations including the World Health Organization, Médecins Sans Frontières (MSF), and the United Nations High Commission for Refugees, and also held workshops to help front-line staff working in missions sponsored by these organizations deal with issues including:
The complexities of consent in public health emergency contexts
Ethical design for research on high-mortality conditions to which there is no known treatment
Communication within research teams and between research teams, research participants and affected communities
Fairness in international research collaboration
The second part of the workshop drew from the “Aid when there is “nothing left to offer” study.
Sonya de Laat, a HHE post-doctoral fellow working under Schwartz, along with Olive Wahoush of McMaster’s Faculty of Nursing, were part of a panel discussion that included co-leads Ibraheem Abu-Siam from UNHCR-Jordan and Emmanuel Musoni, a psychiatrist from Rwanda, about the power and limitations of small humanitarian acts based on themes emerging from the study. The theme for the panel was laid out by Dr. Paul Bouvier from ICRC-Switzerland through a short presentation of his essay on “small things in dehumanized places.”
On the second day of the conference, participants heard about preliminary findings from the study, including early insights on palliative care and supportive care needs for refugees. At the workshop they were engaged on topics including:
- Moral experiences of providing palliative care in complex humanitarian crisis settings
- Ethical concerns and justifications for the provision of palliative care by international actors
- Patient and local healthcare provider experiences of barriers and supports for palliative care in 4 humanitarian crisis settings: public health emergency (Guinea), acute conflict/refugee setting (Jordan), protracted conflict/refugee setting (Rwanda), and an array of natural disaster settings.
Schwartz said the workshops also provided an opportunity to offer front-line fieldworker and policy-makers encouragement and practical advice to take back to their organizations.
On Sept 28, the day after the Geneva conference, Schwartz presented their research to the World Health Organization’s Board of Directors.
In addition to Schwartz and de Laat, CHEPA members of the HHE research group are Ani Chénier, Research Coordinator on the Ebola study and Rachel Yantzi, Research Coordinator on the Palliative Care study.
More information about the research projects can be found at www.humanitarianhealthethics.net.