Research in global health emergencies: ethical issues
Emergency preparedness, response, and research
See Chapters 2 and 3 of the full report
Key people and organisations
The role of communities
The leading role in emergency response, particularly in natural disasters, is often taken by affected communities themselves. This has important consequences for the ethical conduct of any research associated with that response – for example in terms of how external parties such as overseas research teams are accountable to those communities.
“After the tsunami struck on 26 December 2004, a call went out in the Maldives – “Whoever can help, please come.” Each volunteer was given an age-appropriate task. Many adults stayed away. Many young people came forward. When a psychosocial counsellor was sent to concentrate on possible problems with young people, she couldn’t find anyone. “They were all working,” she said.”
- UNICEF (2007) The participation of children and young people in emergencies
The response to infectious disease outbreaks tends to be more institution-led and dominated by external responders. However, the central role played by local community health services is increasingly recognised. Some researchers are calling for international responders to relinquish control, and trust community responders to take the lead.
The experiences of research participants
Understanding the experiences of those who have taken part in research during emergencies is essential in order to appreciate where misunderstandings or risks of exploitation might arise. The reason why people take part in health-related research is often the hope of getting better, while some also want to help others. The invitation to take part in research may in practice be an ‘empty choice’ with few if any apparent alternatives. Trust in the system, or in the person seeking consent, is very important in people’s decisions.
In humanitarian crises, it can be very difficult for participants to separate out research and response activities, especially when these are associated with healthcare. It may be unrealistic to expect people to trust in the good intentions of researchers if their basic needs are not being met.
Successful collaborative research
“Key success factors were / are: strong leadership, effective communications & logistics planning, team of African consultants who knew the terrain and cultures/customs, strong community engagement, building and harnessing the survivor network, including a humanitarian approach in addition to clinical research by partnering with World Food Program and other governmental and non-profit organizations.”
- Respondent to our call for evidence
Patient and survivor-led action in Sierra Leone during the 2014-16 Ebola outbreak
During our inquiry we heard about these examples of survivor-led actions:
- Organising improvised theatre and talent competitions in Ebola Treatment Units (ETUs) to help maintain hope among patients (described as “these talented friends”).
- Coaxing fellow patients in ETUs to eat, to improve their chance of recovery.
- Once recovered, volunteering as staff members in ETUs and acting as community mobilisers.
- Acting as advocates for the needs of other survivors.
- People should not be asked to take part in health research when their basic health needs are not being met.
- Research funders should require research teams to include clear partnership plans with relevant service-providers, such as humanitarian organisations and national health departments, when seeking funding for research during emergencies.
Researchers in global health emergencies work in complex, rapidly changing, and often uncoordinated environments. Challenges include:
- the many organisations and lines of accountability involved;
- the rapid turnover of workers and their different motivations;
- the inherent dangers of the emergency setting; and
- the tension between doing research and the immediate emergency response, especially in the face of great need.
Role of technology and surveillance in supporting preparedness
Technological developments play a valuable role in helping to provide information to guide the actions and decisions of all those involved in emergency preparedness, response, and research. These include:
- developing early-warning tools and monitoring systems;
- creating predictive models to help guide the way health services are provided; and
- developing and improving ‘near-patient’ diagnostic tests.
These technologies complement the important role of local communities and health services in being alert to the early signs of emergencies, and initiating local action plans.
Key stakeholders in research in global health emergencies