Some IRBs are reviewing many more disaster studies, given the rapid expansion of the field since Hurricane Katrina in 2005.

“It is clear that the field is expanding, especially in the last decade. As the frequency and intensity of disasters increase, there are more scholars doing research, which is good,” says Alice Fothergill, PhD, professor in the department of sociology at the University of Vermont.

However, there is a lack of guidance for IRBs to consider human research protection issues with disaster research, according to a recent paper.1 “It’s a little overwhelming for human subjects boards to know how to respond to the requests and for researchers new to disaster work to know how to work with IRBs,” says Fothergill, one of the authors.

In a previous paper, researchers and practitioners from many disciplines came up with some recommendations for IRB review of disaster research.2 “It was so well-received that we were asked to develop the thinking further,” Fothergill notes.

An ethical issue is that often, researchers enter the field suddenly, without advance preparation. Researchers might decide to conduct the study right there since the disaster poses a unique and valuable research opportunity. “If researchers do not move quickly and get into the field, the data they want to collect may be gone. That urgency poses an additional challenge,” Fothergill observes.

During two decades of disaster research, Fothergill has found most scholars are careful and thoughtful about how they conduct their work. “But there is a lot of debate around the ethics of disaster research,” Fothergill explains. “Debate is healthy for the disaster field, and there are many strong viewpoints.”

One controversy is over whether disaster survivors should be studied (i.e., ask them questions or take medical samples) right after a disaster has happened. “Most disaster researchers are sensitive to this. Most research is not too distressing for the participants,” Fothergill reports.

Participants in social science research often report that talking about the experience with a compassionate researcher was helpful. But Fothergill says other important questions remain:

  • Are there some times when people are too distressed to give informed consent?
  • Should participants be compensated?
  • Do participants understand the role of the researcher, or do they assume the researcher is affiliated with relief agencies or the media?
  • Is disaster research different than other circumstances in which research is conducted on populations under a lot of stress caused by poverty, violence, or homelessness?
  • Do participants have any physical or mental health needs that should be addressed before they participate in the study?  
  • Is there a way to maintain privacy and confidentiality during the data collection, even in shelters?
  • Are some survivors studied by multiple groups of researchers, putting them at risk for too much burden?
  • Do researchers know enough about the local cultural context?

“People who just lost their homes and are in a mass shelter may be taking care of a child with a disability, without medications they need, and don’t speak the language being spoken by officials in the shelter. They may be elderly and disoriented by the rushed evacuation,” Fothergill says.

IRBs must consider the value of the research to advance science and reduce suffering. At the same time, IRBs must consider the potential for harm based on the unique vulnerabilities of disaster survivors in the aftermath. “Education, flexibility, collaboration, and compassion are critical as we move forward,” Fothergill says.

REFERENCES

  1. Packenham JP, Rosselli R, Fothergill A, et al. Institutional review board preparedness for disaster research: A practical approach. Curr Environ Health Rep 2021;8:127-137.
  2. Packenham JP, Rosselli RT, Ramsey SK, et al. Conducting science in disasters: Recommendations from the NIEHS working group for special IRB considerations in the review of disaster related research. Environ Health Perspect 2017;125:094503.