Everything is like improvisation: Perspectives on the conduct and ethical oversight of research in post-disaster settings

BackgroundThe current emphasis on post-disaster research has spurred discussions regarding its ethical implications, particularly in low- and middle-income countries (LMICs). In spite of the growing discourse on post-disaster research, little attention has been paid to the perspective of research ethics committee (REC) members and the experience of researchers in those settings.

MethodsFace-to-face and phone interviews were conducted both with human health researchers (n=10) who conducted one or more studies within 24 months of a large-scale natural disaster in a LMIC and with members of RECs who have experience reviewing such studies (n=14). Researchers occupied a range of junior and senior positions, while REC members mostly held senior positions. They worked at academic institutions, non-governmental organisations, for-profits, and governmental boards. They hailed from geographically diverse locations.

Results For both researchers and REC members, the post-disaster setting amplifies the thorny issue of distinguishing between research and practice. Many post-disaster researchers reported having bypassed the research ethics system. Although REC members were sometimes aware of this, most held that it did not occur in their jurisdiction. Researchers justified their decision by emphasizing the lack of time, the unplanned nature of their data collection, and/or the lack of awareness of existing structures. REC members acknowledged the need for procedures to speed up ethics review while maintaining a high level of scrutiny. REC members further cautioned that closer attention should be paid to researchers’ skills, knowledge and professionalism, warning of the potential for a form of “disaster tourism.” Researchers, on the other hand, were skeptical of increased oversight, fearing a loss of flexibility.

Discussion There appears to be a disjuncture between the expectations discussed in the disaster research ethics literature and the practices of post-disaster researchers. This disjuncture is only partially echoed in the concerns raised by REC members. Importantly, there are also points of convergence in the perspectives of researchers and RECs. Together, these points of disjuncture and convergence point to recommendations regarding emerging training initiatives, as well as innovative research ethics oversight strategies, such as pre-review of generic protocols, tiered review, and centralized reviews.