Online Program

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

Monday, November 2, 2015

Renaud Boulanger, MSc, Biomedical Ethics Unit, McGill Unviersity, Montreal, QC, Canada
Catherine Tansey, PhD, School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada
Matthew Hunt, PhD, PT, School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada
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.

Learning Areas:

Ethics, professional and legal requirements
Public health or related research

Learning Objectives:
Compare and contrast the experience of researchers working in low-resource settings after a natural disaster with the perceptions of research ethics committee members.

Keyword(s): Ethics, Disasters

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have conducted the interviews with the researchers exploring their experience with post-disaster research that are discussed in this paper. I have also participated in the analysis of the interviews with research ethics committee members. I have been involved in projects related to research ethics in low-resource settings for the past 7 years.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.