TY - JOUR
T1 - Conducting science in disasters
T2 - Recommendations from the NIEHS working group for special IRB considerations in the review of disaster related research
AU - Packenham, Joan P.
AU - Rosselli, Richard T.
AU - Ramsey, Steve K.
AU - Taylor, Holly A.
AU - Fothergill, Alice
AU - Slutsman, Julia
AU - Miller, Aubrey
N1 - Funding Information:
This research was supported by the Intramural Research Program and the Office of the Director of the National Institute of Environmental Health Sciences, National Institutes of Health.
Publisher Copyright:
© 2017, Public Health Services, US Dept of Health and Human Services. All rights reserved.
PY - 2017/9
Y1 - 2017/9
N2 - Research involving human subjects after public health emergencies and disasters may pose ethical challenges. These challenges may include concerns about the vulnerability of prospective disaster research participants, increased research burden among disaster survivors approached by multiple research teams, and potentially reduced standards in the ethical review of research by institutional review boards (IRBs) due to the rush to enter the disaster field. The NIEHS Best Practices Working Group for Special IRB Considerations in the Review of Disaster Related Research was formed to identify and address ethical and regulatory challenges associated with the review of disaster research. The working group consists of a diverse collection of disaster research stakeholders across a broad spectrum of disciplines. The working group convened in July 2016 to identify recommendations that are instrumental in preparing IRBs to review protocols related to public health emergencies and disasters. The meeting included formative didactic presentations and facilitated breakout discussions using disaster-related case studies. Major thematic elements from these discussions were collected and documented into 15 working group recommendations, summarized in this article, that address topics such as IRB disaster preparedness activities, informed consent, vulnerable populations, confidentiality, participant burden, disaster research response integration and training, IRB roles/responsibilities, community engagement, and dissemination of disaster research results.
AB - Research involving human subjects after public health emergencies and disasters may pose ethical challenges. These challenges may include concerns about the vulnerability of prospective disaster research participants, increased research burden among disaster survivors approached by multiple research teams, and potentially reduced standards in the ethical review of research by institutional review boards (IRBs) due to the rush to enter the disaster field. The NIEHS Best Practices Working Group for Special IRB Considerations in the Review of Disaster Related Research was formed to identify and address ethical and regulatory challenges associated with the review of disaster research. The working group consists of a diverse collection of disaster research stakeholders across a broad spectrum of disciplines. The working group convened in July 2016 to identify recommendations that are instrumental in preparing IRBs to review protocols related to public health emergencies and disasters. The meeting included formative didactic presentations and facilitated breakout discussions using disaster-related case studies. Major thematic elements from these discussions were collected and documented into 15 working group recommendations, summarized in this article, that address topics such as IRB disaster preparedness activities, informed consent, vulnerable populations, confidentiality, participant burden, disaster research response integration and training, IRB roles/responsibilities, community engagement, and dissemination of disaster research results.
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U2 - 10.1289/EHP2378
DO - 10.1289/EHP2378
M3 - Review article
C2 - 28949918
AN - SCOPUS:85032167348
SN - 0091-6765
VL - 125
JO - Environmental health perspectives
JF - Environmental health perspectives
IS - 9
M1 - 094503
ER -