The need for high quality and timely disaster research has been a topic of great discussion over the past several years. Recent high profile incidents have exposed gaps in knowledge about the health impacts of disasters or the benefits of specific interventions—such was the case with the 2010 Gulf Oil Spill and recent events associated with lead-contaminated drinking water in Flint, Michigan, and the evolving health crisis related to Zika virus disease. Our inability to perform timely research to inform the community about health and safety risks or address specific concerns further heightens anxiety and distrust. Since nearly all disasters, whether natural or man-made, have an environmental health component, it is critical that specialized research tools and trained researchers be readily available to evaluate complex exposures and health effects, especially for vulnerable sub-populations such as the elderly, children, pregnant women, and those with socioeconomic and environmental disparities. In response, the National Institute of Environmental Health Science has initiated a Disaster Research Response Program to create new tools, protocols, networks of researchers, training exercises, and outreach involving diverse groups of stakeholders to help overcome the challenges of disaster research and to improve our ability to collect vital information to reduce the adverse health impacts and improve future preparedness.
Previous studies of hurricane preparedness have generally used indirect measures to ascertain household preparedness, including time intervals between preparation and hurricane landfall and past evacuation. This study sought to directly measure hurricane preparedness by asking residents of a high-risk coastal North Carolina county to report whether their household had an evacuation plan and a disaster supply kit with at least 3 days of food and water for each family member and pet as recommended by the American Red Cross. The survey was conducted six weeks prior to the start of the 2007 Atlantic hurricane season. Past hurricane experience increased the likelihood of a household having a disaster supply kit. However, living in multi-unit housing or a mobile home significantly decreased the likelihood of having a disaster supply kit. Past hurricane experience, past evacuation experience and anticipated evacuation under a mandatory evacuation order were important factors related to a household having an evacuation plan. Residence in a designated flood zone, demographic characteristics of the household, pet ownership, and perceived risk were not significantly related to preparedness. Public health and emergency management officials should work together to determine effective interventions that can improve personal preparedness based on factors other than personal hurricane experience.
Summary: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. https://doi.org/10.1289/EHP2378
Purpose of Review Disasters are becoming more common and challenge national and global resiliency and response efforts. As a result, government agencies have increased interest in disaster research to understand their environmental impact and health-related consequences. With the research field greatly expanding, Institutional Review Boards (IRBs) are being asked to review research protocols aimed at assessing health risks, exposures, and outcomes from disaster survivors. Few IRBs have experience reviewing disaster research protocols. This article describes approaches for IRB preparedness in reviewing disaster research. Recent Findings From a human research protections perspective, primary attention has focused on vulnerability of individuals and/or populations affected by a disaster who may serve as research participants [3, 4]. From our review of the current literature, there is a lack of best practices and/or guidance for IRBs in the review of disaster research protocols. Summary The growth of the disaster research field has brought more attention to potential ethical concerns of disaster research studies. Disaster survivors, responders, and those that assist in cleanup and remedial efforts may be left with significant unmet needs and long-term physical and emotional challenges as a result of their experiences. It is important for IRBs and investigators to collaboratively address how best to protect the welfare of individuals and communities affected by a disaster. A new approach is needed to systematically consider the various factors relevant to an assessment of human research protection issues following disasters.
After Hurricane Harvey, researchers, media, and public health agencies collected data in Houston, Texas, to assess potential health effects and inform the public. To limit redundancy and ensure sampling coverage of impacted areas, research and practice partners used disaster research response (DR2) resources and relied on partnerships formed during a 2015 DR2 workshop in Houston. Improved coordination after the disaster can improve the effectiveness and efficiency of DR2 and enable the use of data to improve recovery and preparedness for future disasters.
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