Ethical Issues in Environmental Health Research Related to Public Health Emergencies: Reflections on the GuLF STUDY

Biomedical research can play a vital role in the response to public health emergencies such as natural disasters, disease epidemics, or terrorism (National Biodefense Science Board 2011; Ball 2013; Manuel 2001; Schwartz 2005). Based on lessons learned from the Gulf oil spill, Hurricane Sandy, and other similar disasters, Nicole Lurie (Assistant Secretary for Preparedness and Response), Francis S. Collins [Director of the National Institutes of Health (NIH)], and Thomas R. Frieden (Director of the Centers for Disease Control and Prevention) outlined the need for improved national capabilities to perform critical health research during disasters and other emergencies (Lurie et al. 2013) noting that research conducted during and after a public health emergency can provide critical knowledge that supports recovery efforts and improves capacity to deal with future emergencies. For example, research conducted in response to the Ebola outbreak in West Africa in 2014 has provided public health officials and the general public with additional information about virus transmission, mitigation of health risks, and appropriate measures to protect workers and prevent the spread of disease (IOM 2015b). In addition, the clinical trials conducted during the outbreak may lead to the development of treatments and vaccines (Cox et al. 2014). Observational and clinical research can help identify risk factors that impact the long-term health of people affected by public health emergencies and contribute to community and individual resiliency, susceptibility, or vulnerability. Although timely research of populations affected by public health emergencies has been identified as a priority for disaster preparedness, response, and recovery, many challenges remain, including the need to address a number of important ethical issues prior to the onset of emergencies (IOM 2015a). In this article, we consider some of these ethical issues by drawing on insights gained from the Gulf Long-term Follow-up Study (GuLF STUDY; http://www.niehs.nih. gov/research/atniehs/labs/epi/studies/gulfstudy/). Background on the Gulf Oil Spill On April 20, 2010, an explosion occurred aboard the Deepwater Horizon oil rig, which was located 49 miles off the Louisiana coast. Eleven people died in the explosion and in the subsequent sinking of the rig, which also damaged the oil well and led to the release of nearly 5 million barrels of oil into the Gulf of Mexico––making it the largest maritime spill in U.S. history (National Commission on the BP Deepwater Horizon Oil Spill and Offshore Drilling 2011). Additionally, about 1.84 million gallons of chemical dispersants were used to remediate the spill (Castranova 2011), which affected hundreds of miles of shoreline along the Gulf Coast of the United States between Florida and Louisiana. Cleanup workers used floating booms and skimmers to contain and collect the oil, sorbents to absorb it, and dispersants to break it up. Approximately 150,000 individuals from around the world participated in the cleanup effort, but most were from Louisiana, Mississippi, Alabama, and Florida. Local workers were mainly hired by contractors for British Petroluem (BP), which was the lessee for the Deepwater Horizon oil rig; others were sent by state or federal agencies. The well was capped on July 15, 2010, but cleanup work continued for many months (National Commission on the BP Deepwater Horizon Oil Spill and Offshore Drilling 2011).