by Courtney Jarboe, PRIM&R Blog Squad member
PRIM&R is pleased to bring you more blog posts from the PRIM&R Blog Squad. The Blog Squad is composed of four PRIM&R members who are devoted to blogging prior to, during, and after the 2010 Advancing Ethical Research Conference.
As I mentioned in my first blog for Ampersand, I am very interested in ethical issues relating to internet research. This is one area of the 2010 Advancing Ethical Research Conference that I can’t wait to explore. However, there are other topics that I’m curious about as well, and one very important one is research and humanitarian disaster settings and war zones.
With the ongoing events in Haiti—earthquakes and aftershocks, cholera outbreaks, and hurricane Tomas, is there enough scientific importance to warrant research? Would conducting research provide benefits that could outweigh the immediate benefits of humanitarian aid? Could conducting research there result in distractions from the directive to rebuild the Haitian community, as well as their mental and physical health? Even if research is allowed, would you obtain fully informed consent from such a vulnerable population? Finally, would the researchers have the ability to conduct the research without harm or additional liability issues to themselves?
What about the Chilean mining incident? During the crisis, Chris MacDonald, PhD, Professor of Ethics at St. Mary’s University, wrote a blog article on whether it would be ethical to conduct research on the miners during their entrapment. Dr. MacDonald writes:
Doctors are already monitoring (remotely) the men’s health; why not go further and study the men, so that we can learn about the effects of prolonged isolation on the human body and mind? Consent forms could be sent down (and back up) the newly-drilled access tube. Would doing so be ethical? Informed consent is certainly possible, but would it be legit? Do trapped miners count as a “vulnerable population,” in the same sense as prisoners and children and people in mental health institutions?
I’m not sure if research was allowed, but it seems that since the main directive was to rescue the miners, there would not yet be a focus on studying the effects of isolation on the human mind. There are, however, several ethical issues at hand should researchers move forward now. For example, if a researcher wanted to have direct interactions with these men, what measures would have to be in place to protect the men from serious risks of psychological damage (if that is not already occurring)? How could a researcher obtain the miners’ fully informed consent knowing that they’ve been surged with requests from media outlets for interviews, movies, and novels? What should be released in terms of the data (i.e. video and health data) that was gathered during the crisis? And, perhaps most importantly, how could any researcher protect the privacy and confidentiality of the 33 men whose names and general health are already posted all over the internet?
While most of the research I see at my institution is fairly minimal risk, I do see occasional ideas for “after-the-fact” research on environmental disasters or war zones. One of the issues I’ve come across is that of safeguards. What is considered additional versus standard safeguards? For example, is it adequate to provide a data monitoring board and counseling services for participants? Can a researcher get by with conducting survey-based research rather than face-to-face research? Is that as risky, or worse? In addition, while the institutional review board (IRB) is solely charged with protecting the rights and welfare of human participants, who is to safeguard the researcher? What if a researcher is conducting interviews with participants who have experienced devastating catastrophes, or actually is conducting research during these catastrophic events, and there are potential impacts to the health of that researcher?
I’m hoping to take what I learn at AER back to Capella University’s IRB, to provide the IRB members and human research protections program (HRPP) staff with resources, as well as inspiring ideas about some of the ongoing issues with this type of research.
A few years ago I was on staff at the IRB at the University of Alabama at Birmingham. One of the nurses there helped lead a summer camp for children with respiratory disorders. The summer before, there was a lot of smoke at the camp that blew in from brush fires in Florida, south Georgia and south Alabama. The nurse did not do research at the time, but afterwards submitted an expedited review survey study for the parents of the children to try and measure the effects of the smoke pollution while the kids were at camp. If I remember right, she also got permission to access medical records to see if events increased from the previous summer's camp, when the aire was clearer.