Institutional Review Boards: Why Do We Need Them?
So you’ve been reading about various sociological theories and ideas. And about some sociological studies. But have you given any thought to some of the ethical issues sociologists might face as we conduct research? Have you learned anything about the issues that we face in dealing with human subjects?
Much of the research that I have conducted has involved interviews and other qualitative methods. And I have found that people love to talk when they’re being listened to. Think about it, how many people in your life really listen to you? And pay you to tell your story?
This means that sometimes I learn intimate details about people’s lives. One such example is a study I worked on to identify strategies to improve the mental health care of children in the child welfare system. Our goal with this research project was to identify individual, family, and systems-level factors and circumstances that impact the psychotropic medications and services that children in the child welfare system receive. To conduct the study we used a mixed-methods approach that included analyses of some Medicaid databases and in-depth case studies of children in the child welfare system who received mental health care.
Of course, the Medicaid database had lots of billing information, which is not the kind of information any of us would want displayed publicly if it were ours. The database has the type of services children received, their mental health diagnosis, date of birth, dates and length of service, sex, and race among other variables. Because I was working on the qualitative aspect of the study, I saw none of this raw data; someone else on the research team who was conducting the quantitative analyses and whose computer met extensive university-set security standards was allowed access to the data and would give the results to the rest of the research team.
The case studies included a small sample of children, reviews of their child welfare charts, and interviews with the children and their families, child welfare workers, and other service providers. As we reviewed the charts, we learned very personal details about these children and their families. Because the focus of the study was children in the child welfare system, all of these children had been removed from their homes because of allegations of neglect and/or abuse.
Their charts (oftentimes boxes and boxes of documents pertain to one child because of the length of time they remain in the system) chronicle police reports, child protection investigations, assessments, treatment plans, and home visits by child welfare workers. And of course, during the course of the interviews we learned more about these families –and given our focus on mental health care, we learned about psychotropic medications—exactly what was being taken, for how long, with what results, as well as other mental health care.
What if in this post, I told you about one of the youth in this study? What if I decided to give you a child’s name and told you about the abuse that child suffered and the remedies taken? What if I did that to help you understand how to treat the same condition? Would that be ethical?
Have you heard of Institutional Review Boards (IRBs)? Universities and other research institutions have them to ensure that research is conducted in an ethnical manner. There have been some atrocities committed in the name of research. The syphilis study at Tuskegee Institute began in 1932 and allowed African American men to die from syphilis more than 20 years after researchers knew that there was a cure for this disease; these study participants had been mislead about the true nature of the study. Perhaps you have learned about sociologist Laud Humphreys’ book Tearoom Trade: Impersonal Sex in Public Places. Humphreys 1960s ethnographic research on anonymous sex acts between men in public bathrooms is often noted as unethical because his “subjects” had no idea that he was conducting research as he acted as a lookout for them.
Given that these men were in public spaces, would you argue that Humphreys’ description of their behavior was ethnical? What about the fact that later, in disguise, he went to their homes? How did he know where they lived? He noted license numbers of some of their cars and with the aid of an accomplice (a friend who worked at the Department of Motor Vehicles) learned about their family lives.
Today, research participants are protected by IRBs. Researchers must undergo IRB training and take refresher courses annually. And before we can conduct any research, we must apply to our university IRB. The application includes a description of the study and explains in detail what we want to do with participants. The IRB has to have full knowledge of each proposed study: how many participants will there be, of what ages, how will they be contacted, for how much time will they be involvement, will deception be used, how much they would be paid. Risks and benefits of participant involvement must be detailed and if special populations are involved the stakes are even higher. (Can you think of why prisoners, children, and pregnant women might be considered special populations and subject to additional oversight by review boards?)
With all of this information, the IRB decides whether a study can be implemented as proposed. As you read about sociological studies, think about the ethical considerations that researchers must consider and take to IRBs.