Institutional Review Boards: Why Do We Need Them?

By Janis Prince Inniss

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.

Comments

[Kat Bouziane]

I feel that releasing private information about a child even in the name of sociological research in undoubtedly wrong. As far as Humphrey goes, I dont think him acting as lookout in a mens bathroom is all that unethical but when he went to the subject's homes and attained their personal information, that was out of line.

[Bianca Caputo]

I agree. I feel that releasing a child information is completely unethical and you are taking a way a childrens privacy rights and The rights from their families. No information should be allowed to be released unless there was permission. As far as Humphreys goes i feel that the case study was uneithical as well. He was doing a research under false pretense. They were unaware and being tricked. Although what they were doing was unethical as well in public bathrooms. When Humphreys went to there homes and stalked there personal information that was completely wrong and is unacceptable.

[Ellen]

With Humphrey, I don't think that he ever went into someone's home. What he actually did (looking up their license plates) was bad; I don't condone what he did, but I just wanted to clarify that. I can also understand why he did it- anonymously observing these men is really the only way to get a fair, unbiased sample. If he were to do a survey not all people would respond and some might not respond honestly. Also, can you honestly tell me that you've never people watched before? Maybe not in a public restroom notorious for furtive gay sex, but the principle is similar. I think that if he hadn't endeavored to investigate their home life the study wouldn't have been that bad. Like I said, I don't approve of what he did, but there are two sides to every dime. I guess that's why these ethics things are so tricky.

[Anonymous]

I agree. Releasing private information about a child in sociological research is unethical. Even if you’re trying to help others understand how to treat the same condition, it is not your right to give out personal details about a child. If the child gave you permission to do so, then that is another story. However, I highly doubt many people would want the details of their abuse as a child released to the entire world. Humphrey’s case was also unethical. The subjects in his experiment had no idea that he was conducting research on them. To make matters worse, he took it upon himself to go as far as stalking their personal lives by going to their homes, which he found with the help of an accomplice. I don’t think it’s right to violate someone’s privacy without them knowing about it and without their consent of permission.

[Anonymous]

I do not think it is ethical to get such personal information without the consent of the child. I understand that research is difficult when scientists must jump through hoops to get information, but everyone has a right to privacy. I know there are many laws about releasing someone else's personal information, but it can, and does, sometimes fall to the wrong people. That is when things really get out of hand.

[Lori]

Releasing that child's information would indeed be unethical; consent should definitely be obtained. Ethics build trust between sociologists and volunteers is crucial to participation in studies that help us to learn about one another. It's very important to not slip up in the gray areas of ethics.

[Allison]

Releasing a child's name and information is without a doubt unethical. It seems to me that the IRBs are a great check on sociological research to keep it from becoming as unethical as the syphilis study or Laud Humphrey's sex study.