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.

[Michelle]

Children are considered special population because they are defenseless and can be seen as a target to someone if the child says something wrong. Prisoners are special population because they have information that is very secret to them and wish not to expose that part to the world and also because prisoners have issues and can become very violent if personal information is released that they don’t feel comfortable being exposed. Pregnant women are in the special population because they are not one person, they are two people and just how children are special population so is the unborn baby falls under the same category as the children. Children are not smart enough to understand what is going so researchers can take advantage of their knowledge and ask leading questions and will satisfy the researcher hypothesis.

[Janet Leos]

Prisoners, children and pregnant women may be considered special populations because it is a sensitive manner to study, question, or conduct research on individuals who are at high-risk. Prisoners may be dangerous to the researchers, or a danger to themselves, and even though they may be considered criminals they're rights should always be protected. Studying the cases of pregnant women should be handled delicately and with respect. The IRB should especially handle cases delicately when dealing with children, they have already been through a hard time and the IRB should provide them with as much comfort and care as the children need, seeing as the IRB needs the child for the study, not the other way around.

[Deanna Chittum]

Prisoners, children, and pregnant women might be considered special populations due to their circumstances. Children are young and vulnerable. Pregnant women are also more vulnerable than non-pregnant women and, of course, they are with child, and finally, prisoners are more of a danger than an every day citizen. With these circumstances they may be subject to additional oversight by review boards. There is more of a risk in using these participants in a study. Therefore, additional oversight would be helpful in eliminating any possible risks.

[Wendy Adrover]

Prisoners may be considered a special population because they can be convenient research participants. Prisoners are also a special population because their ability to refuse to participate in a study may be compromised. Children may also be considered a special population because their parents or legal guardians are the people that make choices for them. Pregnant women may also be categorized under a special population because a third party (the fetus) is also involved. These special populations may be subject to additional oversight by review boards because of the aforementioned circumstances.

[Nancy moxica]

I would always question myself that why wouldwe ever need those institutional review boards but now I realize they are important because it brings us information we all need to know it is all revolving in our society that people have to be aware of every situation going on around them

[Sarah]

The prisoner is a captive audience when it comes to participating in a survey or field experiment. The children are subject to the parents influences on them as they answser questions. A pregnant woman is responsible for the fetus that she carries so the answer that we find from the fetus is directly responsible from the actions of the mother. All of these studies seem to be one sided and we draw a conclusion from only one part of the answers.

[Estelle Robinson]

Releasing information of people that might undergo additional criticism from the public, such as prisoners, pregnant women, etc, would not be ethical. For one, people might not honestly judge their case and use bias to persuade their views. For example, the IRB would have to take additional measures to make sure that the prisoners' information was not released into the public, as well as children, who are minors and are especially protected under the law. Pregnant women when participating in surveys and case studies, are in fact participating on behalf of themselves and their unborn children, and should therefore receive extra protection.

[Gabriela Almendarez]

Prisoners, children and pregnant women might be considered special populations and therefore subject to additional oversight by review boards because they are what one can consider ‘vulnerable’. Prisoners are in jail for some sort of crime and if a journalist –for example- goes out to the media revealing someone’s name it might put that prisoner’s safety on the line. However they possess the ability to deny taking part of a study. Children are a special population because their choices most likely revolve those of their parents because they are too young to generate their own thoughts on delicate subjects. Pregnant woman are also to be considered a special population because they not only represent themselves but the life inside of them and should therefore be protected.

[sally asgharzadeh]

Dr. Pih,
Releasing any information without consent from that person involved is definitely unethical and i'm glad we have the IRB's for protection. When i think of prisoners, children, and pregnant women and why they are all considered special populations yet they are so different from one another, a few thoughts come to mind. One being that i noticed those people all are people who aren't the " norm" population, meaning they are in a stiuation which needs extra oversight. Maybe they are vulnerable or have special needs. Prisoners have commited a crime, so they are potentional danger to society, they need to have extra privacy and focus placed on them. Maybe they need protection because if they have enemies and their information is released, harm might be done to their family members or people they know. Also maybe they are much more convenient for researchers to use as subjects which brings about more possible risk. Children are not yet adults obviously so their competence to give consent or to not give it is much less. They aren't able to properly think through the consequences of either action. They can be taken advantage of in that sense. Pregnant women are difficult because you can't just consider the mother and child one person. They are two individuals and proper privacy of both is extremely important. Just because the mother is some way does not mean the child has to be placed in the same category. This additional oversight for special populations is needed, beneficial, and important.

[Prudencio Lua]

I personally feel releasing child information is unethical. Prisoners, children and pregnant women are considered special populations; I would have to say they are each individually special in their own way. Children are the future so if they are affected in a certain way it affects our future. Pregnant women have a baby they have to take care of within them, requiring much more attention and care. As for prisoners i don't know how they could be considered a special population. If anything the reason they are considered a special population is because they make up the majority of our population.

[Jose De Guzman]

Prisoners, children and pregnant women may be considered a special population because of how much of them are part of the population. There is a great number of prisoners, children and pregnant women in the United States. They are subject to additional oversight because of the privacy rights. Some of them might not want their information available to others.

[Hilda Correa]

Prisoners, children, and pregnant woman may be considered a special population, because not only are prisoners away from society because of the crime they committed, but there still human beings with rights, for there own protection of there family, and friends to not be exposed for security to their love ones. Now a child may seem very easy to expose but, in reality you they should not because they come from a lot o background that maybe someone else might want to hurt them. Therefore, exposing someone information is not the right thing to do. Unless the person itself, agrees to those terms but for a child under no circumstances should be put out there for people to know about, so its a good thing the we have IRBs.

[Leydi Rivas]

Prisoners, children, and pregnant women would be considered special populations and subject to additional oversight by review boards because of their circumstances and because it would be unethical to release certain information about them that might need personal consent. For example, prisoners have records of their crimes and trials that is too confidential or personal to release to the public. And children, who are under-age, have to have someone consent on their behalf to obtain information; they need additional oversight because of their age and state. For pregnant women they may be considered a special population because, in their case, it's two individuals that are being studied: herself and her child.

[jai kemp]

Its unethical to release or look at the personal information of anybody without personal consent. It is good that we have review boards so that we make sure that everybody is treated fairly. Women prisoners and children may need additional oversight by review board because they are special circumstances. prisoners usually have extensive data on the crimes they commited and if this information was made public it would make the criminal look bad. Kids also need additional oversight because they are miners and might not know what they are consenting to. prgent Women on the other hand need additional oversight to make sure the study is healthy for the baby.

[Hyung Bae Kim]

Dr. Pih

I strongly disagree with the releasing the people's information including the chlidern. As many people pointed out that it is totally unethical. I think that it is bad to committied a crimes, but in the end of the day, humans make mistakes at all the times. But the most important thing is they should learn from their mistake. As that being said, if you release their information which lead this to making them as look as bad guys in the world, those people would never even get to have a second chance for their life, and it is very cruel.

[Amber Santos]

Prisoners, children, and pregnant women be considered special populations and subject to additional oversight by review boards to receive more information that we might not know. On the other hand it is unethical to release information without the persons consent. It is up to them if they want to have this done.

[Samuel Kazungu Muramba]

Truly this is a valuable site.