When I joined the INIT Lab, one of the first things I was tasked with was completing a series of IRB trainings. Like many others who don’t work in the research field (and had never done so before), I had no idea what the “IRB” was, or what purpose it served. I thought that it was just a set of rules and regulations we must follow to do our research. However, as I worked with the TIDESS group on several projects, I realized that, even after my trainings, I did not fully understand the purpose of the IRB. This may have been because I thought that most of the IRB information is hard to understand for someone who is unfamiliar with the field. The information presented within IRB trainings is verbose, and some of the terminology which is being used is specific to the research field. However, the thing that made understanding the IRB most difficult was my lack of context on what the IRB is, and the reasons it is important to our research. Topics such as privacy and safety are highly emphasized in the IRB trainings, but I could not fully understand the reasonings behind it, as I did not understand why safety/privacy was such a large topic within non-medical research labs such as ours. However, during my time as an undergraduate research assistant in the INIT lab, I have vastly improved my understanding of the IRB and the purpose it serves. In this post, I am going to explain exactly what the IRB is, and how it affects our projects on a large scale.
The IRB, or Institutional Review Board, is an administrative body that was created to protect the rights of participants in research activities. Each institution which is conducting research has their own IRB which reviews all research proposals, and either approves or denies them. Before anyone at an institution like UF can perform any studies/research involving human participants, they must get approval from the IRB. Every IRB is given latitude to interpret the federal regulations and create their own set of procedures. This blog post will cover what I have learned about UF’s IRB. Your own institution may do things similarly, or they may have differences.
The IRB review process begins with a research proposal, where a summary of the planned research is given. There are three categories of review that each proposal will fall into: Full Board, Expedited, or Exempt. An Exempt review means that the proposal will be reviewed by one IRB member, and is used when the proposal is low risk. An example of something that would be considered “Exempt” would be an anonymous survey. Expedited reviews are done on proposals which pose more risk than an exempt proposal (e.g., collecting height and weight data) and require either the chair of the IRB, or an experienced board member designated by the chair, to review. A Full Board review involves the entire IRB panel in the review process and occurs when there is “greater than minimal risk” involved in the study, such as in a study testing new medications. The risk level that a proposal is given is determined based on how identifiable the data is that you are collecting from the participants, what are the real and likely physical, emotional, or psychological risks of participating in the research, and whether any of the participants belong to any protected groups (like children) that may be vulnerable to coercion.
The research that we do as a part of the TIDESS project (and most INIT Lab research) typically falls into the Expedited category, as it poses no more than minimal risk to the participants. But what exactly does it mean for research to have “risk”? Research which many would think is perfectly safe, such as studying interactions with our touchscreen interfaces, actually involves possibly collecting many types of sensitive data from our participants. Even things such as contact information sheets can hold confidential identifiable data such as phone numbers, full names, and even addresses. However, following the IRB regulations assures that this information is seen only by those who need to see it and is stored in a secure environment. If information like this were to be handled unsafely, it could lead to personal data being leaked to the public.
One of my first moments seeing these regulations in action occurred when analyzing data of participants interacting with our sphere prototype (see Pufferfish). As part of our analysis, we were going to look at the videos of these participants interacting with the prototype, alongside written transcripts of everything they said. When I received access to these transcripts as a member of the team, every participant name was already replaced with a participant number, concealing any personal data that may have been present in the videos. Alongside this, the videos were stored on an encrypted hard drive, set to delete itself if the person who tried to access it did not have the correct password. Later, when making a presentation about the videos to the lab, we blurred out the faces of all the participants, when possible. All these security measures were done even though this information was just being utilized in the lab, and not in any way accessible by the public. If we were to have given this presentation to the public, we would take even more care to make sure anything that can be traced back to the participant would be removed. Any instances of participant names would be replaced with a number, and all faces would be blurred or even removed if possible. All audio would be checked/removed so that no personal information (names, etc.) is revealed. This would be done to make sure that nobody can use the information to identify the participants, fulfilling the privacy and protection goals of the IRB.
Another important factor of the IRB process is known as informed consent, where the participant is told exactly what the purpose of the study is, and the procedures they will have to do to participate. The goal is to ensure that they understand all the potential risks and benefits of the study to be able to decide for themselves if they would like to participate in the study. The participant has the right to withdraw from the study at any time (or choose not to participate), and the informed consent process assures that the participant is aware of their rights and understands them fully.
As a first-year student at UF, and a newcomer to the world of research studies, my time with the lab has changed my thoughts on the IRB. I realized that what I once thought were just excessive rules (e.g., blurring faces for in-lab presentations) are vital in protecting the participants of our studies. Privacy and protection plays a huge role in the research process, one which I was not initially aware of. The data we have access to is sensitive, and the IRB is there to assure that it is kept secure, in order to prevent dangerous consequences to our participants. Overall, the IRB allows us to conduct research in a way that prioritizes the safety and privacy of participants, and assures that they understand the full scope of what it is they are participating in.
by Schuyler Gleaves
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