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.