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The IRB and me: How does the IRB protect research participants?

Part 3 of a four-part series about the Institutional Review Board explores all sides of the research participant experience.

This story is the third in a four-part series exploring the role of the Institutional Review Board at the University of Utah. Find Part 1 here, Part 2 here and Part 4 here.

In this series, we’ve met various people connected to the IRB: a staff member, two board members and a researcher. Now let’s see the experience through the eyes of a participant. This one is going to be a little different because it didn’t go as smoothly as it could have. But the IRB is always working to make things better.

Jeanette Villalta is a community health worker who first learned about participating in University of Utah research through a coworker. After registering to participate in a study, Villalta traveled to the U for a preliminary interview. Although parking on campus can often be challenging, Villalta has a handicap placard and parked in a designated handicap spot. She was unpleasantly surprised to find a ticket on her car after the interview since some on-campus handicap spots are for student or faculty/staff permit holders only.

“I thought that the handicap spots were for everybody,” she said.

Next, she met with a researcher to go over the consent form, including who to contact if she had any problems or concerns with the study.

“It was in English,” she said. “Fortunately, I speak a little bit of English and understand if I read it. But it wasn’t in Spanish, my language.” Thanks to Google, she was able to find translations as needed.

“Sometimes,” she said, “when you really don’t understand a hundred percent the language, it could be challenging.”

Then researchers asked her to remove her shoes to be measured, something she wasn’t physically able to do on her own. After conferring with the study’s principal investigator, the researchers decided to bypass that measurement step.

“Probably they are not ready to work with the handicapped population, or maybe they didn’t think about that,” she said. In the end, after several weeks of coaching, she did not complete the study.

“The University of Utah IRB is dedicated to the protection of people who participate in research and always want to hear about those experiences,” said U IRB director Ann Johnson. “In our efforts to better prepare researchers to address concerns and problems, we greatly appreciate participants like Jeanette Villalta who are willing to share their experiences as study participants. We look forward to hearing more from participants and working to foster a beneficial and collaborative relationship between researchers and the community.”

Her next research experience, as a participant in a focus group, was much better. This time, the consent form was in Spanish.

“And that is good because I can understand exactly what they mean,” she said. “Or, if they have someone at the focus group that speaks my language, they can explain to me and then I can participate more.” Also, she said, the focus group was just one session, compared to the previous study’s longer timeframe.

Even though her experiences varied, the IRB was a constant, which reassured her.

“It gives you a little bit of security when they mention the IRB,” she said, “even if you don’t understand exactly all they do.”

That reassurance is important, she adds, for the immigrant community.

“It’s not 100% trusting,” she said. “But it’s something. At least you know that there is a group that you can communicate with in case something happens.”

Villalta’s advice to others participating in research is to read the consent forms thoroughly and carefully to learn all that the study entails.

“How long is it going to take? What is involved in the study?” she said. “Do you have to get blood samples? Do you have to sleep overnight somewhere? Is it invasive or not invasive? So, please read the consent. And if you don’t understand, ask questions. Always ask questions.”

Learn more about the IRB in the other parts of this series or on their website here.

Part 1 explores the history and operations of the IRB.

Part 2 shows how the IRB interacts with and helps researchers.

Part 4 introduces two IRB members and how they approach reviewing a study.