Building Trust in Clinical Research

UTA faculty say more communication is needed to help ease fears among research participants

Tuesday, May 28, 2024 • Neph Rivera : contact

Photo of UTA CONHI faculty members Kyrah Brown and Yue Liao" _languageinserted="true
Kyrah Brown (left) and Yue Liao

For public health researchers, involving community members in a study is critical to finding meaningful results. Sometimes, involvement means responding to questionnaires and surveys. Other times, it means giving blood samples or other biomaterials.

For some prospective participants, though, submitting samples is a red flag. A team of researchers at University of Texas at Arlington wanted to find out why.

In an article for the peer-reviewed Journal of Racial and Ethnic Health Disparities, a team led by Kyrah Brown, assistant professor of kinesiology in the College of Nursing and Health Innovation, explored Black women’s willingness to provide blood samples for clinical research.

The idea for the research was sparked when Liao Yue, co-author on the study and assistant professor of kinesiology, was discussing a potential project with Brown, one that would include the possibility of asking for blood samples from Black women.

“To me, that’s a very standard procedure in research. I never thought too much that this would be a problem,” Liao said.

That’s when Brown mentioned the general feeling of mistrust that some Black women may feel when it comes to submitting sensitive information about themselves. This is especially true among generally healthy women who are not used to giving blood, compared to those who may have chronic conditions and be more familiar with the process.

“Prior research with older Black cancer patients has reported generally positive attitudes toward biospecimen donation, but little is known about younger individuals,” Brown said.

She and her team asked nearly 500 Black women ages 18-49 to complete an online survey about their attitude toward giving blood for clinical health research. They found that less than half, 44%, would be willing to take part.

Among those who were not willing, some reported concerns about the transparency of the work and feared for their privacy. Others said their mistrust in providing samples stemmed from the institutional racism they believe exists in the medical community. And still others cited a need to trust the research team fully before participating.

Some of the findings contradicted older studies of Black adults’ willingness to donate samples. Brown believes that part of the reason for the disparity may be the age of participants, as this was one of the first studies to focus on the younger Black population and their thoughts.

“I think there’s a generational piece that came to light,” she said. “Some research suggests that Millennial and Gen Z members tend to have a heightened, more sensitive awareness of historical and contemporary racial injustices in the medical field. This shined through with the results.”

“I was very surprised to see the thorough answers participants submitted,” Liao added. “Typically, people skip right to saying yes or no without explaining. But here, people wrote and shared a lot.”

Brown emphasized the importance for research teams to be transparent and trustworthy when working with potential study participants.

“We need to have representative samples that are reflective of a diverse population,” she said. “There are differences in lived experiences and how those experiences shape one’s biomarkers and health. That’s why it matters.”

To increase transparency and trust, Liao suggests that both researchers and participants open up dialogue, ask questions and avoid making assumptions.

“We all have the same goal: to be healthy and improve health outcomes. We might just not be talking to each other as often as we should.”