Lack of Trust and Knowledge Hinders Genetic Research Recruitment

Researchers seeking to recruit participants from underrepresented racial and ethnic groups for cardiovascular genetic research may find distrust is a barrier to enrollment. “Trust in medical researchers varies by race and ethnicity, and can influence patients’ participation in research studies,” says Hanyu Ni, PhD, a research associate professor in the division of human genetics in The Ohio State University College of Medicine.

However, little was known about general genomic knowledge level among patients with established heart disease, and how it is associated with trust in medical researchers. Ni and colleagues sought to better understand those potential barriers to participation in genomic research. They analyzed genome-sequencing knowledge scores and research trust scores for 1,121 patients with idiopathic dilated cardiomyopathy.¹ Levels of knowledge and trust varied significantly by race and ethnicity. “This could help researchers identify the subgroups that may need more attention and specific strategies for education,” Ni says.

The level of genome-sequencing knowledge was low among patients, especially in non-Hispanic Black and Hispanic patients. The level of trust in medical researchers was lowest in non-Hispanic Black participants, followed by Hispanic participants.

“Although racial and ethnic differences in knowledge and trust were reported previously, most of those studies were conducted among patients with cancer,” Ni notes.

A higher level of trust was associated with a higher level of genome-sequencing knowledge. This was true across all the racial and ethnic groups studied. “This is the first study that identified this association,” Ni says. Investigators did not test tactics that researchers can use to improve trust of study participants. However, since higher level of knowledge of genetics was associated with more trust in research, the authors suggested using lay language to better explain genetic research as part of the informed consent process.

“Addressing participants’ concerns carefully may help in gaining participants’ trust in research, and thus improve recruitment of diverse patient populations,” Ni offers.

REFERENCE

1. Ni H, Jordan E, Cao J, et al. Knowledge of genome sequencing and trust in medical researchers among patients of different racial and ethnic groups with idiopathic dilated cardiomyopathy. JAMA Cardiol 2023;8:33-42.