The association of medical mistrust, clinical trial knowledge, and perceived clinical trial risk with willingness to participate in health research among historically marginalized individuals living in New York City

TL;DR

This study explores how medical mistrust, knowledge of clinical trials, and perceived risk affect willingness to participate in health research among diverse groups in New York City.

Contribution

The paper provides group-specific insights into how mistrust and knowledge influence research participation willingness among historically marginalized communities.

Findings

46.0% of participants were willing to participate in health research, with South Asian participants showing the highest willingness.

Medical mistrust and clinical trial knowledge had varying effects on willingness and uncertainty across different racial and ethnic groups.

Studying multiple groups reveals how factors like mistrust and knowledge influence research participation differently among marginalized communities.

Abstract

Medical mistrust, clinical trial knowledge, and clinical trial risk impact research participation, yet are rarely studied among racial and ethnic groups. Data were from a cross-sectional survey (n = 1,794). Multinomial logistic regression models examined associations of medical mistrust, clinical trial knowledge, and clinical trial risk with willingness to participate in health research (Yes, No, Unsure) among Chinese, Korean, South Asian, Haitian, North American Latiné, South American Latiné, and Southwest Asian and North African (SWANA) NYC residents with one model per group. Overall, 46.0% of participants reported willingness to participate, ranging from 35.8% (Chinese participants) to 58.7% (South Asian participants). Increased mistrust was associated with less willingness among Chinese (OR: 1.06, 95%CI: 1.00, 1.12) and South American Latiné (OR: 1.15, 95%CI: 1.02, 1.30) participants; more willingness among Haitian participants (OR: 0.87, 95%CI: 0.81, 0.94); more uncertainty among Korean (OR: 1.13, 95%CI: 1.05, 1.22), South Asian (OR: 1.06 95%CI: 1.01, 1.12), and North American Latiné (OR: 1.18, 95%CI: 1.10, 1.28) participants; and less uncertainty among Haitian (OR: 0.91, 95%CI: 0.84, 0.99) and SWANA (OR: 0.91, 95%CI:0.86, 0.97) participants. Knowledge was associated with more willingness for Haitian participants (OR: 2.77, 95%CI: 1.15, 6.65), less willingness for Chinese participants (OR: 0.55, 95%CI: 0.34, 0.88), and more uncertainty among South Asian (OR: 2.09, 95%CI: 1.07, 4.07) and SWANA (OR: 2.71, 95%CI: 1.21, 6.03) participants. Some risk and more willingness were linked for South American Latiné participants (OR: 0.13, 95%CI: 0.02, 0.82). Associations varied by group. Studying multiple racial and ethnic groups advances equitable research representation.