Differences in willingness to provide biospecimens among patients and IRB members: effect of gender and governance confidence

Understanding factors influencing willingness to provide biospecimens, including gender, privacy concerns, and perceptions of research governance, is important for robust biobank governance. Patients and institutional review board (IRB) members play distinct roles in biobank governance, yet empirical data directly comparing their attitudes are limited. We conducted a cross-sectional survey of patients from an urban medical center in northern Taiwan and IRB members from multiple institutions. The questionnaire assessed hypothetical willingness to donate biological samples for medical research (yes/no), privacy concerns (six-item scale), a 4-item governance-related attitudes index (used as a proxy measure of trust in research governance), and sociodemographic and experiential characteristics. Total privacy and governance-related index scores were dichotomized at the sample median to define high versus low privacy concern and higher versus lower governance-related confidence. Gender-stratified comparisons were performed separately for patients and IRB members. A multivariable logistic regression model was fitted to identify independent predictors of willingness to provide biospecimens. Among 301 participants (154 patients and 147 IRB members), overall willingness to donate biospecimens was high but differed by gender and stakeholder group. Among patients, willingness did not differ significantly between women and men (74.4% vs. 81.8%, p = 0.511). Among IRB members, men were more willing than women to provide biospecimens (87.3% vs. 62.0%, p = 0.002). In the multivariable model, being female was independently associated with lower willingness to donate (adjusted odds ratio (AOR) 0.35, 95% confidence interval (CI) 0.17–0.71), while higher scores on the governance-related attitudes index, reflecting greater confidence in research oversight and governance mechanisms, were associated with greater willingness (AOR 4.02, 95% CI 2.24–7.21). Age, education, marital status, prior clinical research participation, history of surgery, and overall privacy concern were also independently associated with willingness. In this study, willingness to provide biospecimens was most strongly associated with female sex and governance-related attitudes. These findings underscore the ethical concerns of biobank governance frameworks that obviously address gender-related concerns, and strengthen confidence in oversight, transparency, and responsible data stewardship among both patients and IRB members.