Biobanking knowledge and donation willingness among musculoskeletal patients in England: a multisite cross-sectional study.

OBJECTIVE: To date, few studies have investigated the factors associated with musculoskeletal patients' willingness to donate biological samples and their knowledge regarding the use of such samples. We investigated the associations between these distinct knowledge factors, patients' willingness to donate and socio-demographic factors. DESIGN: Cross-sectional survey. SETTING: Musculoskeletal outpatient clinics across four sites in England, representing varied demographic populations. PARTICIPANTS: A total of 469 adult patients attending musculoskeletal appointments were recruited through convenience sampling. PRIMARY AND SECONDARY OUTCOME MEASURES: Ordinal regression models were employed to identify socio-demographic and clinical predictors of patients' willingness to donate biological samples. Other outcome measures specifically in two areas of patient knowledge include: (1) knowledge of sample use and (2) knowledge of surgical waste tissue value and management. RESULTS: Only 37% of participants were aware of the term 'biobank'. Despite this, participants showed a high level of knowledge regarding both biological sample use and surgical waste tissue management, although their understanding varied considerably by ethnicity and education. Participants with no formal education exhibited a lower level of knowledge in both areas related to sample use and surgical waste tissue management for biomedical research ((OR 0.30, 95% CI 0.14 to 0.61; p=0.001); (OR=0.29, 95% CI 0.16 to 0.52, p<0.001), respectively). Individuals with ≥2 A-levels or equivalent (OR=0.44, 95% CI 0.24 to 0.79, p=0.006) and those identifying as Asian/Asian British (OR=0.51, 95% CI 0.29 to 0.88, p=0.016) also demonstrated a lower understanding of the value and management of surgical waste tissue. Willingness to donate was generally high but was significantly lower among non-Caucasian participants (Black (OR=0.23, 95% CI 0.08 to 0.61, p=0.004); Asian (OR=0.29, 95% CI 0.15 to 0.56, p<0.001)) and those with lower education levels (no formal education (OR=0.40, 95% CI 0.18 to 0.91, p=0.029); preferred not to disclose (OR=0.27, 95% CI 0.13 to 0.57, p<0.001)). Participants from Manchester were 2.18 times more likely to report a higher willingness (OR=2.18, 95% CI 1.09 to 4.33, p=0.027). Finally, participants who were aware of the term "biobank" had 2.16 times the odds of willingness to donate to biobanking initiatives for biomedical research (OR=2.16, 95% CI 1.23 to 3.77, p=0.007). CONCLUSIONS: Despite low awareness, musculoskeletal patients showed a high willingness to participate in biobanking. However, significant disparities by ethnicity and education persist. Targeted, inclusive engagement strategies are needed to address under-representation and foster informed, equitable participation of musculoskeletal patients in biomedical research.