Cognition, attitudes, and willingness toward biobank donation among the older adults: a cross-sectional survey of 1,143 participants in China

Abstract Background Biobanks are fundamental infrastructures for medical research, and their sustainable development depends on public participation and support. Older adults are at high risk of age-related diseases, making their biospecimens particularly valuable for scientific research. Amid global population aging, understanding the perceptions and willingness of older adults regarding biobank participation is essential. However, empirical evidence on this topic remains scarce in China. Methods A cross-sectional survey was conducted using a self-administered questionnaire among 1,143 Chinese participants, of whom 745 (65.18%) were aged ≥ 60 years (older group) and 398 (34.82%) were aged 20–60 years (control group). The questionnaire covered demographic information, awareness of biobanks, donation willingness, informed consent preferences, and related attitudes. Chi-square tests and Spearman’s rank correlation were used for statistical analysis. Results Awareness of biobanks among older adults was low, with 14.96% of the total sample reporting having heard of biobanks, willingness to donate was divergent, with 34.03% of the total sample expressing willingness. The primary motivations were “research will improve disease diagnosis and treatment” (41.03%) and “understanding my own health” (30.10%). Major concerns included “potential harm to personal health” (35.52%) and “privacy leakage” (34.12%). Regarding informed consent, 32.28% opposed the “broad” consent model, 53.98% were unaware of the right to withdraw consent at any time, and 36.48% opposed the use of samples beyond the initial consent scope. Age was positively correlated with awareness (ρ = 0.326) and donation willingness (ρ = 0.227) (both P < 0.001). Chi-square tests showed that age, marital status, income, education, self-rated health, and activities of daily living were influencing factors of donation willingness (all P < 0.05). Conclusions Older adults have limited knowledge of biobanks but display a split willingness, a substantial minority (34.03% of the total sample) expressed willingness, with a notable proportion remaining uncertain, forming an “awareness-willingness gap”. Their donation decisions are driven by both altruistic and self-oriented motives, whereas concerns center on health risks and privacy protection. There is a substantial information deficit regarding informed consent. These findings highlight the need for tailored public communication, optimized consent procedures (e.g., tiered consent), enhanced privacy protection, and transparent governance to promote the informed and sustained participation of older adults in biobank research.

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Journal
BMC Medical Ethics
Published
2026-10-05
DOI
https://doi.org/10.1186/s12910-026-01594-1
Primary Topic
Ethics in Clinical Research
Type
article
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article

Cognition, attitudes, and willingness toward biobank donation among the older adults: a cross-sectional survey of 1,143 participants in China

Chunhua Zhou, Yuwen Luy, Guoyun Cheng, Junrong Liu et al.
BMC Medical Ethics
Ethics in Clinical Research
article

Cognition, attitudes, and willingness toward biobank donation among the older adults: a cross-sectional survey of 1,143 participants in China

Chunhua Zhou, Yuwen Luy, Guoyun Cheng, Junrong Liu, Guodong Zhu
article en

Abstract

Abstract Background Biobanks are fundamental infrastructures for medical research, and their sustainable development depends on public participation and support. Older adults are at high risk of age-related diseases, making their biospecimens particularly valuable for scientific research. Amid global population aging, understanding the perceptions and willingness of older adults regarding biobank participation is essential. However, empirical evidence on this topic remains scarce in China. Methods A cross-sectional survey was conducted using a self-administered questionnaire among 1,143 Chinese participants, of whom 745 (65.18%) were aged ≥ 60 years (older group) and 398 (34.82%) were aged 20–60 years (control group). The questionnaire covered demographic information, awareness of biobanks, donation willingness, informed consent preferences, and related attitudes. Chi-square tests and Spearman’s rank correlation were used for statistical analysis. Results Awareness of biobanks among older adults was low, with 14.96% of the total sample reporting having heard of biobanks, willingness to donate was divergent, with 34.03% of the total sample expressing willingness. The primary motivations were “research will improve disease diagnosis and treatment” (41.03%) and “understanding my own health” (30.10%). Major concerns included “potential harm to personal health” (35.52%) and “privacy leakage” (34.12%). Regarding informed consent, 32.28% opposed the “broad” consent model, 53.98% were unaware of the right to withdraw consent at any time, and 36.48% opposed the use of samples beyond the initial consent scope. Age was positively correlated with awareness (ρ = 0.326) and donation willingness (ρ = 0.227) (both P < 0.001). Chi-square tests showed that age, marital status, income, education, self-rated health, and activities of daily living were influencing factors of donation willingness (all P < 0.05). Conclusions Older adults have limited knowledge of biobanks but display a split willingness, a substantial minority (34.03% of the total sample) expressed willingness, with a notable proportion remaining uncertain, forming an “awareness-willingness gap”. Their donation decisions are driven by both altruistic and self-oriented motives, whereas concerns center on health risks and privacy protection. There is a substantial information deficit regarding informed consent. These findings highlight the need for tailored public communication, optimized consent procedures (e.g., tiered consent), enhanced privacy protection, and transparent governance to promote the informed and sustained participation of older adults in biobank research.

BMC Medical Ethics
Jinan University (CN), Second Affiliated Hospital of Guangzhou Medical University (CN), Guangdong Provincial People's Hospital (CN), Guangzhou Medical University (CN)
Good health and well-being
Openalex Percentile: Top 10%
Ethics in Clinical Research
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