Huang Mingtao, Yu Lanyi, Wang Xiaonan, Li Kun, Wang Jichao, Cheng Xinrui, Zhai Xiaomei
School of Population Medicine and Public Health, Chinese Academy of Medical Sciences & Peking Union Medical College, Beijing, China.
BMC Med Ethics. 2025 Jan 11;26(1):2. doi: 10.1186/s12910-025-01163-y.
Biobanks are vital for advancing medical research, and public participation is a crucial determinant of their success. This study uses a survey to assess the awareness, attitudes, and motivation of the public in China with regard to participating in biobanks.
We conducted an online survey that yielded 616 responses from participants with diverse demographic backgrounds. The survey included questions on the respondents' awareness of biobanks, their attitudes toward them, their preferences with regard to consent, and their concerns.
The results of the survey revealed that 57.95% of the respondents were aware of biobanks. Altruism was the respondents' primary motivation for participation in biobanks. Their preferences for models of consent varied. The respondents raised concerns about the commercialization of biobanks (56.66%) and data privacy (55.84%). Notably, only 37.01% of the respondents were concerned about the risk of discrimination in biobanks, where this was lower compared with the results for populations in Western countries.
This study provides valuable insights into the Chinese public's awareness of and attitudes toward biobanks. To foster public trust and enhance participation, biobanks should prioritize transparent and continual communication to ensure that the participants are well informed about the use and protection of the samples that they have donated. Future research should explore the influence of cultural nuances to develop strategies that address specific concerns and ethical challenges in the context of public participation in biobanks.
生物样本库对推进医学研究至关重要，公众参与是其成功的关键决定因素。本研究通过一项调查来评估中国公众对参与生物样本库的认知、态度和动机。
我们开展了一项在线调查，共收到来自不同人口统计学背景参与者的616份回复。该调查包括关于受访者对生物样本库的认知、对它们的态度、对同意模式的偏好以及他们的担忧等问题。
调查结果显示，57.95%的受访者知晓生物样本库。利他主义是受访者参与生物样本库的主要动机。他们对同意模式的偏好各不相同。受访者对生物样本库商业化（56.66%）和数据隐私（55.84%）表示担忧。值得注意的是，只有37.01%的受访者担心生物样本库中的歧视风险，这一比例低于西方国家人群的调查结果。
本研究为中国公众对生物样本库的认知和态度提供了有价值的见解。为了增进公众信任并提高参与度，生物样本库应优先进行透明且持续的沟通，以确保参与者充分了解他们所捐赠样本的使用和保护情况。未来的研究应探讨文化细微差异的影响，以制定应对公众参与生物样本库背景下特定担忧和伦理挑战的策略。
