Lee Yoon Seo, Garrido Nelson Luis Badia, Lord George, Maggio Zane Allan, Khomtchouk Bohdan B
Harvard John A. Paulson School of Engineering and Applied Sciences, Harvard University, Cambridge, Massachusetts, USA.
The College of the University of Chicago, Chicago, Illinois, USA.
Bioethics. 2025 Mar;39(3):240-249. doi: 10.1111/bioe.13381. Epub 2024 Dec 10.
Biobanks are essential biological database resources for the scientific community, enabling research on the molecular, cellular, and genetic basis of human disease. They are crucial for computational, data-driven biomedical research, which advances precision medicine and the development of targeted therapies. However, biobanks often lack racial and ethnic diversity, with many data sets predominantly comprising individuals of white, primarily northern European, ancestry. Establishing or enhancing biobanks for the inclusion of historically underrepresented populations requires meticulous ethical and social planning beyond logistical, legal, and economic considerations. This guide provides a roadmap for building and sustaining diverse biobanks, emphasizing ethical guidelines and cultural sensitivity. We highlight the importance of obtaining informed consent from donors, respecting their bodily autonomy, and the economic and research benefits of diverse biobanks to enable precision medicine, drug discovery, and industry-academic partnerships. Prioritizing key ethical and social considerations allows biobanks to advance scientific knowledge while upholding the rights and autonomy of underrepresented populations. Diversity in biobank sample collection enhances research outcomes by ensuring findings are representative and applicable to various human population groups, fostering trust, promoting inclusivity, and addressing health disparities while informing health policy. This is vital to ensuring biobanking efforts contribute meaningfully to the advancement of health equity.
生物样本库是科学界重要的生物数据库资源，有助于开展关于人类疾病分子、细胞和遗传基础的研究。它们对于计算驱动的数据型生物医学研究至关重要，推动了精准医学和靶向治疗的发展。然而，生物样本库往往缺乏种族和民族多样性，许多数据集主要由白人（主要是北欧血统）个体组成。建立或加强生物样本库以纳入历史上代表性不足的人群，除了后勤、法律和经济方面的考虑外，还需要精心的伦理和社会规划。本指南提供了建立和维持多样化生物样本库的路线图，强调伦理准则和文化敏感性。我们强调从捐赠者处获得知情同意、尊重他们的身体自主权的重要性，以及多样化生物样本库对精准医学、药物发现和产学研合作的经济和研究益处。优先考虑关键的伦理和社会因素，能使生物样本库在推进科学知识的同时，维护代表性不足人群的权利和自主权。生物样本库样本采集的多样性通过确保研究结果具有代表性并适用于各种人群，增强了研究成果，促进了信任，推动了包容性，解决了健康差距问题，同时为卫生政策提供了信息。这对于确保生物样本库工作为健康公平的推进做出有意义的贡献至关重要。
