Usta Sila, Kundu Noor, Gowlett-Park Dylan, Lin August, Misura Alexandra, Czibere Katarina, Zhang Liying, Bigun Olga, Sasso Renato, Gunalingam Thibika, Ukpong Winston, Khazaee Tina, Wong Betty, Matsumura Samuel, Tsui Hubert, Chow Signy
Sunnybrook Biobank, Department of Laboratory Medicine and Molecular Diagnostics, Precision Diagnostics and Therapeutics Program, Sunnybrook Health Sciences Centre, Toronto, ON, Canada.
Division of Hematological Pathology, Department of Laboratory Medicine and Molecular Diagnostics, Precision Diagnostics and Therapeutics Program, Sunnybrook Health Sciences Centre, Toronto, ON, Canada.
Eur J Hum Genet. 2025 Jun 30. doi: 10.1038/s41431-025-01898-7.
Biobanks are an essential resource for researchers conducting scientific and translational research but require significant support from institutions and healthcare workers (HW) to operate and are reliant on patient consent and participation. In order to better understand the barriers to institution-wide biobanking, we conducted a survey to examine the knowledge, attitudes and concerns of patients and HW on a range of biobanking-related topics, including consenting practices, privacy and trust in the healthcare team and researchers, and current practices at Sunnybrook Health Sciences Centre. Overall, we found that there is strong patient and HW support for biobanking as a resource for research (89-96%). Furthermore, the majority 53% of HW are willing to incorporate biobanking into their clinical workflow and 39% had a neutral response. Encouragingly, patients possess a high level of trust in their healthcare team (80-99%). The main concerns regarding sample donation were 'breaches of privacy' and 'genetic information being used in an exclusionary (discriminatory) fashion.' Concerns around specimen utilization emerged as a major theme from HW. These results will inform and enhance future biobanking practices to improve the patient experience and increase patient engagement while streamlining specimen collection and utilization for scientific research.
生物样本库是从事科学研究和转化研究的人员的重要资源，但需要机构和医护人员的大力支持才能运作，并且依赖于患者的同意和参与。为了更好地了解全机构范围内生物样本库存在的障碍，我们开展了一项调查，以考察患者和医护人员在一系列与生物样本库相关主题上的知识、态度和担忧，这些主题包括同意程序、对医护团队和研究人员的隐私及信任，以及森尼布鲁克健康科学中心的现行做法。总体而言，我们发现患者和医护人员大力支持将生物样本库作为一种研究资源（89%-96%）。此外，大多数（53%）医护人员愿意将生物样本库纳入其临床工作流程，39%的人持中立态度。令人鼓舞的是，患者对其医护团队高度信任（80%-99%）。关于样本捐赠的主要担忧是“隐私泄露”和“基因信息被用于排他性（歧视性）用途”。医护人员提出的主要担忧是样本利用问题。这些结果将为未来的生物样本库实践提供信息并加以改进，以改善患者体验，提高患者参与度，同时简化科研样本的采集和利用。
