Health Ethics and Policy Lab, Department of Health Sciences and Technology, ETH Zürich, Zürich, Switzerland.
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada.
Biopreserv Biobank. 2021 Feb;19(1):83-85. doi: 10.1089/bio.2020.0057. Epub 2020 Oct 30.
This article examines biobank transparency mechanisms vis-à-vis their public information, as found on the public biobank webpages. Two independent studies about biobank governance in Europe and Canada identified a lack of governance-related information provided by biobanks on their public webpages. This lack of transparency stands in contrast to governance best practice guidelines highlighting the importance of transparency as a principle of good governance. Transparency is especially important as many biobanks are publicly funded, and it contributes to accountability and supports the development of donor trust in biobanks. Empirical evidence shows that the public supports greater transparency about biobank governance. It will be important that information provided online is relevant and accessible for a variety of different stakeholders (e.g. public and private sector scientists and institutions, donors and potential donors, members of the public). Transparency standards, however, need to be proportionate to avoid the situation that only large-scale biobanks can allocate appropriate resources to fulfil them. Implementing adequate standards of transparency about biobanks' governance will increase accountability but also allow current and future participants to make more informed decisions about their participation in biobank activities.
本文研究了生物库透明度机制与其公共信息之间的关系，这些公共信息可以在公共生物库网页上找到。两项关于欧洲和加拿大生物库治理的独立研究发现，生物库在其公共网页上提供的与治理相关的信息不足。这种缺乏透明度与治理最佳实践准则形成鲜明对比，这些准则强调透明度是良好治理原则的重要组成部分。透明度尤为重要，因为许多生物库是由公共资金资助的，这有助于提高问责制，并支持发展对生物库的捐赠者信任。实证证据表明，公众支持增加生物库治理的透明度。重要的是，在线提供的信息对于各种不同的利益相关者（例如公共和私营部门的科学家和机构、捐赠者和潜在的捐赠者、公众）是相关且易于获取的。然而，透明度标准需要与情况相称，以避免只有大型生物库才能分配适当的资源来满足这些标准的情况。实施关于生物库治理的充分透明度标准将提高问责制，但也允许当前和未来的参与者更明智地决定参与生物库活动。
