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首页> 外文期刊>Biopreservation and biobanking >Transparency About Governance Contributes to Biobanks' Trustworthiness: Call for Action
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Transparency About Governance Contributes to Biobanks' Trustworthiness: Call for Action

机译：关于治理的透明度有助于BioBanks的可信度：呼吁采取行动

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摘要

This article examines biobank transparency mechanisms vis-a-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.
机译：本文审查了Biobank透明机制Vis-A-VIS的公共信息，如公共生物法在公共BIOBANK网页上发现。关于欧洲和加拿大的两项关于BIOBANK治理的独立研究确定了BIOBANKS在其公开网页上提供的缺乏治理相关信息。这种缺乏透明度与治理最佳实践指南相比，突出了透明度作为善政原则的重要性。透明度尤为重要，因为许多生物人民被公开资助，它有助于问责制，支持在BioBanks中的发展捐助者信任。经验证据表明，公众支持对Biobank治理的更大透明度。重要的是，在线提供的信息是相关的，可用于各种不同的利益相关者（例如，公共和私营部门科学家，捐助者和潜在捐助者，公众成员）。然而，透明度标准需要比例以避免只有大规模生物人物可以分配适当资源以实现它们的情况。实施关于Biobanks治理的适当透明度标准将增加问责制，但也允许当前和未来的参与者在参与BioBank活动方面做出更明智的决定。

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