Transparency About Governance Contributes to Biobanks' Trustworthiness: Call for Action
METADATA ONLY
Loading...
Author / Producer
Date
2021-02-09
Publication Type
Journal Article
ETH Bibliography
yes
Citations
Altmetric
METADATA ONLY
Data
Rights / License
Abstract
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.
Permanent link
Publication status
published
External links
Editor
Book title
Journal / series
Volume
19 (1)
Pages / Article No.
83 - 85
Publisher
Mary Ann Liebert
Event
Edition / version
Methods
Software
Geographic location
Date collected
Date created
Subject
Trust; Trustworthiness; Governance; Biobanking; Transparency
Organisational unit
09614 - Vayena, Eftychia / Vayena, Eftychia