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Transparency About Governance Contributes to Biobanks' Trustworthiness: Call for Action
Felix Gille1, Renata Axler2, Alessandro Blasimme1
1Health Ethics and Policy Lab, Department of Health Sciences and Technology, ETH Zürich, Zürich, Switzerland.
Biopreservation and Biobanking
|October 30, 2020
Summary
Biobanks often lack transparency regarding their governance on public webpages, despite its importance for public trust and accountability. Enhancing online information accessibility is crucial for informed decision-making by donors and stakeholders.
Area of Science:
- Biobanking
- Biomedical Research Governance
- Public Health Policy
Background:
- Biobanks are crucial for research, but their governance transparency is often insufficient.
- Publicly funded biobanks have a particular need for transparency to ensure accountability.
- Existing governance best practices emphasize transparency as a key principle.
Purpose of the Study:
- To examine the transparency of biobank governance mechanisms through their public webpages.
- To assess the availability of governance-related information provided by biobanks.
- To highlight the gap between current practices and best practice guidelines for transparency.
Main Methods:
- Analysis of public biobank webpages for governance information.
- Review of two independent studies on biobank governance in Europe and Canada.
- Comparison of available information against established governance principles.
Main Results:
- A consistent lack of governance-related information was identified on public biobank webpages.
- This deficiency contrasts with recommended standards for good governance.
- Public support for greater biobank transparency has been empirically demonstrated.
Conclusions:
- Increased transparency in biobank governance is essential for public trust and accountability.
- Accessible and relevant online information empowers donors and stakeholders to make informed decisions.
- Transparency standards should be proportionate to avoid overburdening smaller biobanks.
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