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Biobank for Translational Medicine: Standard Operating Procedures for Optimal Sample Management
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Future-proofing biobanks' governance.

Felix Gille1, Effy Vayena2, Alessandro Blasimme3

  • 1ETH Zürich, Department of Health Sciences and Technology, Health Ethics and Policy Lab, Zürich, Switzerland. felix.gille@hest.ethz.ch.

European Journal of Human Genetics : EJHG
|May 20, 2020
PubMed
Summary
This summary is machine-generated.

Biobanks employ six governance strategies for transparency and accountability, but often lack detailed information on how these ensure oversight. Enhancing governance details is crucial for maintaining public trust in research biobanks.

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Area of Science:

  • Biobanking and Biomedical Research Governance
  • Data Management and Ethics in Research Repositories

Background:

  • Effective biobank governance requires transparency, accountability, and oversight mechanisms.
  • The specific strategies employed by biobanks to achieve these principles are not well-documented.

Purpose of the Study:

  • To explore and categorize the governance strategies adopted by research biobanks in Europe and Canada.
  • To identify common mechanisms used to implement governance principles in biobanking.

Main Methods:

  • An exploratory analysis of governance mechanisms was conducted on 69 research biobanks.
  • Information was gathered through website reviews and direct contact with biobanks.

Main Results:

  • Six common governance strategies were identified: communication, compliance, expert advice, external review, internal procedures, and partnerships.
  • Mechanisms include ethics assessment, informed consent, quality management, data access control, and standard operating procedures.
  • While most biobanks aim for transparency, detailed information on accountability and oversight mechanisms is often lacking.

Conclusions:

  • Biobanks utilize diverse mechanisms to implement governance, but clarity on accountability and oversight needs improvement.
  • Increased transparency regarding governance details is essential to build and maintain stakeholder and public trust.
  • Future-proofing biobank governance is recommended due to the increasing reliance on these repositories in biomedical research.