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  11. Controlled Access Under Review: Improving The Governance Of Genomic Data Access

Controlled Access under Review: Improving the Governance of Genomic Data Access

Mahsa Shabani1, Stephanie O M Dyke2, Yann Joly2

  • 1Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Leuven, Belgium.

Plos Biology
|January 1, 2016

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View abstract on PubMed

Summary
This summary is machine-generated.

Data access committees (DACs) are crucial for managing genomic data sharing. Careful structuring of DACs is needed to prevent conflicts of interest and ensure responsible data access.

Area of Science:

  • Genomics
  • Bioinformatics
  • Data Management

Background:

  • Genomic data production has surged, necessitating robust data sharing practices.
  • Data Access Committees (DACs) are established mechanisms for governing data access.
  • Existing DACs and emerging committees require updated frameworks for effective operation.

Purpose of the Study:

  • To identify core elements for effective access review by Data Access Committees (DACs).
  • To promote fair, efficient, and responsible access to sensitive datasets.
  • To address potential conflicts of interest within DACs that could impede data sharing.

Main Methods:

  • Literature review and analysis of current data access governance models.
  • Examination of the role and potential biases of data producers in DACs.

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  • Discussion of best practices for DAC structuring and access protocols.

    • Main Results:

    • Access review processes can be compromised by conflicts of interest among data producers.
    • Data producers' direct involvement in DAC management poses a risk to unbiased review.
    • Potential data withholding by data producers requires careful consideration in policy development.

    Conclusions:

    • DACs must be structured to mitigate conflicts of interest inherent in data producer involvement.
    • Protocols should be implemented to prevent data withholding and ensure equitable data access.
    • Responsible data sharing hinges on transparent and unbiased access review mechanisms within DACs.