Data Access Committee Review Standards (DACReS) Toolkit

Provides guiding principles and procedural standards for data access committees

Data sharing has the potential to accelerate scientific discoveries and improve medical care. However, it is also important to prevent data misuse and exploitation. Data access committees (DACs) can help manage the data access process by reviewing requests and deciding whether or not to grant access. To ensure that data access requests are met with consistent review criteria, the GA4GH Regulatory & Ethics Work Stream (REWS) is developing a Data Access Committee Review Standards (DACReS) Toolkit. The first available tool is the Data Access Committee Guiding Principles and Procedural Standards Policy. This policy offers a roadmap for creating standard operating procedures for DACs, solutions for data leaks, progress reporting, and policy implementation through essential and desired criteria.

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Benefits

  • Provides guidance for data access committees, aiming to harmonise best practices across institutions
  • Promotes more efficient, secure, and consistent procedures for data access
  • Builds greater trust in the data access committee review process across institutions, repositories, and researchers

Target users

Data access committees

A diagram depicting four ways that DACReS can improve data sharing.
Image summary: The Data Access Committee Review Standards (DACReS) Toolkit supports data access committees across the globe to better review data access requests.
THEME
CATEGORY
TYPE
STATUS
Work Streams
LATEST VERSION
v1.0
Product Leads
  • Jonathan Lawson
  • Vasiliki Rahimzadeh
Staff Contact

Community resources

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Data access processes can pose several challenges to research ethics. Overly restrictive policies can prevent data sharing, hindering advances in scientific research. Overly permissive policies can jeopardise a participant or patient’s privacy and erode trust. An institution’s data access committee (DAC) can safeguard the data access process by reviewing researchers’ data access requests and ensuring that their intended research purpose matches the participant or patient’s original consents.

However, there are no standard operating procedures that apply across DACs. To promote greater coordination, collaboration, and efficiency among DACs, the DACReS team created the Data Access Committee Guiding Principles and Procedural Standards Policy as the first tool in its toolkit. The policy outlines guiding principles for responsible oversight of genomic data, the importance of transparency in the data access process, essential standard operating procedures for DACs, criteria for assessing access applications, progress reporting, data management incidences, and mechanisms for implementing the policy through essential and desired criteria. The DACReS Toolkit aims to provide further clarity on a number of additional relevant issues.


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Duration

Working meeting to continue the development of resources and guidance for Data Access Committees (DACs)

ad hoc
ad hoc
UTC
1 Hour

Don't see your name? Get in touch:

  • Rebecca Boyles
    RTI International
  • Hayley Clissold
    Wellcome Sanger Institute (WSI)
  • Thijs Devriendt
    KU Leuven
  • Jaime Guidry Auvil
    NIH National Cancer Institute (NCI)
  • Saumya Jamuar
    KK Women's and Children's Hospital
  • Yann Joly
    Centre of Genomics and Policy
  • Jonathan Lawson
    Broad Institute of MIT and Harvard
  • Arshiya Merchant
     
  • Madeleine Murtagh
    University of Glasgow
  • Ann Novakowski
    Sage Bionetworks
  • Dina Paltoo
    NIH National Heart, Lung, and Blood Institute (NHLBI)
  • Vasiliki Rahimzadeh
    Baylor College of Medicine
  • Maili Raven-Adams
    The Nuffield Council on Bioethics
  • Laura Lyman Rodriguez
    Patient-Centered Outcomes Research Institute (PCORI)
  • Matthieu Schapranow
    Hasso Plattner Institute for Digital Engineering
  • Christine Suver
    Sage Bionetworks
  • Adrian Thorogood
    Terry Fox Research Institute
  • Ye Yan
    NIH National Heart, Lung, and Blood Institute (NHLBI), Trans-Omics for Precision Medicine (TOPMed)

News, events, and more

Catch up with all news and articles associated with Data Access Committee Review Standards (DACReS) Toolkit.

10 Jun 2022
GA4GH Data Access Committee Review Standards policy aims to standardise the data access process
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8 Jul 2021
GA4GH standards in a global learning health system
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