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Learn how GA4GH helps expand responsible genomic data use to benefit human health.
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 Toolkit contains:
- Data Access Committee Guiding Principles and Procedural Standards Policy: This policy offers a road map for creating standard operating procedures for DACs, including solutions for data leaks, progress reporting, and policy implementation through essential and desired criteria.
- Model Data Access Agreement (DAA) Clauses: This document contains template clauses that can be used to draft data access agreements.
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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
Image summary: The Data Access Committee Review Standards (DACReS) Toolkit supports data access committees across the globe to better review data access requests.
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v1.0
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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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5 Dec 2024
15 Dec 2023
14 Sep 2023
13 May 2021
1 Mar 2021
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)
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