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Cited by 59Research Data Management PracticesEthics in Clinical ResearchData Analysis and Archiving

Data Access Committees

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Cheah, Phaik Yeong, Piasecki, Jan·2020·BMC Medical Ethics
DOI 10.1186/s12910-020-0453-zPMC PMC6998828
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Abstract

Background: Sharing de-identified individual-level health research data is widely promoted and has many potential benefits. However there are also some potential harms, such as misuse of data and breach of participant confidentiality. One way to promote the benefits of sharing while ameliorating its potential harms is through the adoption of a managed access approach where data requests are channeled through a Data Access Committee (DAC), rather than making data openly available without restrictions. A DAC, whether a formal or informal group of individuals, has the responsibility of reviewing and assessing data access requests. Many individual groups, consortiums, institutional and independent DACs have been established but there is currently no widely accepted framework for their organization and function. Main text: We propose that DACs, should have the role of both promotion of data sharing and protection of data subjects, their communities, data producers, their institutions and the scientific enterprise. We suggest that data access should be granted by DACs as long as the data reuse has potential social value and provided there is low risk of foreseeable harms. To promote data sharing and to motivate data producers, DACs should encourage secondary uses that are consistent with the interests of data producers and their own institutions. Given the suggested roles of DACs, there should be transparent, simple and clear application procedures for data access. The approach to review of applications should be proportionate to the potential risks involved. DACs should be established within institutional and legal frameworks with clear lines of accountability, terms of reference and membership. We suggest that DACs should not be modelled after research ethics committees (RECs) because their functions and goals of review are different from those of RECs. DAC reviews should be guided by the principles of public health ethics instead of research ethics. Conclusions: In this paper we have suggested a framework under which DACs should operate, how they should be organised, and how to constitute them.

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  • Consent for data sharing can be obtained from trial participants upon enrolment, whereas approval for data sharing is typically obtained from research ethics committees and data access committees.

    “Consent for data sharing can be obtained from trial participants upon enrolment, whereas approval for data sharing is typically obtained from research ethics committees and data access committees.90”

    From SPIRIT 2025 explanation and elaboration: updated guideline for protocols of randomised trials (2025) · cites this paper as [90]

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Research works printed but not linked: 2

  1. [48]Holland S Public health ethics 2015 2 Cambridge Polity Press
  2. [51]Mahidol Oxford Tropical Medicine Research Unit MORU tropical network data sharing policy 2016

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Authors
Cheah, P. Y., & Piasecki, J.
Affiliations
  • Mahidol University (TH)
  • Jagiellonian University (PL)
Corresponding author
Cheah, Phaik Yeong
ORCID
Venue
BMC Medical Ethics
Publisher
Springer Science and Business Media LLC
Published
2020-02-03
Volume
21
Issue
1
Pages
12-12
ISSN
1472-6939 (ISSN-L)
DOI
10.1186/s12910-020-0453-z
PMC
PMC6998828
OpenAlex
W3006005915
Cited by
59
References
50
Citations by year
2026: 8 · 2025: 7 · 2024: 16 · 2023: 14 · 2022: 5 · 2021: 6 · 2020: 2 · 2018: 1
FWCI
6.36
Type
journal article
Language
en
Open access
Licence
Locations
  • BMC Medical Ethics (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Homo Politicus (Academy of Humanities and Economics in Lodz) (submittedVersion, cc-by)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
  • Greater South Information System
Funders
Wellcome Trust (096527, 106698/Z/14/J, 106698/Z/14/Z)
Topics
  • Physical Sciences › Computer Science › Information Systems › Research Data Management Practices
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Social Sciences › Sociology and Political Science › Data Analysis and Archiving
Keywords
data access committees, secondary use of health data, data reuse, public health ethics, research ethics committees, confidential information protection, data producers
MeSH terms
Confidentiality, Humans, Social Responsibility, Access to Information, Ethics Committees, Research, Ethics, Research, Information Dissemination

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