Enhancing Reuse of Data and Biological Material in Medical Research: From FAIR to FAIR-Health
Language English Country United States Media print-electronic
Document type Journal Article, Review
Grant support
001
World Health Organization - International
PubMed
29359962
PubMed Central
PMC5906729
DOI
10.1089/bio.2017.0110
Knihovny.cz E-resources
- Keywords
- FAIR (Findable, Accessible, Interoperable, and Reusable) principles, incentives, open science, privacy protection, provenance information management, quality,
- MeSH
- Biological Specimen Banks * organization & administration standards MeSH
- Databases, Factual standards MeSH
- Confidentiality standards MeSH
- Humans MeSH
- Information Dissemination methods MeSH
- Guidelines as Topic MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Review MeSH
The known challenge of underutilization of data and biological material from biorepositories as potential resources for medical research has been the focus of discussion for over a decade. Recently developed guidelines for improved data availability and reusability-entitled FAIR Principles (Findability, Accessibility, Interoperability, and Reusability)-are likely to address only parts of the problem. In this article, we argue that biological material and data should be viewed as a unified resource. This approach would facilitate access to complete provenance information, which is a prerequisite for reproducibility and meaningful integration of the data. A unified view also allows for optimization of long-term storage strategies, as demonstrated in the case of biobanks. We propose an extension of the FAIR Principles to include the following additional components: (1) quality aspects related to research reproducibility and meaningful reuse of the data, (2) incentives to stimulate effective enrichment of data sets and biological material collections and its reuse on all levels, and (3) privacy-respecting approaches for working with the human material and data. These FAIR-Health principles should then be applied to both the biological material and data. We also propose the development of common guidelines for cloud architectures, due to the unprecedented growth of volume and breadth of medical data generation, as well as the associated need to process the data efficiently.
BBMRI at and Medical University Graz Graz Austria
BBMRI cz and Masaryk Memorial Cancer Institute Brno Czech Republic
BBMRI gr and Foundation for Research and Technology Hellas Heraklion Greece
BBMRI IARC and International Agency for Research on Cancer Lyon France
BBMRI it and Universita degli Studi di Milano Bicocca Milano Italy
BBMRI mt and University of Malta Msida Malta
BBMRI nl and Leiden University Medical Center Leiden Netherlands
BBMRI pl and University of Łódź Łódź Poland
BBMRI pl and Wroclaw Research Centre EIT Wroclaw Poland
BBMRI tr and Acibadem University Istanbul Turkey
Helmholtz Zentrum München Munich Germany
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