Enhancing Reuse of Data and Biological Material in Medical Research: From FAIR to FAIR-Health

被引:58
|
作者
Holub, Petr [1 ]
Kohlmayer, Florian [2 ]
Prasser, Fabian [2 ]
Mayrhofer, Michaela Th. [1 ]
Schluender, Irene [1 ,3 ]
Martin, Gillian M. [4 ,5 ]
Casati, Sara [6 ,7 ]
Koumakis, Lefteris [8 ,9 ]
Wutte, Andrea [1 ]
Kozera, Lukasz [10 ,11 ]
Strapagiel, Dominik [10 ,12 ]
Anton, Gabriele [13 ]
Zanetti, Gianluigi [6 ,14 ]
Sezerman, Osman Ugur [15 ,16 ]
Mendy, Maimuna [17 ,18 ]
Valik, Dalibor [19 ,20 ]
Lavitrano, Marialuisa [6 ,7 ]
Dagher, Georges [21 ]
Zatloukal, Kurt [22 ,23 ]
van Ommen, GertJan B. [24 ,25 ]
Litton, Jan-Eric [1 ]
机构
[1] BBMRI ERIC, Neue Stiftingtalstr 2-B-6, A-8010 Graz, Austria
[2] Tech Univ Munich, Munich, Germany
[3] TMF eV, Berlin, Germany
[4] BBMRI Mt, Msida, Malta
[5] Univ Malta, Msida, Malta
[6] BBMRI It, Milan, Italy
[7] Univ Milano Bicocca, Milan, Italy
[8] BBMRI Gr, Milan, Italy
[9] Fdn Res & Technol Hellas, Iraklion, Greece
[10] BBMRI Pl, Wroclaw, Poland
[11] Wroclaw Res Ctr EIT, Wroclaw, Poland
[12] Univ Lodz, Lodz, Poland
[13] Helmholtz Zentrum Munchen, Munich, Germany
[14] CRS4, Pula, Italy
[15] BBMRI Tr, Istanbul, Turkey
[16] Acibadem Univ, Istanbul, Turkey
[17] BBMRI IARC, Lyon, France
[18] Int Agcy Res Canc, Lyon, France
[19] BBMRI Cz, Brno, Czech Republic
[20] Masaryk Mem Canc Inst, Brno, Czech Republic
[21] INSERM, Paris, France
[22] BBMRI At, Graz, Austria
[23] Med Univ Graz, Graz, Austria
[24] BBMRI Nl, Leiden, Netherlands
[25] Leiden Univ, Med Ctr, Leiden, Netherlands
关键词
FAIR; (Findable; Accessible; Interoperable; and Reusable) principles; provenance information management; privacy protection; open science; quality; incentives; BARRIERS;
D O I
10.1089/bio.2017.0110
中图分类号
Q2 [细胞生物学];
学科分类号
071009 ; 090102 ;
摘要
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.
引用
收藏
页码:97 / 105
页数:9
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