J 2018

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

HOLUB, Petr, Florian KOHLMAYER, Fabian PRASSER, Michaela Theresia MAYRHOFER, Irene SCHLUNDER et. al.

Basic information

Original name

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

Authors

HOLUB, Petr, Florian KOHLMAYER, Fabian PRASSER, Michaela Theresia MAYRHOFER, Irene SCHLUNDER, Gillian M. MARTIN, Sara CASATI, Lefteris KOUMAKIS, Andrea WUTTE, Lukas KOZERA, Dominik STRAPAGIEL, Gabriele ANTON, Gianluigi ZANETTI, Osman Ugur SEZERMAN, Maimuna MENDY, Dalibor VALÍK, Marialuisa LAVITRANO, Georges DAGHER, Kurt ZATLOUKAL, GertJan B. VAN OMMEN and Jan-Eric LITTON

Edition

Biopreservation and Biobanking, NEW ROCHELLE, MARY ANN LIEBERT, INC, 2018, 1947-5535

Other information

Language

English

Type of outcome

Článek v odborném periodiku

Field of Study

10201 Computer sciences, information science, bioinformatics

Country of publisher

United States of America

Confidentiality degree

není předmětem státního či obchodního tajemství

References:

Impact factor

Impact factor: 1.362

UT WoS

000423127500001

Keywords in English

FAIR (Findable, Accessible, Interoperable, and Reusable) principles; provenance information management; privacy protection; open science; quality; incentives
Změněno: 28/5/2019 18:55, doc. RNDr. Petr Holub, Ph.D.

Abstract

V originále

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.