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2018 ; 9
(2
): 169-176
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How to responsibly acknowledge research work in the era of big data and biobanks:
ethical aspects of the Bioresource Research Impact Factor (BRIF)
#MMPMID28948532
Howard HC
; Mascalzoni D
; Mabile L
; Houeland G
; Rial-Sebbag E
; Cambon-Thomsen A
J Community Genet
2018[Apr]; 9
(2
): 169-176
PMID28948532
show ga
Currently, a great deal of biomedical research in fields such as epidemiology,
clinical trials and genetics is reliant on vast amounts of biological and
phenotypic information collected and assembled in biobanks. While many resources
are being invested to ensure that comprehensive and well-organised biobanks are
able to provide increased access to, and sharing of biomedical samples and
information, many barriers and challenges remain to such responsible and
extensive sharing. Germane to the discussion herein is the barrier to collecting
and sharing bioresources related to the lack of proper recognition of researchers
and clinicians who developed the bioresource. Indeed, the efforts and resources
invested to set up and sustain a bioresource can be enormous and such work should
be easily traced and properly recognised. However, there is currently no such
system that systematically and accurately traces and attributes recognition to
those doing this work or the bioresource institution itself. As a beginning of a
solution to the "recognition problem", the Bioresource Research Impact
Factor/Framework (BRIF) initiative was proposed almost a decade and a half ago
and is currently under further development. With the ultimate aim of increasing
awareness and understanding of the BRIF, in this article, we contribute the
following: (1) a review of the objectives and functions of the BRIF including the
description of two tools that will help in the deployment of the BRIF, the CoBRA
(Citation of BioResources in journal Articles) guideline, and the Open Journal of
Bioresources (OJB); (2) the results of a small empirical study on stakeholder
awareness of the BRIF and (3) a brief analysis of the ethical dimensions of the
BRIF which allow it to be a positive contribution to responsible biobanking.