Title: How to responsibly acknowledge research work in the era of big data and biobanks: Ethical aspects of the Bioresource Research Impact Factor (BRIF)

Heidi Howard 1 Deborah Mascalzoni 1, 2 Laurence Mabile 3 Gry Houeland 2 Emmanuelle Rial-Sebbag 3 Anne Cambon-Thomsen 3, 4
1 Centre for Research Ethics and Bioethics [Uppsala, Sweden]
2 Eurac Research - Institute for Biomedicine [Bolzano, Italy]
3 LEASP - Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps
4 Plateforme sociétale genotoul [Toulouse]
Abstract : 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.
Keywords : biobank ethics academic recognition bioresource sharing research impact BRIF
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Submitted on : Friday, January 11, 2019 - 3:02:48 PM
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Heidi Howard, Deborah Mascalzoni, Laurence Mabile, Gry Houeland, Emmanuelle Rial-Sebbag, et al.. Title: How to responsibly acknowledge research work in the era of big data and biobanks: Ethical aspects of the Bioresource Research Impact Factor (BRIF). Journal of Community Genetics, Springer, 2017, ⟨10.1007/s12687-017-0332-6⟩. ⟨inserm-01978434⟩

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