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在大数据和生物样本库时代如何负责任地认可研究工作:生物资源研究影响因子(BRIF)的伦理问题。

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

作者信息

Howard Heidi Carmen, Mascalzoni Deborah, Mabile Laurence, Houeland Gry, Rial-Sebbag Emmanuelle, Cambon-Thomsen Anne

机构信息

Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.

UMR 1027, Inserm, Université Toulouse III-Paul Sabatier, Toulouse, France.

出版信息

J Community Genet. 2018 Apr;9(2):169-176. doi: 10.1007/s12687-017-0332-6. Epub 2017 Sep 25.

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.

摘要

目前,流行病学、临床试验和遗传学等领域的大量生物医学研究依赖于生物样本库中收集和整合的大量生物和表型信息。尽管投入了许多资源来确保全面且组织良好的生物样本库能够增加对生物医学样本和信息的获取与共享,但在这种负责任且广泛的共享方面仍存在许多障碍和挑战。与本文讨论相关的一个障碍是,由于缺乏对开发生物资源的研究人员和临床医生的适当认可,导致生物资源的收集和共享受到阻碍。事实上,建立和维持一种生物资源所投入的努力和资源可能是巨大的,而且这项工作应该易于追踪并得到适当认可。然而,目前还没有这样一个系统能够系统且准确地追踪并将认可归因于从事这项工作的人员或生物资源机构本身。作为解决“认可问题”的开端,大约十五年前提出了生物资源研究影响因子/框架(BRIF)倡议,目前该倡议仍在进一步发展。为了最终提高对BRIF的认识和理解,在本文中,我们做出了以下贡献:(1)对BRIF的目标和功能进行综述,包括对有助于BRIF实施的两个工具的描述,即《期刊文章中生物资源的引用》(CoBRA)指南和《生物资源开放期刊》(OJB);(2)关于利益相关者对BRIF认知的一项小型实证研究结果;(3)对BRIF伦理维度的简要分析,这使其能够为负责任的生物样本库做出积极贡献。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/dda9/5849702/6ace016ea59f/12687_2017_332_Fig1_HTML.jpg

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