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“你不能利用自身资源收集数据并将其开放获取”:来自非洲关于公共卫生数据共享的观点。

"You cannot collect data using your own resources and put It on open access": Perspectives from Africa about public health data-sharing.

作者信息

Anane-Sarpong Evelyn, Wangmo Tenzin, Ward Claire Leonie, Sankoh Osman, Tanner Marcel, Elger Bernice Simone

出版信息

Dev World Bioeth. 2018 Dec;18(4):394-405. doi: 10.1111/dewb.12159. Epub 2017 Jul 25.

Abstract

Data-sharing is a desired default in the field of public health and a source of much ethical deliberation. Sharing data potentially contributes the largest, most efficient source of scientific data, but is fraught with contextual challenges which make stakeholders, particularly those in under-resourced contexts hesitant or slow to share. Relatively little empirical research has engaged stakeholders in discussing the issue. This study sought to explore relevant experiences, contextual, and subjective explanations around the topic to provide a rich and detailed presentation of what it means to different stakeholders and contexts to share data and how that can guide practice and ethical guidance. A qualitative design involving interviews was undertaken with professionals working in public health institutions endowed with data (HDSS), ethics committees, and advisory agencies which help shape health research in Africa. A descriptive form of thematic analysis was used to summarize results into six key themes: (1) The role of HDSSs in research using public health data and data-sharing; (2) Ownership and funding are critical factors influencing data-sharing; (3) Other factors discourage data-sharing; (4) Promoting and sustaining data-sharing; (5) Ethical guidance structures; and (6) Establishing effective guidance. The themes reveal factors regarding the willingness or not to share and an intricate ethical system that current discourse could reflect. Many of the concerns resonate with the literature, but a whole other gamut of people and process issues; commitments, investments, careers, and the right ethical guidance are needed to realize a sustainable goal of reaching 'share' as a default.

摘要

数据共享是公共卫生领域所期望的默认做法,也是诸多伦理思考的源头。共享数据有可能成为最大、最有效的科学数据来源,但却充满了各种背景挑战,这使得利益相关者,尤其是资源匮乏环境中的利益相关者,在共享数据时犹豫不决或行动迟缓。相对而言,很少有实证研究让利益相关者参与讨论这个问题。本研究旨在探索围绕该主题的相关经验、背景和主观解释,以丰富而详细地呈现数据共享对不同利益相关者和背景意味着什么,以及它如何指导实践和伦理指引。对在拥有数据的公共卫生机构(卫生和人口监测系统)、伦理委员会以及有助于塑造非洲卫生研究的咨询机构工作的专业人员进行了涉及访谈的定性设计。采用描述性主题分析形式将结果总结为六个关键主题:(1)卫生和人口监测系统在利用公共卫生数据和数据共享进行研究中的作用;(2)所有权和资金是影响数据共享的关键因素;(3)其他因素阻碍数据共享;(4)促进和维持数据共享;(5)伦理指引结构;(6)建立有效的指引。这些主题揭示了关于是否愿意共享的因素以及当前讨论可能反映的复杂伦理体系。许多担忧与文献相符,但还有一整套关于人员和流程的问题;需要承诺、投资、职业发展以及正确的伦理指引,才能实现将“共享”作为默认做法的可持续目标。

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