Bull Susan, Bhagwandin Niresh
The Ethox Centre and Wellcome Centre for Ethics and Humanities, University of Oxford, Oxford, UK.
South African Medical Research Council, Cape Town, South Africa.
Wellcome Open Res. 2020 Nov 16;5:270. doi: 10.12688/wellcomeopenres.16351.1. eCollection 2020.
The importance of data sharing and biobanking are increasingly being recognised in global health research. Such practices are perceived to have the potential to promote science by maximising the utility of data and samples. However, they also raise ethical challenges which can be exacerbated by existing disparities in power, infrastructure and capacity. The Global Forum on Bioethics in Research (GFBR) convened in Stellenbosch, South Africa in November 2018, to explore the ethics of data sharing and biobanking in health research. Ninety-five participants from 35 countries drew on case studies and their experiences with sharing in their discussion of issues relating to respecting research participants and communities, promoting equitable sharing, and international and national approaches to governing data sharing and biobanking. In this editorial we will briefly review insights relating to each of these three themes.
数据共享和生物样本库在全球卫生研究中的重要性日益得到认可。人们认为，此类做法有潜力通过最大化数据和样本的效用促进科学发展。然而，它们也引发了伦理挑战，而现有的权力、基础设施和能力方面的差距可能会加剧这些挑战。2018年11月，全球研究伦理论坛（GFBR）在南非斯泰伦博斯召开会议，探讨卫生研究中的数据共享和生物样本库伦理问题。来自35个国家的95名与会者在讨论与尊重研究参与者和社区、促进公平共享以及管理数据共享和生物样本库的国际和国家方法相关的问题时，借鉴了案例研究及自身的共享经验。在这篇社论中，我们将简要回顾与这三个主题相关的见解。
