The ethics of data sharing and biobanking in health research
peter.suber's bookmarks 2020-11-29
Abstract: 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.