Ethics of Data Sharing and Biobanking in Health Research

The Global Forum on Bioethics in Research (GFBR) will hold a two-day meeting in Cape Town, South Africa, on 13-14 November 2018 on the theme of ‘the ethics of data sharing and biobanking in health research’.

Data sharing and biobanking are increasingly being used to support global health research. These approaches have the potential to increase scientific efficiency by maximising the utility of data and samples. However, they also give rise to ethical challenges which are made harder in low- and middle-income country (LMIC) settings due to existing disparities in infrastructure and knowledge. Debate is required on how to foster data sharing and biobanking practice that is equitable and respectful to the interests of those involved, including participants, communities, researchers and funders. These issues are particularly acute in global collaborative research which can give rise to concerns about ownership, control, and sustainability, particularly in LMIC settings. Ultimately if research is to be carried out efficiently, effectively and ethically, there is a need for robust governance practices and for more discussion as to what these processes should be.

As part of the upcoming meeting, the GFBR is seeking case studies that bring attention to key ethical issues that have emerged when conducting data sharing and biobanking in LMIC settings and proposals to participate in a session on guidance and policy issues.

The GFBR is also seeking participants to attend the meeting, with places awarded on a competitive basis.

Full details on how to make an application are available in this notice and the background paper provides further details on the meeting theme. Details of the call are also available on the GFBR website. The deadline for applications is 21.00 BST on 16th May 2018.