In the past decade, there has been an increase in the number of international research collaborations involving developed and developing countries. A key feature of these collaborations is the exportation  of human tissues, including blood and its derivatives (DNA samples, serum, etc) from developing countries for analysis and the creation of biobanks in developed countries for future use, especially for genetic  studies of human disease. Arguments made in favour of human tissue export points to, among other things, the lack of necessary technology and laboratory infrastructure in the developing world to handle large datasets.

This trend raises important ethical issues related to informed consent, confidentiality, benefit-sharing, and concerns about specific risks related to biopiracy and commodification of human genetic identity. There are also concerns that researchers that ultimately handle these exported samples may not recognise the cultural  values, understanding and beliefs that were important in the process of sample collection. This study will explore the ethical issues related to the export, storage and future use of human tissues from developing countries.

The objectives are:

•To examine existing models/guidelines/frameworks (beyond informed consent) on tissue exportation in Africa.

•To explore the perspectives of relevant stakeholders (gatekeepers (community representatives), researchers, ethics committees, policymakers) on human tissue exportation with particular focus on future use.

•To develop and propose a framework for engaging local communities in the deliberations about tissue exportation and their future use.

•To develop a model for fair benefit-sharing agreements with communities

This research will be conducted in two research sites in Africa: (Navrongo, Ghana and Kilifi, Kenya). Interviewees will be representatives of key stakeholders involved in the research endeavour, including local community representatives(gatekeepers), researchers in collaborative research (both local and international), members of ethics committees and relevant policymakers in selected African countries.

For more information about this project contact paulina.tindana@ethox.ox.ac.uk