Access and use of human tissues from the developing world: ethical challenges and a way forward using a tissue trust

To a considerable extent, the failure to adequately engage host communities, the opacity of informed consent, and the lack of fair benefit-sharing have played a significant role in eroding trust. These ethical considerations are central to biomedical research in low to middle income countries and failure to attend to them can inadvertently contribute to exploitation and erode trust. A 'tissue trust' may be a plausible means for enabling access to human tissues for research in a manner that is responsive to the ethical challenges considered.Preventing exploitation and restoring trust while simultaneously promoting global health research calls for innovative approaches to human tissues research. A tissue trust can reduce the risk of exploitation and promote host capacity as a key benefit.Access and use of human tissues from the developing world is a significant challenge for scientists engaged in global health research. Given the troubled history of 'scientific-imperialism' and 'biocolonialism' in cases of exploitation in research involving vulnerable populations [1-6], many communities and governments in low-to-middle income countries (LMICs) are understandably reluctant to trust foreign researchers and permit access to human tissues. The refusal of the Indonesian government to share its tissue samples of the H5N1 virus with the international community is perhaps the most acute recent example [7]. The biomedical literature is filled with numerous examples of researchers who were welcomed into a community, conducted their research, and then left without returning any meaningful benefit to the studied population. In some cases, researchers appropriated human tissues from the host community without obtaining proper informed consent. Consider:"[B]lood samples were extracted from some members of the Hagahai, a small group of hunter-gatherers living in an inaccessible mountain range in Papua New Guinea. The researcher involved told the group that she wanted to see a 'binit