Donating human samples: Who benefits? Cases from Iceland, Kenya and Indonesia

Abstract

Benefit sharing involving human genetic resources is an unresolved topic. Some argue that participation in scientific research should always be altruistically motivated, which is how access to human genetic resources has historically been governed in affluent nations. However, uncritically transferring the altruism model to developing countries leads to the emergence of serious exploitation issues. This chapter illustrates the potential for exploitation and other associated ethical concerns through a discussion of three cases: The Icelandic deCODE biobank for genetic research; the sex workers from Nairobi, Kenya, whose samples are used for ongoing HIV/AIDS research; and the Indonesian government's decision to withhold virus samples from the World Health Organization in order to achieve fairer benefit sharing. Public attention is captured more easily by global pandemics, but the case of the Nairobi sex workers illustrates that the exploitation issues raised on the international stage by the Indonesian government are not limited to virus sharing. A framework for equitable access to human genetic resources is urgently needed, but in order to ensure justice, this needs to be accompanied by sustained attention to benefit sharing.