Benefit-sharing, Biobanks and Vulnerable Populations

Abstract

With the rapid development of tools for DNA extraction, there has been a notable increase in the establishment of small and large biobanks for the purpose of research. Combined with highly efficient methods for DNA analysis, biobanks provide a large scale tool for biomedical research. As biobanks continue to be established worldwide, new and recurring ethical issues are put forward in the international arena. One such topic is benefit-sharing, which offers ways to address, on a small scale, existing global inequities, especially those related to the benefits and burdens of medical research. This paper attempts to raise some of the concerns related to the development of benefit-sharing frameworks, particularly in the context of vulnerable populations, who typically suffer from the inequities that benefit-sharing intends to address. The discussion is based implicitly and explicitly on the following five questions: Who are the vulnerable? How can benefitsharing be justified? What exactly should be shared? When is benefit-sharing appropriate? Why are certain benefit-sharing schemes being offered?

Emphasis is put on the importance of the context in which benefits are shared. Furthermore, obstacles and complexities of benefit-sharing are illustrated with regard to the findings of a qualitative study. The paper concludes by looking at biobanks in connection with global justice in the field of health research.