Legal Frameworks for Benefit Sharing: From Biodiversity to Human Genomics

Abstract

The philosophical principle behind benefit sharing is simple. Those who contribute to scientific research ought to share in its benefits. This is a matter of justice. If benefit sharing does not take place, exploitation may have occurred. The term “benefit sharing” was popularized by the Convention on Biological Diversity (CBD), which was adopted at the Earth Summit in Rio in 1992. This chapter provides an overview of the key international instruments and guidelines that make provisions for benefit sharing. Legal instruments are often categorized as to whether they are binding or non-binding. With the exception of the CBD itself most benefit sharing provisions are non-binding. All other key instruments presented here – the Declaration of Helsinki, the CIOMS International Ethical Guidelines for Biomedical Research Involving Human Subjects, the HUGO Ethics Committee’s Statement on Benefit Sharing, and UNESCO’s Universal Declaration on the Human Genome and Human Rights, and Universal Declaration on Bioethics and Human Rights – are non-binding. Yet even when the law is clear and binding, compliance is not usually easily achieved. The access and benefit-sharing provisions of the CBD have been incorporated into national law in many countries world-wide, but success stories are still hard to find. It is hoped that the 2010 Nagoya Protocol to the CBD will address this shortfall for non-human biological resources. An example from Brazilian national legislation, which is discussed here, is encouraging in terms of achieving benefit sharing with those providing access to human biological resources. However at the global level, benefit sharing for human biological resources remains an unresolved and often contentious issue.