19 - Benefit-sharing and biobanks

Summary

Introduction

The Human Genome Project and the related research and development activities have raised important dilemmas within a number of domains. One of the concerns that cuts across political, economic, social and ethical dimensions is the issue of justice in genetic research and in its possible applications. Benefit-sharing pertains to the distribution of benefits but also of burdens arising from the research and development activities in human genetics. It concerns the issue of what is owed to those people participating in research but also to those who might not have taken part personally but live in the same community or even population where research is undertaken. Furthermore, human genetics is part of a large technological development with universal impact and this raises concerns regarding the accessibility and availability of the results of research also on a much wider, global scale, thus linking the issue of medical ethics to that of global justice. In what follows, the concept of benefit-sharing will be examined by drawing out some conceptual issues, mostly having to do with the justificatory basis for benefit-sharing.

Dissecting the concept

Although the debate on benefit-sharing is recently much linked to the human genome research, the subject was a significant issue for some time before the prominence of human genetics. Various international documents have stressed the importance of the concept in principle: for example, the International Covenant on Economic, Social and Cultural Rights, article 15(1)(b), states: ‘The States Parties to the present Covenant recognize the right of everyone to enjoy the benefits of scientific progress and its applications.