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Dianne Nicol

Public Trust, Intellectual Property and Human Genetic Databanks: The Need to Take Benefit Sharing Seriously

Introduction

The last decade or so has seen major advances in two key areas of biomedicine: new genetic technologies, including genomics, proteomics, transcriptomics, metabolomics and the like; and stem cell technology. Both are touted as offering much promise in terms of our understanding of basic biological process and in the translation of this basic science into mainstream medical practice. But in both areas much further research must be done to realise this promise, and this hinges on the appropriate and adequate supply of essential research tools, particularly human tissue, human cells and human genetic information, which are referred to collectively here as human biological material. Tissue collections, banked cell lines and databases of genetic information, which will be referred to collectively here as human genetic databanks, are vital stores of these research tools. The people who supply the tissue, cells and genetic information to these databanks (collectively referred to here as sources) play a pivotal role in the success of this research endeavour. Hence, its success is, to a large extent, premised on the trust that sources have in it. Increasingly, entire populations of sources are being recruited to provide human genetic material for databanking; in such circumstances, individual source trust becomes synonymous with public trust.

Journal of International Biotechnology Law, Walter de Gruyter

Print ISSN: 1612-6068
Volume: 3, 05/2006
Pages: 89 - 103

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