SciDev.Net

Genomic technologies continue to transform biomedical research and are being widely used to help understand the biochemical mechanisms that underlie disease. But the rapid proliferation of genomics-based technologies - and their application in a clinical context - poses immense social and policy-making challenges.

This 'perspective' article states that until several ethical, legal and social issues are addressed by effective science policy, the potential of genomic technologies will not be fully realised. The authors argue that more widespread public debate and subsequent policy action are urgently required.

Although the article focuses largely on the US situation, it includes a useful discussion of the mechanisms by which science policy tends to develop, drawing on recent examples. The authors conclude by proposing an independent genome policy organisation, which would provide a forum for to explore public concerns and develop policy options.

This paper attempts to forecast the directions that genomics research and design will take up until 2015. Although not focusing explicitly on the developing world, it articulates some pertinent issues in an accessible, easily digestible way.

It identifies ten political, social, economic, and technical drivers of genomics over the next decade, and offers different scenarios for each. The drivers include: social attitudes; social mobilisation; demand; functionality of genomics technologies; governance of knowledge; business forces; and regulation. From a developing-world perspective, it appears likely that the more pessimistic scenarios may proliferate.

The paper implicitly highlights the contestations, differing values, and widely different contexts in which genomics research must be conducted, and how appropriate technologies are brought to the marketplace.

This report arose from a realisation of the need to clarify international intellectual property law in light of recent advances in genomics, most visibly the mapping of the human genome. It is the result of a working party convened by UNESCO in 2001.

The report hinges on the following key issues:

In 2000 the World Health Organisation (WHO) undertook a consultation exercise involving both invited experts in human genetics and staff members, to review WHO’s activities in human genetics, identify challenges and priorities for WHO, and assess the future role of the organisation in genetics.

The paper briefly outlines WHO's role as a leader in health-related issues, and emphasises its need to provide policies on human genetics quickly and decisively. It includes a short statement that underlines the importance of applying knowledge from the human genome in an ethical way, with "due regard to autonomy, justice, education, and the beliefs and resources of each nation and community".

Priority recommendations for WHO include:

The UNESCO Declaration on the Human Genome and Human Rights (1997) outlines the principle that human genome sequence information should be freely available to all countries. This report, by Sivaramjani Thambisetty, attempts to clarify what access really exists and questions to what extent national patent systems should be allowed to impinge on this international consensus.

The report discusses: