3,000,000,000 answers pose a lot of questions

The Ethical Issues
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The Independent Online

Completion of a rough draft of the complete human genetic sequence is a very significant scientific milestone. The international Human Genome Project has always recognised that expansion of genetic knowledge will have important social and ethical dimensions.

Completion of a rough draft of the complete human genetic sequence is a very significant scientific milestone. The international Human Genome Project has always recognised that expansion of genetic knowledge will have important social and ethical dimensions.

Most countries supporting the project have funded substantial research in ethical, legal and social issues. This has led to public debate about the potential pitfalls of advancing genetic knowledge. Issues such as privacy of genetic information, and its potential use in discriminating against some people, have been widely discussed. Those debates need to broaden and continue.

Major milestones are a time for reflection. For me, the first ethical imperative is to make good use of this information on the genome, which is the common heritage of all people, for the benefit of all people. Most of the world's illness and premature death is in poor countries, from potentially preventable diseases. Genetics has a part to play in understanding disease resistance, and in developing new vaccines and new drugs, but simpler and older measures of hygiene and pest control are more clear-cut and direct.

If limited research resources are increasingly diverted into exploring the diseases that affect only rich countries today (although they will soon start to affect poor countries) and ignore the majority of the world's immediate problems, it will, for me, be a very negative outcome.

Even for rich countries, there is a real possibility of many new treatments emerging, each with some benefit for illnesses but at prices we cannot readily afford. To some extent pricing will be influenced by the strength of the monopolies granted by patents on gene-based inventions.

Patents encourage essential investment, but very broad-ranging patents for work that only describes the products of nature (the gene or the protein) without adding sufficient value, encourage wasteful speculation, and drive up eventual costs to consumers. Many argue that this will not happen, that the international patent system is robust enough to absorb these developments in biology.

I hope governments will show more evidence that they are alert to these issues, and are actively guarding our interest, rather than simply hoping it will all work out in the end.

Having three billion letters of genetic sequence available is not itself immediately useful to sick people. It is a research tool that can only proceed if patients are prepared voluntarily to participate. That will need clear rules on privacy and confidentiality, so that participants know exactly what their information will be used for, and who will have access to it. Britain has a good record in such research, and we must build on that to be sure the public and scientists move forward together - or we will all be the losers.

To be certain that a lot of people are aware of these problems, and to have open discussion through the media and the democratic process, is the way a free society reaches a consensus. Knowing more of how our bodies work and what goes wrong with them offers massive opportunity for good. We must use it, and shape its use, to keep the good and avoid the pitfalls.

Professor Martin Bobrow is head of Medical Genetics at the University of Cambridge.

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