The gene dilemma: Society agonises in race to keep up with laboratory: In the last of a three-part series, 'Independent' writers consider the moral issues raised by applying genetic research to humans

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The Independent Online
THROUGHOUT Europe, there is a massive popular demand for tight government control over the applications of genetic engineering to humans.

An opinion poll, published by the European Commission, found that more than 85 per cent of all European citizens believed that their governments should intervene to regulate the new genetics. Feelings ran highest in Denmark and the Netherlands, whereas concerns were lowest in Portugal, Italy and Spain.

The survey of 12,800 people was carried out last year to gauge public acceptance of biotechnology and human genetic treatments.

In the United States, Congress is worried about the dollars 3bn ( pounds 2.1bn) research programme, the Human Genome Project, which will tease out and analyse every gene in the human blueprint. Congressmen want the US government to set up an independent commission to oversee the ethical, legal and social implications (ELSI) of this 15-year project.

More than dollars 20m ( pounds 13.8m) of the US taxpayers' money has already been spent on investigating these issues - making it the most generously funded philosophy research programme in history.

But Congress believes the money has gone on setting up conferences for moral philosophers to talk to each other. ELSI, according to one report, does 'not have the ability to present policy recommendations to the nation in an effective manner'.

Congressional pressure may lead to the re-establishment of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical Research, which was abruptly disbanded by President Reagan in the early 1980s.

In Britain, the Nuffield Council on Bioethics last month called for the Government to set up a 'central co- ordinating body' to oversee genetic testing and to monitor how it is implemented in the NHS, insurance industry and workplace.

The council sees testing for genetic disease as the first practical issue which society will have to face. It warned against the threat of social stigma and abuse that could result from widespread genetic screening.

In its report, the Nuffield Council called for safeguards by government, doctors and nurses, employers and the insurance industry to protect individuals and their families against adverse effects of genetic screening. Among potential problems are invasions of privacy, the misuse of confidential information, and the possibilities of eugenic abuse (improvement through selective breeding) in the future.

There are only a few conditions - such as cystic fibrosis - where it might be effective to treat inherited disease by gene transplants. For the next decade or so, the emphasis will be on pre-symptomatic diagnosis of conditions: parents at risk of having a child with cystic fibrosis can already have the foetus tested.

But some issues are less clear: the geneticists hope within months to discover the gene which causes familial breast cancer - it accounts for about 5 per cent of all cases.

A woman who carries the gene may give birth to a daughter who will have 30 years or more of happy and fulfilling life before the effect of the gene kicks in. Such a mother may face a decision on whether to abort the foetus.

Eventually, the genes which influence such things as propensity to heart disease or other cancers will become known. But genetic diagnoses of these conditions will be probabilities: parents may face the choice of aborting a child because it has a 50 per cent chance of dying from heart disease at the age of 50.

The new genetics present society with three questions:

Who has the right to know what is in someone's genes?

Who has the right to ownership of genetic information?

Who has the right to act on genetic information?

Nuffield set up its bioethics council at the behest of researchers and doctors worried that society was not keeping up with the laboratory. The researchers were rebuffed when they urged the Government to set up a Royal Commission. The council has performed groundbreaking work, but is a privatisation of morality.

For there is a fourth question: Who is to decide the answers to the first three?

Tom Wilkie's book Perilous Knowledge on the ethics of the new genetics is published by Faber & Faber at pounds 14.99.