Leader 

Keep taking the genes

But maintain ethical medical standards.
  
  


The following correction was printed in the Guardian's Corrections and Clarifications column, Tuesday July 8 2003

In this leader, we spoke of "supposedly fatal inherited diseases like cystic fibrosis". Cystic fibrosis, in fact, is the UK's most common life-threatening disease and affects more than 7,500 babies, children and young adults. Today the average life expectancy for someone with cystic fibrosis is around 31 years. More details at the Cystic Fibrosis Trust website.

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No one should underestimate the potential benefits of gene therapy. The promise of a personalised healthcare plan from the cradle to the grave for every individual in Britain would certainly be a huge step forward. It could result in a perfect patient diagnosis and bespoke drugs that work immediately and have no side effects. Others talk of correcting defective genes and offering cures for supposedly fatal inherited diseases like cystic fibrosis. Some of the hyperbole goes as far as to say that this new medicine will eventually be able to pinpoint a person's most probable time and cause of death. Sounds too good to be true? It probably is. There is no doubt that the new technology will eventually bring benefits - but to overestimate the immediacy of its effects would be wrong.

In fact, the benefits of genetic testing cannot be realised without a significant shift in government and public thinking. For there to be a widespread acceptance of the new technology, the government must demonstrate that the rights of the individual are being protected. The proposals to make testing of a person's DNA without consent - by "taking discarded hair or dental floss from a dustbin" - a criminal offence need to be seen to work. Ministers must also ensure genetic testing does not lead to discrimination in insurance policies. Genetic testing can spot a problem before it arises. But nobody should find themselves uninsurable or unable to get a mortgage because gene screening identified the risk of developing a disease. If this was the case, many would simply refuse to take, or disclose the results of, genetic tests. Sensibly, the government has made the case for the NHS, not private companies, to be in charge of managing health risks.

The threat is that technology not only outpaces the law but also the institutions set up to police it. The government's white paper has begun what one hopes is an intense public discussion. The distribution of health is not quite as random as once thought. Diseases result from a complex interaction between pure chance, nature and nurture. A proper debate should lead to a public understanding of the science involved and help people understand how our well-being can be improved with technology. It is clear that genetic testing, via say DNA-based diagnostics, presents the opportunity of more efficient and more cost-effective treatments. But tomorrow's medicine will only work if it is as ethical as today's.

 

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