The genes of identical twins are the resource base for the most effective studies designed to isolate nature from nurture, genetic influences from environmental factors. Yesterday more than a thousand twins gathered for a party hosted by doctors researching the genetic causes of a range of chronic diseases. The researchers are aiming for 5,000 participants. This could be a hugely valuable data bank.
Identical twins share 100 per cent of their genes. If they live apart it should be possible to work out whether any illnesses they suffer are the result of their lifestyles or their genetic inheritance. This in turn should help to develop cures.
The savings to the health service could be huge. Already researchers at St Thomas's hospital in London have identified genetic factors which might make women's bones more brittle in middle age, a condition known as osteoporosis. Two million people in the UK, 80 per cent of them women, suffer from osteoporosis. One in three women and one in 12 men have a fracture by the age of 70. The annual cost of the disease to the health service is estimated at pounds 750m.
The St Thomas's team wants to move on to study obesity, heart disease, high blood pressure and asthma. So the potential health benefits of this data bank may be vast. But so too might be the profits of the genetics companies which exploit the research. The rights to one gene that is thought to influence obesity were sold last year for $70m. The value of the St Thomas's data bank could run to hundreds of millions of pounds. The rights to exploit the data bank have been sold to a company called Gemini International, whose headquarters are in the British Virgin Islands.
To free-marketeers, the exploitation of such a gene data bank might not pose any troubling questions. Private-sector companies are taking a risk by investing in the research; they should reap the rewards. But this research is not quite like other pharmaceuticals research. Human beings are not just being used to test drugs; their living matter is being developed to help drugs. The ownership of the treatments developed by genetic research is hugely controversial.
But this is no simple story of private-sector exploitation, far from it. The St Thomas's team turned to private investment because they had to; public-sector grants had dried up. Several leading geneticists have left Britain in the past year because there is not enough money to fund their research; private finance is the only way to get their results into the international marketplace.
The issue of who owns the rights to genetic discoveries will not go away; it will become more pressing. A review of British legislation would be helpful but only up to a point: this is an international issue. Rulings by the International Court of Justice, the European Patent Convention or indeed the General Agreement on Tariffs and Trade are needed to help clear it up before the "gene prospectors" give the industry a bad name.Reuse content