Letter: The right to know your own genes

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The Independent Online
Sir: Tom Wilkie questions the validity and control of scientific research into human genetics ('Gods who are selling our genes', 19 August). The DTI is at present holding a consultation on an EC Commission directive on the patenting of genes. The Genetic Interest Group (which represents more than 100 voluntary organisations concerned with genetic disorders) responded that we would not support any patenting of human genes or of any technique that might make treatment unavailable through high cost or restricted use. In reply, Patrick McLoughlin states that 'it is likely that genes of unknown function will be excluded from patentability, as will genes in the human body. However, genes isolated outside the human body and of known function could be patentable.'

I write as one whose life has been affected by a genetic disorder, having watched my son die painfully from a brain tumour caused by tuberous sclerosis. If during research, using tissue taken from my son's tumour, the dysfunctional gene causing tuberous sclerosis had been isolated - outside the human body - to whom would that gene belong? To the research worker, to the Tuberous Sclerosis Association who would have funded the research, or to my son, whose body provided the material? Do we own our genes in the same way we own the product of our genes, our blood, our muscles, our metabolism? If we do, perhaps we should all be patenting our personal genes now to prevent exploitation at some later date.

Tom Wilkie also poses a rhetorical question about the relationship between researchers and those in whose name the research is done. In response, I worry not about the research being done to understand and treat serious genetic disorders, but in case a wave of anti-eugenic concerns about social issues (gay rights, ethnic minorities) unconnected with ill health could prevent cures in future.

What is needed is discussion on which dysfunctional genes should be diagnosed and treated - only those that cause ill health, those that cause sensory and physical disability, or those that cause any deviation from 'perfection'? After all, we each carry at least three dysfunctional genes.

So - to the DTI, please clarify the patenting of human genes; to those who seek to mould public opinion, please define which are health and which social issues; and to the scientists working on behalf of those whose lives have been touched by serious genetic disorders: 'More power to your test-tubes'.

Yours sincerely,


Chairwoman, Genetic Interest Group

North Leigh, Oxfordshire