Letter: Patents and cures for genetic disease

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Sir: So why do those people whose bodies are potentially affected by genetic disease want tests and therapies? Because conventional medicine has had little to offer so far. And when did you last take a medicine that had not been commercially developed? Aromatherapy and herbal remedies spring to mind, but a visit to your local chemist will show that these also are now being manufactured by pharmaceutical companies. Doctors are naturally concerned about the cost of the tests to their restricted budgets, but realistically the alternative is no tests or therapies being developed at all.

They should be discussing now with the Department of Health how to provide these tests when they become available, not preventing their development.

I share and respect the misgivings many people have about the inevitable changes genetic research will bring to the way we think about life in moral, ethical and biological contexts. But for those who, like myself, watched a child or relative suffer and die when there was nothing present medicine could offer, regulation of future knowledge is what is wanted, not prohibition.

We do not wish to become regarded as an endangered sub-species, repeating the pain over generations, but we need the support of the rest of humanity to achieve this.


Tuberous Sclerosis Association

North Leigh