A thrilling advance in gene science – but only if we share


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The Independent Online

The full genetic sequence of the first human genome to be decoded was one of those pivotal moments in scientific discovery. For the first time, in the deceptively simple language of the genes, we could read our genetic blueprint, which in fact is more like a digital recipe of how to make and maintain the human body.

That first genetic sequence took about 13 years of painstaking work and cost more than £2bn. The effort of sequencing the three billion “letters” of the human genome was likened to the gargantuan feat of landing a man on the Moon and the innovative brilliance of inventing the wheel.

Now, more than a decade later, Britain – or more specifically England – is poised to take on the next stage of the genomics revolution by spearheading a drive to decode 100,000 genomes of people with rare diseases and patients with cancer.

This newspaper has always supported the human genome project and we are fully behind this latest effort to understand the fundamental science that could underpin the next revolution in medicine. It is clear that we are heading for the day when everyone’s genome will be decoded and made available for medical professionals to increase their ability to diagnose and treat patients.

But we must sound a note of caution. The genomics revolution will involve a huge expansion of patient data being held on computers. This is critical for the project to proceed as there is quite simply no other way of storing, processing and analysing the vast ocean of information.

It is also true that commercial companies, rather than the government or the NHS, should be the ones to develop the diagnostic blood tests, drugs and other treatments that could come out of this work. And to do this they will need to have limited access to non-identifiable patient data.

However, those with an awareness of the history of NHS computing should realise the difficulty of delivering on promises of patient confidentiality. Genomics England bears a heavy responsibility for ensuring that patients do not suffer in any way from participating in this exciting development in the human genome.