Last month, I wrote about the remarkable UK Biobank – a treasure trove containing the medical and genetic details of half-a-million volunteers. Because the database is open source, the UKB has become a vital resource for researchers around the world – further strengthening the UK’s position in the biomedical sciences.
I went on to argue that Britain’s NHS – a single organisation that gathers valuable medical information on a vast scale – was well-placed for this new era of data-driven medical research. What I should have added is that the NHS (or at least the Department of Health) is very much on the case. Only the other week came the announcement that Genomics England, a company owned by the DoH, is offering to sequence your DNA for a fee – reported to be in the region of £500.
If that seems a little on the steep side, the geneticist Robert Plomin (writing in the Spectator) provides some context. Firstly, unlike the partial service normally provided to the public by commercial gene sequencing companies, Genomics England is offering the full monty:
“…the NHS is offering to genotype nearly all (95 per cent+) of the six billion rungs in the spiral staircase of DNA, called whole-genome sequencing (WGS). That’s the DNA we inherit in the single cell with which we begin life, and it’s the same DNA in all the trillions of cells in our body.”
Secondly, it’s at a competitive price:
“When the human genome was first sequenced 15 years ago, it cost more than £1 billion. Technological advances have now brought the cost for WGS down to under £1,000… Some DTC [direct-to-consumer] companies are beginning to offer WGS with price tags beginning at about £1,500, although much of the cost depends on how analysis and interpretation is on offer. So if WGS on the NHS cost £500, this would be several times cheaper than the cheapest offer from a DTC company.”
Part of the deal is that you agree to share your (anonymised) DNA data with researchers, but you do also get a “personalised report.”
Not everyone is impressed. Writing for the Guardian, David King of Human Genetics Alert raises a number of doubts – for instance, over the usefulness of the data to the individual, the long-term robustness of anonymisation and the unfulfilled promise of human genomics:
“The story begins in 2000 with the announcement of the completion of the sequence of the human genome… As time has gone on, and the promised medical breakthroughs have largely failed to materialise, the dream that genome data will give good predictions of personal risk for common and complex medical conditions has faded. “
He also argues that “programmes of pre-conception genetic screening can be powerful drivers of eugenics”:
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