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.
Who would you trust with your bio-data?
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”:
“People who know their genome sequence could ask their partner to also undergo genome sequencing to ensure that they are not ‘genetically incompatible’ before marriage or having children. With millions of people having their genome sequenced, this could quickly develop into a socially required – or even legally enforced – standard of behaviour.”
Such concerns are legitimate and should not be lightly dismissed. However, given that gene screening technology is already a mass consumer product and that whole-genome sequencing is becoming cheaper all the time, it would appear the gene genie is already out of the bottle.
Letting the gene genie out of the bottle
The best hope for keeping it under control lies with public healthcare providers like the NHS. Plomin argues that the internal incentives of the organisation are such that it is well-placed not only to gather our data, but also to make ethical use of it. Because the purpose of the NHS is to provide healthcare free at the point of need, there is no incentive to withdraw cover from ‘bad risks’. Furthermore, and unlike a private healthcare provider, it has every incentive to reduce demand for its services by prioritising prevention.
Just how much of use comes from analysing the ‘big data’ produced by widespread DNA sequencing remains to be seen. But one of the brightest hopes is that, for certain medical conditions, we’ll be better able to identify the most at-risk parts of the population – and thus to improve the targeting of preventative measures. As well as saving money by avoiding expensive treatment further down the line, such knowledge might allow the NHS to cut down on the over-prescription of drugs.
But as valuable as the ability to target prevention would be, and Plomin makes a compelling case, it would depend on being able to match individuals to high risk genetic profiles. So while research into genetic risk can be done with anonymised data, the application of the findings to preventative healthcare would require at least some parts of the system to know who’s got what combination of risk-laden genes. Presumably this would include the recipients of the preventative interventions.
Once in possession of this knowledge, would they be required to disclose their genetic risk levels to insurers, employers and other interested parties? We already have to disclose information about known medical conditions when, say, obtaining travel insurance – so why wouldn’t the same apply to medically-relevant genetic data? That, surely, would be a good reason for leaving your genes unread.
Kiss your privacy goodbye – CCTV is just the beginning
If the British government is serious about establishing the UK as a leader in this field (and ventures like Genomics England would suggest it is) then ministers should begin by publishing a Genetic Privacy Bill setting out exactly what our rights would be in a future where DNA sequencing is commonplace.