The NHS has engaged in the great gene race too. At the end of January, Health Secretary Matt Hancock announced the launch of a ‘genomic volunteering’ scheme, in which the NHS will sell a DNA-sequencing service to healthy people who want to predict their risk of developing various conditions, including cancer and dementia (and offer it for free to people with serious conditions).
Their anonymised data will be shared with researchers at Genomics England, owned by the Department of Health and Social Care, which has already sequenced 100,000 whole genomes from patients with rare diseases and common cancers – making it the world’s largest genomic database with associated clinical data. It is not yet known when the service will start or how it will work, beyond a plan to sequence five million genomes in the UK in the next five years.
‘Every genome sequenced moves us a step closer to unlocking life-saving treatments,’ Hancock has said. Critics claim it breaches a core principle of the NHS – creating a two-tier system, whereby people who can afford to can access services that are denied to others. That said, many geneticists predict that costs will tumble as uptake rises, meaning DNA testing of babies could eventually be as normal as the heel-prick test (for nine congenital conditions, cystic fibrosis among them).
‘But behind each of those sequences is a person,’ points out Dr Anna Middleton, head of society and ethics research at the Wellcome Genome Campus and Sanger Institute, near Cambridge. And the combination of genetic data with clinical and lifestyle history adds up to a ‘very, very, very valuable data set’. So valuable, ‘You start to think, where could that data end up?’
Last year, Genomics England confirmed it had fought off multiple foreign hacker attacks; by comparison, worrying about what Facebook is doing with your friends list is small-fry.