This Harvard scientist wants your DNA to wipe out inherited diseases – should you hand it over?
16th March 2019
Excerpt from Article:
“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.
There is also the danger that your genome may tell you something you never wanted to know. Middleton previously worked in the NHS as a genetic counsellor, helping families with the psychological repercussions when something such as dementia, Parkinson’s or cancer was revealed to be on the cards. ‘What does it mean to have an inherited predisposition to something really horrible, that could potentially kill you?’ she asks. And not just you – but those you love, who share many of the same genes.
Middleton notes a striking split in her research, between genetic scientists (who tend to be male), keen for everyone to embrace genomic testing with urgency; and genetic-health clinicians and counsellors (who tend to be female), saying, ‘No, I have to pick up the pieces in my clinic.’
‘Genomics can be a very useful piece of the jigsaw,’ she says, ‘but we need to get everything in proportion. There are many world crises that need to be solved before you start getting everyone’s genome sequenced.’ But to Church, it seems little could be more crucial – and it’s not a question of if everyone in the world should get sequenced, but when. ‘Watch this space,’ he says, with the smile of a man who has seen the future, and is taking us there with him.”