Health Minister Wants Full-Genome Sequencing Of Every Newborn Child In UK To Become Routine

from the knowing-too-much dept

The cost of sequencing every DNA "letter" in a human genome has fallen faster than Moore's Law, from around $100 million in 2001, to under $1,000 today (although some say the overall cost in a clinical context is higher). This brings with it the prospect of routinely carrying out full-genome sequencing for everyone. That's precisely what Matt Hancock, the UK's Health Secretary, has said he wants to see as a part of the country's National Health Service (NHS), reported here by The Telegraph:

"My ambition is that eventually every child will be able to receive whole genome sequencing along with the heel prick test [a basic test for genetic conditions]," he told the conference.

"We will give every child the best possible start in life by ensuring they get the best possible medical care as soon as they enter the world. Predictive, preventative, personalised healthcare -- that is the future of the NHS -- and whole genome sequencing and genomics is going to play a huge part in that," he said.

Creating a massive database of near-complete genomes will probably ring alarm bells for Techdirt readers. Just recently, US police have started obtaining warrants to search entire DNA databases, even of people who opted out of allowing law enforcement to access their genomic data. That's despite the fact that "touch DNA" is mostly guesswork, and that crime lab testing is beset with problems. Moreover, a mistaken belief that DNA is infallible can lead to innocent people being charged with serious crimes like murder.

It's true that DNA can be a very powerful tool for solving crimes by finding distant matches in publicly-available genetic data, and then constructing family trees to narrow down the possible suspects. But that fact also exposes why routinely obtaining someone's DNA, as Hancock proposes for newborns in the UK, has an important impact on anyone related to the person whose whole genome is sequenced.

Even when DNA databases of a complete population are not set up for the purposes of mass surveillance, as Kuwait proposed (but then scaled back), and as China is implementing in Xinjiang as a way of controlling the local Uyghur population, there are other serious issues that need to be considered.

For example, the Telegraph article notes that full-genome sequencing of newborns means "parents could choose to be alerted to the fact their child faced heightened risks of specific diseases, and allow the NHS to offer more tailored treatment." But would parents necessarily welcome knowing that their child is more likely than the average individual to develop some serious genetic condition at some point in their lives? And what about if that condition had no treatment at present? What is gained by knowing of the risk? Might parents, and later the affected children themselves, find that knowledge almost too much to bear -- a genetic sword of Damocles hanging over them all their lives? Equally, parents might feel guilty if they don't ask for this information, which could allow for earlier treatment of diseases.

There's no doubt that full-genome sequencing will have a major impact on medicine in the decades to come, and offers the hope of more targeted and more effective medicines for many conditions. But for the benefits to be realized, doctors and genetic counselors will need to find effective ways to talk to people about what the detailed but probabilistic information revealed by their complete genomes will mean for their future health and treatments. Only then can we make informed decisions that enhance our well-being and happiness.

Follow me @glynmoody on Twitter, Diaspora, or Mastodon.

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Filed Under: babies, dna, health minister, matt hancock, nhs, privacy, surveillance, uk, uk health secretary

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  1. icon
    Wendy Cockcroft (profile), 8 Nov 2019 @ 6:06am

    The Nasty Party

    I'm trying to work out how any sane and reasonable person could vote Tory.

    Boris Johnson is a threat to the economy with his disastrous pro-Brexit stance and to national security because he can't keep his gob shut. He's currently withholding a report on Russian interference in the Referendum until after the upcoming general election.

    Meanwhile, critics of Jeremy Corbyn forget that if he did come to power he wouldn't have the authority to implement any of his policies unless he could get them through Parliament -- and he's unlikely to win a big enough majority to make that happen. Even if Labour win with enough of a majority to form a government, it's riven with splits and its right wing has mostly sided with the Tories. In fact, Corbyn even whipped his MPs to vote for Tory Brexit policy. The point is, not all of them are as far to the left as he is, and his policies are mainstream for Europe, not madly left wing. If Corbyn is a threat at all to national security, apparently it's because he's against nuclear weapons (he wouldn't be able to get rid of them) and won't agree to either regime change in Middle Eastern countries (presumably with an eye on the Iraq debacle) or to stop sending aid to Al Qaeda.

    The country would benefit from and end to austerity because we need demand in a consumer economy and before anyone hops in to claim the Tories are fiscally responsible, I should point out that both the deficit and the national debt have risen since they came to power and they love to waste other people's money. They're idiots.

    Now Matt Hancock wants to waste our money on sequencing the genome of every newborn -- how long till this is compulsory for every passport applicant? Now imagine the abuses. No thanks. While I'm basically conservative there's no way my conscience will allow me to vote Tory in this election. The NHS is not safe in their hands. Nor is our economy -- or our security and privacy. Anyone who votes in the upcoming election needs to bear this in mind.

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