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

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22 Comments
This comment has been deemed insightful by the community.
Not an Electronic Rodent (profile) says:

Cynical?

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."

Maybe I’m just being cynical, but I assume the Telegraph’s quote came directly from the health secretary’s talking points and given the government’s efforts over the last decade plus to turn the NHS into the same nightmare clusterf*ck as the US "healthcare" system, I read that as:

"Parents can easily have their child excluded or charged more for healthcare on the basis of ‘pre-existing conditions’… Or at the very least, if we can’t utterly destroy one of the most efficient healthcare systems in the world, it’ll give us an excuse to drain some more money from it, not to mention the Home Secretary is drooling to get his hands on all that tracking data"

Wendy Cockcroft (profile) says:

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.

This comment has been deemed insightful by the community.
DannyB (profile) says:

Intentional Unintended Consequences

Back in the day of big computers, punched cards and line printers with green and white striped paper, people gradually treated anything printed on computer green-white striped paper as gospel truth. Input data might be bad. Program analyzing it might be bad. But if something comes out on the line printer, then it must be true! I read it on them intarweb tubes, so it MUST be true! Critical thinking goes out the window with the bathwater.

Your DNA was found at location X, so you MUST have been there! DNA doesn’t lie! You can’t argue with that. No possible way could your DNA be somewhere unless you were there. Guilty. Next case. Hear ye, hear ye, the automated superior court of the people is now in session.

Another risk is: GATTACA (read synopsis of the movie) It may seem like it couldn’t happen. But the incentives are there for it to happen. Gradually. Slowly. With various qualifiers and safeguards — at first.

Another risk is that some very subtle eugenics programs could start but with nice euphemistic names. (like "patriot act", or "big brother")

This comment has been deemed insightful by the community.
Anonymous Coward says:

Re: Intentional Unintended Consequences

If the gene nazis can contain themselves long enough humanity will probably fix the genetic disease problem with safe genetic engineering on willing subjects. However, often times the nazis cannot contain themselves long enough and will start sterilization/extermination programs again.

Anonymous Coward says:

Re: Giving up the game

Of course not.

Power and control waits for no-one. If you don’t grab it first, someone else will and they will use it to control you. For as far as human society has come, we still have idiots that pander to the might makes right mentality. So expect the beatings to continue, because morale will never improve*.

*: At least until they decide to make genetically engineered people who want to be abused and exploited by their "betters." If anyone not under their power is still around at that point, they’ll be too busy having a moral and ethical debate over whether or not freeing the slaves is justifiable……

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