If your baby is born with a rare disease today, or might have one of those rare diseases, the NHS can and will already DNA sequence them to help figure out what’s wrong. When Wes Streeting “announces” every baby should have their DNA sequenced at birth, that’s not a new revelation in a gift to the Telegraph (chosen because of his leadership ambitions; here’s a free to read version or BBC).
What is new is that Government wants to sequence every newborn, all the kids who aren’t sick, because it ‘might be useful’. It’s definitely good for those who sell sequencing machines; it’s good for Palantir and Amazon who will be processing all this data, and it’s the preclude to the 10 year plan for the NHS which will move money from your human GP to prioritise AI chatbots that will always demand ever more data.
Genewatch UK have detailed resources on the sequencing process and the long history of this proposal.
DNA is yours for life, not just for one government
This will be the DNA sequence of every baby born in the country, and it will be going into the politically controlled health record in the Platform they bought from Palantir – so Labour are relying on the stability of Donald Trump and his allies (today!).
Will your kid’s DNA be as well protected as Wes Streeting’s DNA? All these records have to be kept safe and secure. Which means stopping the Americans copying it off their servers, because they always do what they say, it means UK Ministers can’t ever make a bad decision, which never happens, and it means stopping the Chinese from stealing it – do we want to still have a Secret Intelligence Service in the 2050s? Data always leaks. The UK Biobank is still vigorously defending giving half a million genetic records to eugenicists who have a startup doing designer babies. This data will be available for that research too.
The data won’t help your kid if they get sick later
If you needed one of the supposed targeted treatments, the NHS would do the tests today.
The new plan is not about curing your cancer, and it’s not even going to be used if you do get cancer. If you come down with cancer, where sequencing can be useful, your doctors will want to know your DNA sequence but they also want the sequence of your cancer, and those need to be done on the same machine ideally at the same time, and you need to be there for that anyway. Those who’ve had their cancer sequenced in the past would have it sequenced again .The argument that this’ll be so cheap to be worthwhile for newborns works here too – it’s why cancer isn’t the example, instead it’s a disease almost no one gets.
The assumption of the tech bros who have captured Wes Streeting’s vision is that health advances will flow in line with their business plan, and then no one else will ever compete with them again. It’s good for a business plan but not for the NHS.
By the end of this Parliament there’ll be a bunch of cancers that you can cure in your cat by taking them to your usual vet – it’s up to Wes Streeting whether those same cancers will also be curable in people, on the NHS, but it’s politically indefensible not to.
Sequencing baby blood spot tests
For nearly a decade the baby blood spot test cards have been retained to sequence every kid born in the last decade. If this was actually useful, they’d have done something with it. Instead they’re waiting for a moral panic to go back and pay even more money to sequence the lot. It clearly had no clinical benefit.
The Home Office will want the data as those kids start to become of interest to law enforcement and they’ll probably find the money. Once the data is sequenced, it’ll be available in your “patient passport” where parents may be quite surprised to read that “daddy” isn’t.
10 year plan
Instead of focusing on patients, Wes Streeting’s 10 year plan will be about managing you via data dependent algorithms designed by politicians not driven by doctors; decisions that mean you can’t use the NHS app unless it can copy any sensor readings off of your device that politicians want, and they’ll get shared across Government and beyond.
The “high” light of replacing your GP with a chatbot is that you can fool all of them into adding whatever you like to your medical notes, including that you should get the really fun drugs; the sort of thing a human GP wouldn’t fall for but the AIs do.
I’m sure Wes Streeting has had some great feedback on his proposals – the tech companies will love it, research will love it, it doesn’t detract from medicine, and which patient group opposes something they’re told would help treat babies. As with all patient engagement, it’s what they’re not told that can destroy a project because of the deception.