The BBC & Telegraph are trailing Wes Streeting’s technophile health plans, including genomic mapping at birth. Is this really gonna transform the NHS into a prevention service within 10 yrs, as Wes claims? For v rare genetic conditions, praps. But for the real burden of disease? Thoughts, #medsky?
I would've got the haemochromatosis diagnosis at birth as opposed to in my fifties when I was already screwed so...sure. It's the most common genetic disease in my demographic and multiple GPs missed it. So, not just useful for v rare conditions. It'd catch a lot of fertility issues early too.
I’m sorry you had that experience- I know this has been under diagnosed and is surprisingly common. Curiously, haemochromatosis does not appear to be on the list of 200 conditions they are testing for, though. Any idea why?
Hey, thanks but it's really not a big deal -it is an argument in favour of blanket genomics though. It's only a problem for a tiny ethnic group - white Irish communities with high rates of homozygosity. Also, it's only a health issue for middle aged folks. Higher priorities out there for sure.
Is Peter Thiel's Palantir still in charge of NHS databases? Anyone else see the problem here?
bsky.app/profile/caro...
Streeting is not to be trusted with anyone's postcode, let alone their genome map.
I did my genes and researched them myself. Turns out I don't process b vitamins very well and don't produce much of the enzyme that breaks down dopamine. This means I was depressed but SSRIs and SNRIs were bad for me but my only medical option. DNA testing is only useful if drs know what it means.
My MD and a genetics counselor helped tremendously. I def recommend having a genetics counselor if anyone does get tested. The information you get is overwhelming. You need an expert to help interpret it.
I wouldn't have been able to afford it and while I'm sure I missed stuff I used tools that helped me understand what I needed to know (COMT and MTHFR and more recently APOE4). The MTHFR, DNA and ancestry subreddits are a great resource.
I’ve been in those worlds enough to be familiar with what you’re talking about, and even considered some of these tests myself, but I wonder, did any of these commercial gene testing stuff actually change what you did, and your outcomes?
I did the ancestry test nearly 10 years ago and used promethease. I changed how I took b vitamins (methylcobalmin, etc) and increased choline intake and tapered off my snri. Since then I noticed I was responding weirdly to b vits and went back to Reddit, found new online tools and there's...
...been more research into MTHFR. I think covid messed up my microbiome or did something funky epigenetic wise because I can't do methylcobalmin anymore and had to taper up separate b vits (hydroxycobalmin, etc) slowly. I don't know any drs in Ireland who would have been able to help with this.
There may be other things at play too. Once I fixed one vitamin, another deficiency showed up. Sometimes it's because these things work together.
Covid messes up vitamins for sure. It depletes A and Thiamine. There is also something called methyl trapping. Not everyone does well with methylated vitamins. MAOA gene. Natural folate in leafy greens is helpful. I have MTHFR too. But there are a few genes that deal with that MTRR and MTR also.
The leafy greens part might explain why my body is picky about them now. I can't eat Pak choi amongst other veg. Vit A is 1 that came up with the genes as I don't process beta carotene very well. Need to look into methyl trapping. Thanks
I can't remember my exact profile just what is recommended and that I'm an over methylator. Supplements that used to be fine I'm now very sensitive to (like glycine/tmg). The MTR and other genes were some of the info that was new to me when I went back onto the subreddits.
Glycine lowers serotonin. It's a true journey because you may not notice something until you fix a different problem. When I took methyl folate and depression went away, anxiety took its place. Now that I can make serotonin, I found out I have trouble getting rid of it due to another snp.
There are so many variables. Oxalates are also something to consider. They can cause troubles too...
I seem to handle those well but I'll keep an eye on it because everything changes now.
There are also herbs that help the body increase production of some things or slow down some things. I studied food science at Rutgers worked in R&D at big food companies. I thought I knew it all. Getting hit with deficiencies when I was eating right was a humbling experience. The learning curve
That's so interesting. I had to stop being vegetarian after covid. Covid is a hell of a curve ball no matter the bat anyone is using. I'll have to look into herbs. I had heard great things about tollovid which I believe is derived from a herb used in TCM.
On this genetics thing is steep but it is where we need to go to get to healthier folks. One mans good is def another mans poison. One size fits all nutrition has had its day. Medications that deplete vitamins need to be seriously looked at too. pmc.ncbi.nlm.nih.gov/articles/PMC...
I meant to say one man's food 🙃
Yes. The test was not covered by insurance but it cost less than $400. The data goes right to your Dr. I pay about 100 per hour to talk to the counselor. That isn't covered by insurance. The cost is in the blood work tests for vitamin deficiency. That is usually covered by insurance.
Also, parents should not know all about children's genomes, except where interventions possible during childhood.
Why live in the dark? The disease PKU is tested for at birth. So treatment can start right away. A gene deletion for making carnitine is even more prevalent than that. So many things we could test for. Why not know?
If you read my original post, yes, find out if you can intervene. If you can't, leave it individuals to decide if they want to know.
However, PKU is tested on everyone right now.
No need to mansplain. My MD does conventional medicine and asks if patients want to do it. Not everyone is ready. It is a big step and more of a journey.
I haven't seen any privacy concerns raised with the level of government surveillance and intervention that would be enabled by population level DNA mapping.
You could take a look at the work around the PALOH study. This involves point of care pharmacogenomic testing of neonates for a variant that predisposes to acquired hearing loss with a commonly used IV antibiotic.
Ongoing 14 site study details: bepartofresearch.nihr.ac.uk/trial-detail...
Scottish Health Technologies Group Assessment shtg.scot/media/2500/2...
The Scottish government decided to fund a phased national implementation: www.thebusinessdesk.com/northwest/ne...
As a pharmacist with acquired hearing loss and a cochlear implant who works in a NICU, I’m obviously biased, but I think this is a good thing and keenly await the outcomes of ongoing studies.
COI declaration- I have no ties to the company, but I do voluntary work with the Rotunda Foundation for the Charlotte Stoker Fund.
Thanks for this. I can see the potential value of this & of expanding the currently small evidence base, but surely a big difference in the pros / cons of this ie point of care testing of infants before giving IV antibiotics (which I see doesn’t cause a delay in treatment), vs universal mapping?
Yes. Universal is on another scale entirely and it opens up significant ethical concerns. It will be interesting to see the consent model & how parents react to this. I remember seeing Dennis Lo present on NIPT back around 2010 and that is pretty mainstream now (not too equitably available though).
It'll take at least 30 years for any sizeable impact to be felt. Add that on to the start of 10 years...
Non-medic here. If AI is used in a well-planned way it might make significant changes in the way we view chronic disease. An example could be look at the causes and incidence of insulin resistance (IR) rather than, say, concentrate on T2D, central obesity and liver disease - which arise from IR.
I found the conjunction of this trailing at same time as passing of assisted dying bill & global warmongering escalation very dispiriting. We know so much about social ways of prevention of suffering, not implemented, yet profiteering leaders turn to technologies, weapons & dehumanisation.
The NHS being a prevention service will only take us so far and will hardly make a dent in the Labour health mission of halving the gap in healthy life expectancy. If we're serious about prevention we need whole of government action on the wider determinants of health. bsky.app/profile/char...
Genomic mapping. Pushed by insurance companies who know the information will eventually make it their way?
We already know that blanket screening leads to high risks of needed over treatment and excess health costs. No reason to believe having your whole genome available won't lead to same
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100% an excuse for eugenics knowing that git
Given the recent article in the Lancet about bespoke cancer treatment I think this is perfectly reasonable
Feels too eugenicky for me, but I'm a Jew with multiple chronic illnesses, so I'm sure I'm overreacting. Narrator: She was not, in fact, overreacting.
A prevention service sounds terrible tbh. The role of the NHS is to do everything humanly possible to fix people once they're sick, no matter what kind of lives they've lived
Hot take: promoting public health is the responsibility of every department of government, from housing to transport, education to environment... except for the department of health, whose job is just to make people better
Really? The NHS has no role in screening? Vaccination? Clearly NHS has important role in prevention as well as other departments. Although mass genomics unlikely to be the answer to the most pressing problems.
Many conditions are much better prevented than cured. The classic is this one, which can be prevented once genetically diagnosed with a supplemented diet: en.m.wikipedia.org/wiki/Phenylk...
Yes, but the UK already has PKU screening, without WGS
They aren't trying to prevent anything. They're just looking for a way to make healthy people pay for drugs they don't need, and should we go the way ReformUK wants to take us, the insurance companies won't have to pay out if you do get ill because it's a pre-existing condition.
England has such an inglorious tradition of Health Secretaries espousing emergent technologies ahead of real evidence or cost-benefit analysis. Attention seeking, image promotion, diversion from real problems and solutions, or facilitating potential donors?
It's also traditional for them to announce or take credit for things the NHS was already doing or planning. How many times are we going to announce more care outside of hospital and more emphasis on prevention?
I see greater benefits in managing chronic conditions through wearable devices combined with fast access when flare ups kick off. Much larger benefits. But I’m sure some lobby organisations would love the genome data. And insurers! The telegraph cannot be trusted. It is a shambles.
This has potential for real risks. Is this to get an anonymised dataset for research, or will it be linked to individuals which would bring huge issues which others have mentioned. Future insurance, disclosure of future health risks, criminal justice implications, paternity….
“health care free at the point of risk, not just need” is a nice sound bite from Wes, but I fear it will be used to justify shovelling money at biotech & private testing companies, for tests of dubious clinical benefit. Would love to know @mgtmccartney.bsky.social’s thoughts.
Also *waves from the corner of the disability world where genetic links are either absent or research into them strongly opposed*. There's no marker for hypermobile hEDS. We actively fight against the search for a marker for autism because of the eugenics possibilities.
I for one do not trust any government with information about my genetic predisposition to various conditions. They're already trying to democide me from multiple angles, now they want to identify what we might have at birth so they can "tailor" our medical care?
McCartney’s too busy writing anti-trans hit pieces
For individuals, there's a lot to be said for blissful ignorance.
am on it!
There's a great article in current Private Eye about misuse of testing companies rather than established NHS laboratories during COVID. Wes seems to have got his timing wrong. What his he going to learn for the mistakes Hancock made?
So-called “personalised healthcare”, at least as used by Streeting, seems to mean an awful lot of well people being tested then treated with costly drugs & surgeries. So it’s a pharma bonanza & an ethical minefield that deserves better analysis than its getting in mainstream politics & media.
That was my first thought too.
An example of "personalised medicine" available but not used is genetic profiling for prior tolerance of anti-depressants. Antidepressants are cheaper than genetic testing so common practice is to try them one by one on the patient until GP finds one which works. This can have dire consequences.
I’ve been asking these questions for years and “personalised medicine” (much like AI) is always either “just round the corner” or “here already, if you squint hard and buy into a massive amount of corporate spin”
Some major causes of ill health such as some cancers and diabetes do have a heritable component, but what exactly would genomic testing add here? Genuine question. Would the advice given to someone not mostly be the same as to anyone, around healthy lifestyles?
Away from the biotech / tech spin, the actual “personalised medicine” that has been shown over & over to reduce sickness & death, is consistent contact with a GP who knows you. Ie, the opposite of the tech-based, mega-surgery, corporate healthcare model Streeting is unveiling next month.
Here’s the Telegraph article that the BBC is citing too (why is it always the Telegraph that gets Streeting’s briefings?)
Because he wants Torygraph readers to already know who he is when he’s leader of the Labour Party
That ain't gonna happen.
"Minority Report" anyone? Just saying...
It is hard to trust Wes Streeting’s ability to accurately weigh the risks & benefits of universal genetic testing of babies when he spouts corporate hype every time he opens his mouth. It’s such a bait & switch. “Save babies, end cancer & diabetes” means “um we might spot a few cases we can treat”
But just think of all the *data* Streeting’s credulous approach to genomic testing is gonna generate…
I see Peter Thiel salivating already. #Palantir
(Not to mention all the data generated by his credulous approach to health apps… “Much of what is done in a hospital today will be done on the High Street, over the phone, or through the app in a decade’s time…”)
I have just had a knee replaced. Can we prioritise phone numbers that connect to humans, physiotherapy where the beds aren't broken & 24/7/365 hotlines for post operative support. Tech has is place in reducing admin but it won't replace systems with sufficiently resourced humans.
Meanwhile if you actually want to measure your propensity to disease and do something about it (or demand politicians do), you’d be better off looking at your microbiome, your metabolites, or - more than anything - your wider environment - rather than your genes. www.sciencedaily.com/releases/201...
Lord knows I'm a solitary, introverted, shy misanthrope but even I know that medical treatment and health management need to be done face to face to establish rapport and ensure clear understanding (and avoid tech difficulties).
I would be interested to know who is going to have access to this data and who will hold the data? What other uses will it be put to that are not just for the individual that it belongs?
Well indeed.
Even if data were ‘knowledge’ (which they aren’t) in a clinically useful sense, I keep thinking of this: “All knowledge attains its ethical value and its human significance only by the human sense in which it is employed. Only a good man can be a great physician.” Hermann Nothnagel (1841 – 1905).
Because the Telegraph cares about big business and not healthcare. They opposed Covid mitigations and consistently platform misinformation spreaders.
Laura D is generally a good health journalist of long standing?
I'm glad they talk about the data aspect 'cos it sounds like everyone's being fingerprinted at birth and anyone not in the database is either an immigrant (born elsewhere) or their family's on a list of those who did not consent? It's a shame to even think that suspiciously but America "leads" here!
Currently barely possible
We already have “an exquisitely personalised medicine at a critical moment” - #breastfeeding! Oh, whoops, that would mean supporting women and children, not VCs and private industry #BreastfeedingMatters #BabiesBeforeProfits
I've had pharmacogenomic testing & it was EXTREMELY useful for me. It showed the PPI I was taking was not the right one for me, we changed my pain med to something that worked, etc. For example, many medications I simply do not metabolise at all. Others I metabolise too fast. Now we know.
I am a complex comorbid chronic illness patient. It was definitely worth it. Can't wait for biologic meds to be included so I don't have be on something for 6 months to find out if it works or not. That is a horrendous experience, by the way.
Genomic mapping at birth however...
Done with care and adequate controls could be very useful. Maybe I and the many, many thousands like me would not be in the situations we are in.
What you had done was brilliant. But not mapping a child's genome at birth.
What is the difference between doing it at birth or say at 10 years old when the child gets sick?
In my case, genetics found vitamin deficiencies caused by errors of metabolism. I still take only one med and the lowest dose, but a few more vitamins that I actually can absorb and use. The wasted money was on one-size-fits-all vitamins. Now I can target ones I really need more of than someone else
Genuinely interested as to what vitamins, effects and what genotype markers those corresponded to differences with metabolism / absorption, if you’re up for sharing. Is there peer reviewed research on this? I do think there’s some interesting potential but there’s a lot of over-commercialised stuff
What worries me most these days are a few MDs doing books and videos and giving bad nutrition advice. For example, pushing nutritional yeast is a very bad idea. These Drs never took nutrition in college, gave bad advice were sick themselves and then discovered collagen or seaweed & are pushing that
To cure everything for everybody. They are doing a lot of damage I think. Nutritional yeast is a processed food that is no better than MSG. Seaweed is also a stand in for MSG. They need to just take a step back and learn a little something but they are too busy pushing books and supplements.
They are becoming an echo chamber for each other. Collagen also can contain lot of free amino acids that are a problem for folks trying to avoid MSG and migraines. They all take a lot and sell a lot of ultra processed things. It's hard to know who to trust.
BCO1 gene for A www.genecards.org/cgi-bin/card... PDXK gene for B6 www.genecards.org/cgi-bin/card... these are just a few examples. It's been a journey. As I clear up each health problem a new one is revealed. It's a complicated journey but I feel better each step of the way.
I agree. What happened was this, my Dr asked me if I'd like to be one of her first patients to try these new tests even though insurance would not cover the test. The results for the 3500 snps are accessible by the Dr. I get my regular blood work based on any symptons I have.
The blood work will show problems like anemia or homocysteine. Then the Dr and counselor discuss the results and the counselor looks for the why. For example. My skin was bleeding I suddenly gained weight and had crushing fatigue. Blood work showed Vit A deficiency even though I was taking Vit A
Genetics found BCO1 mutation. I can't convert beta carotene to Vitamin A. My multi only contained only beta carotene. I also am allergic to eggs so can't get A from there. I had to supplement for a while with a diff vitamin. Now my blood work is good so I can just rely on foods. The deficiency
Had caused my thyroid to slow down this the weight gain and my skin was affected. The symptoms cleared up. I feel a lot better. Also my immune system is back to normal. I am not getting COVID every time it comes around. That was just one example. Also same with B6. I was deficient. I was already
I'm not sure I would want to know that In 40 years I would get huntingdons chorea
Palantir will be rubbing their hands with all this information. #moneymoneymoney
I'm also worried about Palantir getting hold of the data. Theil is a very sinister character.
Comprehensive mapping at birth could benefit those with inborn error of metabolism e.g. for which genetic tests already exist. [More true diagnoses, more effective interventions, started earlier] Mapping to "discover cures" is naïve: genetic correlates of disease are not druggable targets per se
Environmental/social causes of ill health (ranging from pollution to poverty) will remain as entrenched as ever
clearly it's not transforming healthcare but what's worrying me is that it's reinforcing genetic deterministic and essentialist views and that has much wider consequences in the way people think about health and disease. A good example here of education trying to counter it doi.org/10.1126/scie...
Actually had a 3500 snp test done and I have to say, to my surprise, in my case the opposite was true. Genetics is not destiny. It just helps you play the hand you are dealt. I have trouble making some enzymes or absorbing or using some vitamins. I just take or do other things to help them with that
Another way to use genetics is as a suggestion for things to look out for. If I'd been tested young and found to have the genes that can set you up for coeliac disease, then I might have been diagnosed when the first indicators appeared, in my teens & early 20s, rather than at 50yrs old post-damage.
There is a gene for iGA deficiency. That's the one that may give you a false negative on a celiac test. 1 in 800 folks have that. Too many folks go undiagnosed or get a false negative. Also if you don't have the other genes for celiac you might not have to worry about it.
Yes indeed. Gives you suggestions for indicators (or not) later on.
Exactly
My thoughts
Fine, if this mapping is for diseases that can be prevented/treated. I just see much anguish for parents.
And meanwhile, he continues to ignore situations that are staring us in the face and that really aren't going to be helped by high tech.
Like many politicians entering the complex and challenging domain of health, he is attracted to simple and superficially plausible (to those who don’t understand health care) technological or management solutions. They rarely help, always cost more and only benefit their new friends in consultancy
Sounds more like a cover for eugenics and an excuse for tech/data firms to fill their coifers 😒
Nope
Of course not. The reason it can't is illness is also caused by environmental factors and the single biggest one is poverty, so unless you solve those genomic mapping won't change much.
Yes, get upstream of social determinants of disease. Also complete genetic mapping poses ethical issues. Current ethical codes don't test children for adult onset diseases where there are no useful interventions in childhood. Why does a kid or their parents need to know they have Huntingtons?
And unless the DNA is deleted straight after testing it is a privacy nightmare. No doubt the police will want access to the database 'to prevent future crimes'. Expect retrospective class actions from those who were unable to give their consent to this.
In a world where we move towards insurance based healthcare, this will only lead to refusal of care due to pre-existing conditions being the norm for a huge number of people and the devaluing of many lives. It's eugenics-based healthcare, under a veil of 'benefit' marketing.
If he wanted to prevent ill health, Streeting wouldn’t deny vaccines to the majority of the population - least of all to kids. bsky.app/profile/jame...
Exactly this.
As long as they dont actually treat all the known and treatable conditions we have right now it is such bullshit. Plus what do you do with this information, most of the time nothing. Plus people also have the right to not know about their genetic disease burden.
We have a 50% serious genetic deadly disease in my family that starts around 35 and the decision whether to test and to know is something that is absolutely not to be taken lightly
Only useful for rare genetic conditions with impact in childhood, but the worry is how is this data going to be held. Also if it is going to be used for polygenic risk then it should be optional at an older age when the person can discuss the risks vs benefits as no evidence of benefit currently.
I should also add I would almost certainly opt out if it was my child and offered for future rather than current risk.
it'll mean that some people won't be able to get health insurance after Wes does what his paymasters want and privatises it all
More likely a useful tool for the insurance industry which will be given control of the NHS in a few elections time.
Not sure how explained in UK press, but there is a needle-in-haystack phenomenon which if properly done, limits the findings to what is being sought (the 200+ agreed-on conditions). Wariness is warranted re: data storage, private sector involvement, but earlier diagnoses do track with better care.
Wouldn't it make some people uninsurable? Which is fine all the time we have a real NHS, but that isn't a given.
Actually the opposite. A population that is mostly insurable is ripe for politicians to move to insurance. The more uninsurable people there are, the less likely an insurance system will be
I mean, that’s probably true for as along as we have a normal party running the country. But I wouldn’t be too complacent about what happens in 2029.
Let's see what happens with Reform councils and social care, my guess is they'll act like Tory councils with the thinest Faragist tinge. I'm not convinced RUK will get any more seats in 2029. Farage will get bored and go to the US where things will be more "interesting" to him with Vance MAGA
eeesh I wish I shared your optimism, looks to me like Starmer is gonna hand it to them on a plate, the Tories having died c2026
Farage was not going to stand last year. RUK *is* Farage, without him, the party is dead. MAGA is a big lure to him and he may get bored of Westminster. I am more worried that after a RUK collapse there will be a Tory resurgence with a party of younger ex-RUKers
I mean whatever badge ends up on it, seems to me Starmerism is creating the conditions for something pretty unpleasant and extreme post 2029
Agreed. I figure it's not going to matter whether Farage runs or not, as Labour seems intent on courting the people who'd vote for RUK with his policies. I'm not convinced in 2029 that Labour won't be the de facto RUK party.
The only thing that prevents a Labour-Tory-Reform coalition is petty tribalism. They sing from the same hymn sheet and, while there may be some differences on the detail of policy, they are far closer to each other than are many European parties who have successfully held together a coalition.
I so hope you're right (about Farage just going away).
Not at all thought through. For one, think of what the insurance industry is going to do with this. You have gene x and your insurance premiums go up 10 fold.
This is my main (perhaps only) issue with it.
Genetics has already helped me in dramatic ways. The chronic health burden of unknown errors of metabolism was crushing. Medical tests were only clues, a general test for many snps was done, genetics counselor was key to getting an explanation my MD could act on. I feel better than I have in years.
If it involves handing over everyone's genome map to Palantir or some of the 55 Tufton St lot to "process" as I'm sure it would, then I'm sure in the long run this would be catastrophic
It's such a tough call. Tech offers huge huge opportunity for healthcare.
You forgot to add companies or corporations to your comment
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Streeting has been bought by Palantir. Thiel is not satisfied getting all our personal data, he now wants our DNA.
I just think it's a fairly abject failure to understand what AI can and cannot do. If you want to prevent disease build a park and lift people out of poverty. The abolition of NHSE makes him hard to take seriously. The 10-year plan was in progress when he did this - did they have to rip it up?
There's been virtually nothing about social care. Even looking at it through a purely secondary care lens, better social care is crucial to reducing waiting lists. That's before we get on to: I don't think Wes Streeting understands what AI is. Genomics isn't going to make food healthier or
active travel easier. Definitions of AI vary and cover a large number of different types of programming/coding. There are multiple legal definitions. Which one is he talking about? A better bet would be upgrading existing NHS IT. Trying to figure out why it takes so long to log in
to a computer and how to solve that problem is a much clearer goal with much clearer benefits. I suspect AI will be a largely damp squib and indeed genuinely useful AI tools will never see the light of day in the NHS because they won't be viewed as "AI", whatever he thinks AI even is.
