Perhaps I'm becoming too cynical in my old age, but now that the NHS is looking after us 'from the womb (last abortion Bill) to the tomb (suicide Bill), this shiny new bauble, of genomics 'preventing illness' I get the impression that, for the sake of the Nation's Health, genomics could be used to justify enforced abortion and enforced 'suicide' ... There's a warning from history about where that sort of thinking leads.
An excellent book on history of scam of "personalized medicine" and "pharmogenomics is "Tyranny of the Gene: Personalized Medicine and Its Threat to Public Health" by James Tabery
It starts with 2003 Collaboration between NIH Francis Collins and Pfizer "SNP Consortium" Collins is architect of scam. He Should be in federal prison. In 2003, Collins initiated based on "mapping of human genome" They can now located since "gene" for every childhood disease: one-gene = one disease. total bullshit, since many genes involved. These people are ripping us off!
The United States is embarking on a medical revolution. Supporters of personalized, or precision, medicine—the tailoring of health care to our genomes—have promised to usher in a new era of miracle cures. Advocates of this gene-guided health-care practice foresee a future where skyrocketing costs can be curbed by customization and unjust disparities are vanquished by biomedical breakthroughs. Progress, however, has come slowly, and with a price too high for the average citizen.
In Tyranny of the Gene, James Tabery exposes the origin story of personalized medicine—essentially a marketing idea dreamed up by pharmaceutical executives—and traces its path from the Human Genome Project to the present, revealing how politicians, influential federal scientists, biotech companies, and drug giants all rallied behind the genetic hype. The result is a medical revolution that privileges the few at the expense of health care that benefits us all.
Now American health care, driven by the commercialization of biomedical research, is shifting focus away from the study of the social and environmental determinants of health, such as access to fresh and nutritious food, exposure to toxic chemicals, and stress caused by financial insecurity. Instead, it is increasingly investing in “miracle pills” for leukemia that would bankrupt most users, genetic studies of minoritized populations that ignore structural racism and walk dangerously close to eugenic conclusions, and oncology centers that advertise the perfect gene-drug match, igniting a patient’s hope, and often dashing it later.Tyranny of the Gene sounds a warning cry about the current trajectory of health care and charts a path to a more equitable alternative.
I don’t know if anyone else feels the same as I do but the idea of every newborn baby having their complete genome recorded at birth fills me with absolute horror. Will it be mandatory or will there be an option to opt out? What a wonderful amount of data to sell on or use in any way possible. No need to bother with ‘papers please.’ Sorry to sound cynical but I doubt it will be for the benefit of the newborn…. Totally useless - in our brave new world being recorded and used for other purposes imho.
Here's another example of NHS madness,reaching for the stars while ignoring the lawn.
I want to get back to cataract surgery. For safety I need some supervision like a trainee. However, there is no system in place for surgeons returning to the NHS to brush up their skills.
In the end I took a 6 month job 150 miles from home as a resident covering A and E in a very short staffed department doing 1 in 2 on call aged 60. I was allowed a little time in theatre and it helped.
I had taken a big pay cut and had to rent a flat in a pretty ropey area next door to burned out shops and hotels for the homeless.
I have tried contacting the College and they just throw up their hands,saying they are short of training posts anyway.
The result is we import doctors from Egypt, Pakistan,India and even Afghanistan on 3-4 y visas for private companies. They cost nothing to train,and can be got rid of without worrying about fussy things like employment law if they don't measure up. Alternatively patients are being sent abroad for cataract surgery to Baltic stated or Poland for example.
I may have to go to India if I really want some practice,all of which will be done at my own expense.
Quite apart from the hubris of thinking they can use these technologies to predict and prevent disease, to me one important issue is the vast transfer of taxpayers' money to the Govt's mates in lifesciences and other fashionable (an extremely expensive) industries. An illustration of this was in the late 1990s when Tony Blair and his friends created the psychiatric "diagnosis" of DSPD (Dangerous and Severe Personality Disorder). A paedophile was due to be released from prison without supervision (never mind that the judge should have given him sentence which required the Parole Board's scrutiny rather than a fixed term) - so the media was conveniently on hand to report this - and other similar cases - all over the front pages of the newspapers (to whip up a panic and prepare the public for the costly solution.) So said prisoner(s) were transferred under s47 MHA to secure hospitals with this new diagnosis. And guess who came to the resuce by providing all these new hospital beds? A private company opened up several secure units, headed by a close friend of TB, to take in all these dangerous people. Even a whole new building was constructed at Broadmoor called the DPSD Unit. Problem, reaction, solution. And 36% of the money health commissioning groups were paying to hospitalise these people was going straight to the share holders' pockets. It didn't matter that later on, the Competition Commission investigated and ordered the break of up this particular monopoly, nor that health authorities decided, later on, to start providing their own secure psychiatric care again - those individuals could reap the rewards and move on to something else. And the DSPD unit was repurposed. And not surprisingly, the Government-initiated new "diagnosis" never really caught on. (Should have known better than to instruct a group of forensic psychiatrists how to diagnose their patients.)
Just an example of how Government's friends' snouts can be directed to the NHS-funded trough!
The problem as always is that the NHS wants to play with the shiny new toys, when what is needed is to just do the day job.
We will be told that we are leading the field - just like we lead the field in vertical take-off and landing aircraft - yet we are now buying them from US.
I am sure the issue is Govt Advisors - those with fingers in academia and are also pharma advisors, offering gold tomorrow, always tomorrow. Using genetics will make us all patients ie you have a x % risk of y - there is no certainty that it will happen; and if the current threshold risk levels for treatment with statins are used you have a 3% risk of CVD ie 97% of not having a CVD - which horse would you put your money on ?
"Using genetics will make us all patients ie you have a x % risk of y - there is no certainty that it will happen; and if the current threshold risk levels for treatment with statins are used you have a 3% risk of CVD ie 97% of not having a CVD - which horse would you put your money on ?"
You are so right. I had to give Iain Hacking's "The Emergence of Probability" back to the library. Perhaps I should buy it.
Because I never finished reading it; and apart from the fascinating analysis of precisely what the title promises (in the 17-18thC), he talks about the lexical shift of "probability" from the sense of "this author is PROBable - i.e. authoritative/reliable" to the modern sense in terms of the science of probability. I think the book has classic status in history of science, and from my half-reading, it deserves it.
But this distinction of sense seems to now have been erased, so that any - however quantified - probability (in the modern sense) now equates to the old sense of reliability/certainty.
There is something deeply screwed about the scientific attitude to time and prediction implicit in this. It's everywhere. "Science" now seems to be about "stopping the (inevitable) bad thing from happening". Which leads me well outside science to Thomas Pynchon's Ship of Fools in "Gravity's Rainbow" - the never-ending party down the Oder in which Rule 1 is "Nothing shall happen".
Oh dear oh dear. Is it me or is it them? I do wonder.
Do we have a medical system that can diagnose illnesses & treat them by seeing the live human being in the here & now or is that too much to ask? Bit like having a shop which works perfectly if only it wasn’t for the customers……..
There is an obsession with illness instead of an obsession with health beyond the quick fix. We evolve to be healthy - what are the factors that work against that? Let's go for what was seen as good food before the chemical industry took over, let's go for good, clean, safe housing with properly dealt with sanitation and clean water. Let's go for being outside enjoying the natural environment we evolved in with sun and unpolluted air and greenery, enjoyed with physical movement. Both the Iliad (~7 BC) and Mahabharata (~3000 BC) that I have read are about war. The most touching part of the Mahabharata is the last canto where women are reviewing the death and destruction and wondering what it was all for. The biggest change we need is investment in diplomacy instead of machines of war. [Thoughts of an old geezer on the last lap]
Just been doing a bit of research on the AI bullshit, and here is yet another alkahest* which will never get beyond the _nigredo_**.
The only results I can foresee from this genomics-bullshit are:
1. Some snake-oil salesmen will make a lot of money;
2. There'll be less money for actually seeing patients and treating them;
3. A lot of patients (or parents of newborn babies) will be unnecessarily worried, thanks to GenomicsMagic(TM) with added ModelMagic(TM).
"You are at high risk of X, Y, Z, alpha, beth, zeta and tzaddi. But don't worry, we can't treat them anyway as we've spent all our money on AI, GenomicsMagic and ModelMagic".
* my new favourite word. The alchemists' posited "Universal Solvent", which would dissolve any matter and make it amenable to manipulation.
** the stage of alchemical transformation in which everything turns to... well... since this is a "family Substack, let's say "dark, worthless substance". Supposed to be just a _stage_ in the process, but with some processes - like this one - you know from the start it's not worth getting the alembics and pelicans out of the cupboard.
According to David Rasnick, who has done a lot of work on cancer,
"... the big name people in cancer research, they all know, and they've said it in print, And I've got the quotes of them, that they know that the gene mutations do not cause cancer. They know that gene mutation theory does not work. And they can get away with it like that because they don't go public on television or anything. And they got these big names and they still get the grant money. They still write grants for these things and work on it. But they admit it, and they admit it in big, huge books like you're talking about that you held up on cancer, and in the papers and their talks, they know it doesn't work. ... So my guess is that science in general is probably corrupt to its core, especially if it's big buck science."
auto-Transcript of an interview with JJ Couey 28 June 2024
"The revolution in medical science means that we can transform the NHS over the coming decade, from a service which diagnoses and treats ill-health to one that predicts and prevents it," added Streeting.
As we say in the good 'ol USA- that boy ain't right in the head.....
the endless prattling about genomics and genes; "plenty good money to be made, supplying the army with tools of the trade; don't get worried about dropping napalm ......"
"The complete lack of evidence in any of these policies is stunning."
we seem in some sort of crazed downhill spiral; Kevin talked today of Ireland's GDP increasing by 10% in the last quarter; as they made so-called weight loss drugs; and fly them across the Atlantic to Indiana; to Eli Lilly; https://www.youtube.com/watch?v=EpMa0DryDIs
they sell these drugs in the US, as they are sold for up to ten times the unit they can charge in Europe (and that little island off the continent, called the UK)
Perhaps I'm becoming too cynical in my old age, but now that the NHS is looking after us 'from the womb (last abortion Bill) to the tomb (suicide Bill), this shiny new bauble, of genomics 'preventing illness' I get the impression that, for the sake of the Nation's Health, genomics could be used to justify enforced abortion and enforced 'suicide' ... There's a warning from history about where that sort of thinking leads.
I am cynical to Vivian. I think it’s our experience.
Must try harder with my grammar….’too’ Vivian…..
No worries - i got it first time round!
An excellent book on history of scam of "personalized medicine" and "pharmogenomics is "Tyranny of the Gene: Personalized Medicine and Its Threat to Public Health" by James Tabery
It starts with 2003 Collaboration between NIH Francis Collins and Pfizer "SNP Consortium" Collins is architect of scam. He Should be in federal prison. In 2003, Collins initiated based on "mapping of human genome" They can now located since "gene" for every childhood disease: one-gene = one disease. total bullshit, since many genes involved. These people are ripping us off!
The United States is embarking on a medical revolution. Supporters of personalized, or precision, medicine—the tailoring of health care to our genomes—have promised to usher in a new era of miracle cures. Advocates of this gene-guided health-care practice foresee a future where skyrocketing costs can be curbed by customization and unjust disparities are vanquished by biomedical breakthroughs. Progress, however, has come slowly, and with a price too high for the average citizen.
In Tyranny of the Gene, James Tabery exposes the origin story of personalized medicine—essentially a marketing idea dreamed up by pharmaceutical executives—and traces its path from the Human Genome Project to the present, revealing how politicians, influential federal scientists, biotech companies, and drug giants all rallied behind the genetic hype. The result is a medical revolution that privileges the few at the expense of health care that benefits us all.
Now American health care, driven by the commercialization of biomedical research, is shifting focus away from the study of the social and environmental determinants of health, such as access to fresh and nutritious food, exposure to toxic chemicals, and stress caused by financial insecurity. Instead, it is increasingly investing in “miracle pills” for leukemia that would bankrupt most users, genetic studies of minoritized populations that ignore structural racism and walk dangerously close to eugenic conclusions, and oncology centers that advertise the perfect gene-drug match, igniting a patient’s hope, and often dashing it later.Tyranny of the Gene sounds a warning cry about the current trajectory of health care and charts a path to a more equitable alternative.
many thanks
I don’t know if anyone else feels the same as I do but the idea of every newborn baby having their complete genome recorded at birth fills me with absolute horror. Will it be mandatory or will there be an option to opt out? What a wonderful amount of data to sell on or use in any way possible. No need to bother with ‘papers please.’ Sorry to sound cynical but I doubt it will be for the benefit of the newborn…. Totally useless - in our brave new world being recorded and used for other purposes imho.
Informed consent will be needed before anyone takes anything. - in theory.
Parents need to be educated and proactive IE decline in writing before the birth
Don't worry! [Enter, stage left, _deus ex machina_: AI].
AI will ensure that all this data will _only_ be used to benefit the baby, and only _ethically_.
(</s>)
Here's another example of NHS madness,reaching for the stars while ignoring the lawn.
I want to get back to cataract surgery. For safety I need some supervision like a trainee. However, there is no system in place for surgeons returning to the NHS to brush up their skills.
In the end I took a 6 month job 150 miles from home as a resident covering A and E in a very short staffed department doing 1 in 2 on call aged 60. I was allowed a little time in theatre and it helped.
I had taken a big pay cut and had to rent a flat in a pretty ropey area next door to burned out shops and hotels for the homeless.
I have tried contacting the College and they just throw up their hands,saying they are short of training posts anyway.
The result is we import doctors from Egypt, Pakistan,India and even Afghanistan on 3-4 y visas for private companies. They cost nothing to train,and can be got rid of without worrying about fussy things like employment law if they don't measure up. Alternatively patients are being sent abroad for cataract surgery to Baltic stated or Poland for example.
I may have to go to India if I really want some practice,all of which will be done at my own expense.
What a crazy healthcare system!
help
Quite apart from the hubris of thinking they can use these technologies to predict and prevent disease, to me one important issue is the vast transfer of taxpayers' money to the Govt's mates in lifesciences and other fashionable (an extremely expensive) industries. An illustration of this was in the late 1990s when Tony Blair and his friends created the psychiatric "diagnosis" of DSPD (Dangerous and Severe Personality Disorder). A paedophile was due to be released from prison without supervision (never mind that the judge should have given him sentence which required the Parole Board's scrutiny rather than a fixed term) - so the media was conveniently on hand to report this - and other similar cases - all over the front pages of the newspapers (to whip up a panic and prepare the public for the costly solution.) So said prisoner(s) were transferred under s47 MHA to secure hospitals with this new diagnosis. And guess who came to the resuce by providing all these new hospital beds? A private company opened up several secure units, headed by a close friend of TB, to take in all these dangerous people. Even a whole new building was constructed at Broadmoor called the DPSD Unit. Problem, reaction, solution. And 36% of the money health commissioning groups were paying to hospitalise these people was going straight to the share holders' pockets. It didn't matter that later on, the Competition Commission investigated and ordered the break of up this particular monopoly, nor that health authorities decided, later on, to start providing their own secure psychiatric care again - those individuals could reap the rewards and move on to something else. And the DSPD unit was repurposed. And not surprisingly, the Government-initiated new "diagnosis" never really caught on. (Should have known better than to instruct a group of forensic psychiatrists how to diagnose their patients.)
Just an example of how Government's friends' snouts can be directed to the NHS-funded trough!
gosh
The problem as always is that the NHS wants to play with the shiny new toys, when what is needed is to just do the day job.
We will be told that we are leading the field - just like we lead the field in vertical take-off and landing aircraft - yet we are now buying them from US.
I am sure the issue is Govt Advisors - those with fingers in academia and are also pharma advisors, offering gold tomorrow, always tomorrow. Using genetics will make us all patients ie you have a x % risk of y - there is no certainty that it will happen; and if the current threshold risk levels for treatment with statins are used you have a 3% risk of CVD ie 97% of not having a CVD - which horse would you put your money on ?
I think its time for DOGE UK.
"Using genetics will make us all patients ie you have a x % risk of y - there is no certainty that it will happen; and if the current threshold risk levels for treatment with statins are used you have a 3% risk of CVD ie 97% of not having a CVD - which horse would you put your money on ?"
You are so right. I had to give Iain Hacking's "The Emergence of Probability" back to the library. Perhaps I should buy it.
Because I never finished reading it; and apart from the fascinating analysis of precisely what the title promises (in the 17-18thC), he talks about the lexical shift of "probability" from the sense of "this author is PROBable - i.e. authoritative/reliable" to the modern sense in terms of the science of probability. I think the book has classic status in history of science, and from my half-reading, it deserves it.
But this distinction of sense seems to now have been erased, so that any - however quantified - probability (in the modern sense) now equates to the old sense of reliability/certainty.
There is something deeply screwed about the scientific attitude to time and prediction implicit in this. It's everywhere. "Science" now seems to be about "stopping the (inevitable) bad thing from happening". Which leads me well outside science to Thomas Pynchon's Ship of Fools in "Gravity's Rainbow" - the never-ending party down the Oder in which Rule 1 is "Nothing shall happen".
Oh dear oh dear. Is it me or is it them? I do wonder.
Do we have a medical system that can diagnose illnesses & treat them by seeing the live human being in the here & now or is that too much to ask? Bit like having a shop which works perfectly if only it wasn’t for the customers……..
I fully agree. The protocolised practice of medicine would add another string to its bow, genetics…
As if only genetics are the key to good health.
There is an obsession with illness instead of an obsession with health beyond the quick fix. We evolve to be healthy - what are the factors that work against that? Let's go for what was seen as good food before the chemical industry took over, let's go for good, clean, safe housing with properly dealt with sanitation and clean water. Let's go for being outside enjoying the natural environment we evolved in with sun and unpolluted air and greenery, enjoyed with physical movement. Both the Iliad (~7 BC) and Mahabharata (~3000 BC) that I have read are about war. The most touching part of the Mahabharata is the last canto where women are reviewing the death and destruction and wondering what it was all for. The biggest change we need is investment in diplomacy instead of machines of war. [Thoughts of an old geezer on the last lap]
There is no profit in health, you need fear and snake oil to make profit.
Bang on. War is also the perfect profit machine. There is the duo destroying health and life.
facepalm time!
Just been doing a bit of research on the AI bullshit, and here is yet another alkahest* which will never get beyond the _nigredo_**.
The only results I can foresee from this genomics-bullshit are:
1. Some snake-oil salesmen will make a lot of money;
2. There'll be less money for actually seeing patients and treating them;
3. A lot of patients (or parents of newborn babies) will be unnecessarily worried, thanks to GenomicsMagic(TM) with added ModelMagic(TM).
"You are at high risk of X, Y, Z, alpha, beth, zeta and tzaddi. But don't worry, we can't treat them anyway as we've spent all our money on AI, GenomicsMagic and ModelMagic".
* my new favourite word. The alchemists' posited "Universal Solvent", which would dissolve any matter and make it amenable to manipulation.
** the stage of alchemical transformation in which everything turns to... well... since this is a "family Substack, let's say "dark, worthless substance". Supposed to be just a _stage_ in the process, but with some processes - like this one - you know from the start it's not worth getting the alembics and pelicans out of the cupboard.
According to David Rasnick, who has done a lot of work on cancer,
"... the big name people in cancer research, they all know, and they've said it in print, And I've got the quotes of them, that they know that the gene mutations do not cause cancer. They know that gene mutation theory does not work. And they can get away with it like that because they don't go public on television or anything. And they got these big names and they still get the grant money. They still write grants for these things and work on it. But they admit it, and they admit it in big, huge books like you're talking about that you held up on cancer, and in the papers and their talks, they know it doesn't work. ... So my guess is that science in general is probably corrupt to its core, especially if it's big buck science."
auto-Transcript of an interview with JJ Couey 28 June 2024
"The revolution in medical science means that we can transform the NHS over the coming decade, from a service which diagnoses and treats ill-health to one that predicts and prevents it," added Streeting.
As we say in the good 'ol USA- that boy ain't right in the head.....
the endless prattling about genomics and genes; "plenty good money to be made, supplying the army with tools of the trade; don't get worried about dropping napalm ......"
"The complete lack of evidence in any of these policies is stunning."
indeed; empty bluster
____________________________________________________
we seem in some sort of crazed downhill spiral; Kevin talked today of Ireland's GDP increasing by 10% in the last quarter; as they made so-called weight loss drugs; and fly them across the Atlantic to Indiana; to Eli Lilly; https://www.youtube.com/watch?v=EpMa0DryDIs
they sell these drugs in the US, as they are sold for up to ten times the unit they can charge in Europe (and that little island off the continent, called the UK)
I think that Kool Keith/Dr Octagon/[whatever name he likes today] would make a much better Health Secretary.
https://www.youtube.com/watch?v=EJt6C97kAjk
Has a stronger grasp of the problems of modern medicine. "Your insurance is high, but my price is cheap". And makes _much_ more sense.