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.
My experience as a cardiac patient has been that admin can be improved, the technology is actually pretty wonderful, and what’s lacking are people. My cardiac ward was never fully staffed and there was little continuity of care. I really wanted to see the same face for more than one day.
Absolutely. Same here.
Reducing staff is absolutely a top priority of this government. Their ideal model for healthcare for us peasants is an algorithm that despenser tablets.
Given the retention, training & immigration numbers. Can understand why Labour is concerned about NHS staff numbers however, medicine is not about medication its about healing. Sometimes that means care from humans with the ability to be motivate & encourage. The elderly? Those that live alone? MH?
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...
Had a visit to genetics because of weird inexplicable health issues and all that did was find out that I have the genetic markers for Beals syndrome. I do not have any of the symptoms of Beals. I still don't know why I am experiencing the issues I went to genetics for in the first place.
I had my gut microbiome analysed and learned an awful lot from it (without any medics), which I have already put into practice. In my case necessary, as medics still tell me (after 5 years) that they have no idea what #LongCovid is, let alone how to help/support me.
Can’t help wondering if the real draw of personalised medicine is not so much “you are predestined to get sick but we can help” as “you are in the market segment that can better tolerate this troublingly toxic pharmaceutical we’d like to sell”
More likely "you're going to cost us a lot of money in the future, so best we head that off by reducing our investment in you now, since we know you're going to be a burden". Like the DNR orders we got slapped with during early COVID without our consent.
Also means we deflect from the pressure to solve more expensive problems like poor housing.
Genomic testing might not change prevention advice, but it does change risk factors. Very useful for calculating insurance premiums.
Ho, hum 🙄
How handy for the pro-insurance crypto-fascist this government appears to be warming the bed for.
bsky.app/profile/davi...
I agree with you up to this point. It has been massively overhyped and helps ppl ignore other factors and public health measures. But there are *some* use cases where it means we can predict (to an extent) when someone either won't respond or will get toxicity so give them something else.
Someone sent me an interesting paper about IV gentamicin and possible genetic disposition to ototocity in newborns - but that was a highly targetted test being done at point of care (without delaying treatment) which is a v different scenario from blanket genomics. Interested in other example papers
Yes def targetted tests (not whole genome) can be useful for drug metabolising enzymes and transporters because these influence the plasma concentration of drug which in turn determines whether the effect is beneficial or toxic (or non-existent). eg bpspubs.onlinelibrary.wiley.com/doi/10.1111/...
Thank you, very informative. There is little benefit in knowing genetic propensity. Targeted medicine OTOH saves lives. Streeting won't put more resource into that. His backers don't make money that way. One sleazy neoliberal Govt after another all putting Corporate interests above the public. 🤕
Or first in line for assisted dying as we don't want you to suffer..
I suppose he could have asked National Screening Committee first. All screening is harmful some has benefits some benefits can outweigh harms and if you’re lucky it could be a good use of scarce NHS resources.
Or, if they introduce health insurance model to UK: "sorry that condition is excluded from your insurance" ( because the data WILL get into the wrong hands.
Precisely
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?
At birth, we would be handing over every baby's genetic information to the government in some form, and there would be no way of knowing how it might be used in the future. If a child has health issues that require genetic testing in order to give them the best treatment, that's quite different.
We're now seeing Musk et al collecting vast quantities of personal information about ordinary Americans, which until recently was confidential, to be held by authorised institutions and not shared. Adding everybody's genome would be another huge step away from any possibility of privacy.
He's a criminal and should be locked up. He's part of the human dysfunction.
Well, when basically decent people go into politics and fail to live up to their principles, you have to start wondering about the nature of our political system. I don't have high expectations but there have to be better ways of doing things. Glad we've got Albo not Dutton.
It will become standard in the future, the testing before treatment aspect. I don't think at birth will ever be used or scientifically justified in practice, simply because the results would be outdated too fast with new meds being developed all the time.
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
Taking it. I have another error of metabolism where I can't phosphorylate B6. I have to take P5P version. Same with MTHFR. Blood work shows high homocysteine. Mutation there. Have to take a methyl version. I could go on. I felt ill. Blood work found out why, I took a better vitamin. I feel better
It also found out other things. But the cool thing is, I can act on them. Avoid some foods or add others to my diet. While some things in the results are scary I have found, genetics is far from destiny. Your environment and actions and diet can all help you deal with fate and hand you are dealt.