Posted this on the other thread on a similar subject:
For the benefit of this thread and a more balanced discussion Im reposting here:
Dr Margaret McCartney who wrote the patient paradox, won't take part in cervical screening herself for various reasons. She makes the point of you have symptoms you absolutely should get checked though. If you know who she is, this isn't an insignificant comment.
Given her analysis of the harms / considerations about informed consent / analysis of risk profiles / how data is presented in a biased way and how she breaks all this down in various ways, she's a pretty heavy weight voice to say that.
In her book, the Patient Paradox, she doesn't go that far on a personal level but she later wrote a newspaper explicitly on cervical screening.
https://www.independent.co.uk/life-style/health-and-families/features/why-i-m-saying-no-to-a-smear-7577967.html
In her book she talks more widely about bowel cancer screening commenting that during trials they realised that there was a point where there was almost a point where patients were 'too informed' and didn't comply with the 'desired behaviour' of providers instead opting not to take up the offer.
She also talks about the adverse effects of pressuring patients into cervical screening / advising about weight etc in a tick box way because it can reduce healthcare engagement as a side effect. Thus if they have symptoms about something completely unrelated, patients will leave it longer before seeking treatment because they are worried that they will be scolded about non compliant behaviour for the box tick. This could put their health at risk - and they were never at risk for the issue relating to the box tick.
And this interview is interesting:
https://www.sefap.org/2014/09/24/interview-with-margaret-mccartney-the-waste-and-harm-of-overdiagnosis/
-M.M.: This is the “popularity paradox”. The worse a screening test is, the more false positives there are; the more false positives there are, the more people are led to believe that a screening test saved their life. So the paradox is that the poor screening test becomes more popular, as people are led to believe that they have been saved, not harmed, by it.
She's saying that screening is driven a lot by peer pressure and people coming along saying 'you should have your test, my test saved my life'.
Except the paradox is that lots of these people, didn't have their life saved. They had unnecessary treatment. But they will never know their treatment was unnecessary because of how this works. They just believe their life was saved rather than understanding they might have been one of those who had actually been harmed by screening.
It's a difficult thing to get your head around. Its's an uncomfortable thought that many of those who are 'walking adverts for the success of screening' are actually the unwitting unaware victims of harms done by screening. Certainly no one who may have gone through that will want to consider they've potentially been harmed rather saved. Psychologically it doesn't compute.
Her point is that some of these numbers when assessing risk are massively off.
If the risk across the population as a whole is 1 in 2000, this isn't an evenly spread thing. Certain conditions are very much part of a pattern of family history. So if you have a family history of a certain cancer your risk is actually much higher than that 2000, but the reverse is also true if there isn't that pattern. And this massively distorts 'the risk' you are presented with.
The Jade Goody case above is a good example of a poor example. She had symptoms and was known to be high risk - this means she's not a good example for advocates of routine screening. She was the victim of poor care.
Thus if you are armed with this knowledge about risk not being evenly spread, you might make different decisions. People with a family history might take it much more seriously whereas other might go, actually that risk is really really small, is it worth taking the risk of harm because that's actually a lot higher for me all things considered and I also might wish to consider the impact of the actual procedure itself to my mental health.
Thus being MORE informed can lead to patients deciding they don't want to consent in certain situations.
The whole discussion around presentation of risk is a fascinating one. I do recommend reading up CAREFULLY about what she says in full. Everyone should read the Patient Paradox even though it's now quite an old book now - it's still hugely relevant today. It's one of those books which is hugely important (Ben Goldacre's books are better known about big pharma and bad science more generally, but it's the same principle).
McCartney also talks a lot about the misogynistic nature of the promotion of screening programmes to women too and how they are potentially very unethical and rely on coercive techniques and the infantilisation and patronising of women which doesn't happen in the same way to men. (There are examples of this on this thread).
The point here is that 'risk' is a lot more nuanced and complex than we are often led to believe. When you break it down and assess it, it's not necessarily what we are presented with by the NHS when it tries to promote screening.
There's not necessarily a 'right answer' and one size fits all approach here because there are many variables and different women have different priorities, concerns and risk factors (and this differs a lot from vaccinations which require hire immunity too). It HAS to be a personal decision rather than trying to treat this as something that every woman 'should' or worse 'must' do.
It's a fascinating subject, and I really can't help feel we haven't moved on at all since she wrote it. It's so wrong.