We are in serious trouble over screening

BMJ summer column, here but cut and pasted till the login works below.

We are in serious trouble over screening. For all that medicine has cringed at paternalism and “doctor knows best,” has wrung its collective hands, and promised to do better, screening is still the last great preserve of unethical practice.

If you are about to have a small skin tag removed, a quick procedure with low risk of hazards and complications, you have to give your written consent. The doctor must explain the procedure and potential hazards; the patient must understand and agree before anything is done. You are an adult, properly informed by your personal doctor, and free to choose what to do.

Compare that with screening tests. We are invited for cervical, breast, or bowel screening, with literature that aims to persuade us that the chance of screening saving our lives is high. The implication is that the tests are simple and that it is risky not to have them done. In Scotland, going for cervical screening is a process compared, in official NHS literature, with buying cinema tickets or booking a haircut. The leaflet “NHS breast screening” says that, “Screening can find cancers which are treated but which may not otherwise have been found during your lifetime,” but doesn’t say that this is the case with about one in four breast cancers, which are treated with mastectomy despite the likelihood of the disease behaving as though “benign.”

Patient literature for bowel cancer screening fails to mention the lack of improvement in overall mortality rates in the screened population. Meantime, health charities unhappy with the lack of national screening for prostate specific antigen advertise to men that the test is available and that doctors have no right to refuse it. For these screening tests there is no formal consent process; rather, appointments are prearranged or test kits are sent to people along with promotional literature. There is no cooling off period or a statutory discussion to ensure reasonable understanding of risks and benefits. There is no oversight by a medical practitioner to ensure that the individual person is making a decision in keeping with their desires. This is unethical because persuasion into screening is unethical. We have no right to assume that people wish to take part in a process which causes harm to a substantial proportion. We have no right to insist that because it may be good for some, it is good for all.

What should be done? Firstly, all adult screening programmes should be re-evaluated in the light of the most recent evidence by an independent body such as the National Institute for Health and Clinical Excellence. Secondly, information leaflets about screening should be provided by an independent body that does not care how many people are screened, just how many people are informed. And thirdly, doctors should withdraw support for screening programmes until fair and ethical information and free choices are made available to all.

9 Responses to “We are in serious trouble over screening”

  1. Derek Tunnicliffe July 31, 2011 at 1:12 pm #

    I assume the response to your later post from Jobbing Doctor is in response to this one?

    From my understanding of how the various cabals in the NHS bureaucracy often work against each other (or used to), it probably needed lobbying of parliamentarians and such to get any screening plans discussed.

    But surely not all screening is useless, or of limited value? Thus, Margaret’s proposals – independent evaluation and information provision – are worth promoting. I am not sure that all GPs are well enough informed to be able to support your third proposal, though. (Based on reports I get of GP meetings concerning the NHS reorganisation as it affects Public Health).

  2. Elizabeth (Aust) August 6, 2011 at 10:42 am #

    I think screening, especially for women, has become very frightening. On Govt health sites if you post anything factual and informative, backed by medical journal references, it’s deleted or edited or the pro-screening people will print a misleading piece dismissing your post and then immediately close the thread, so they have the last word – yet inaccurate posts that serve to scare and misled are left in place. Now that’s censorship…and it’s the reason most women are still uninformed of the risks and actual benefits of screening after decades of testing – many don’t even realize it’s elective.
    The Cancer Council still use the old chestnut – we have less cervical cancer than African countries “because” we screen – rubbish – if that were the case our rates pre-screening would have matched African rates. Not true…
    African women also have unique risk factors – you can’t compare the two – I don’t think Papscreen or the Cancer Council even bother to think up new misleading angles. I notice this same argument was shot to pieces by Angela Raffle many years ago – when this comment was made in the BMJ. Sadly, we don’t have Angela Raffle or anyone else fighting for women’s rights and so these statements go unchallenged and are accepted by many women.
    These comments are an insult to our intelligence. It’s a conspiracy of silence AND the insulting “stories” they publish as well – women “shocked” that others don’t have screening when asked to do so (like we’re sheep) or someone praising the test because it “saved” them – their age is always a dead give-away – false positive!
    It really is insidious and the tragic thing: so many women now consider themselves “cancer survivors” or think they had a “cancer scare”…they’ll never know they were victims of a bad screening program.
    I’m pleased to see there is some progress in the UK – that some doctors are fighting for our rights and the ethical practice of medicine.
    If it reaches our shores, I’m sure they’ll go into damage control to protect the precious programs and their vested interests.

    • kirsty January 1, 2017 at 8:53 pm #

      You’ve got it in one!!!
      If the biggest majority of the population knew this, the current ” attendance” figures would decline even more!!.
      By the way, to “opt out” (of a screening programme that you didn’t even to sign up for personally in the first place) ask for a disclaimer form.

  3. Elizabeth (Aust) December 27, 2011 at 12:32 am #

    Dr McCartney,
    I think it’s this sort of article that needs to be challenged – it is not only inaccurate, it’s disrespectful. “Women making “excuses” to avoid cervical smear test” – why is women’s cancer screening always presented in this way and it seems perfectly acceptable to most. We don’t need an “excuse” to decline an elective cancer screening test and you can’t “avoid” something elective – you choose to have it or not. It is my decision – yet it’s presented as something mandatory and women who decline are expected to provide an “excuse” for others to judge and dismiss.
    To suggest we have pap tests because Jade Goody died from cervical cancer is absurd. We are all individuals with different risk profiles and Jade’s cancer was an adenocarcinoma, usually missed by pap tests. Better advice would be to watch for persistent and unusual symptoms and see a doctor, not for a pap test, but for a proper investigation of the symptoms. This sort of “advice” risks our health.
    The cancer charities treat women with near contempt – like ignorant sheep that should do as they’re directed. I’m so sick of health journalists producing this sort of propaganda – if they want to write about pap testing, open a book, do some research and produce something accurate and appropriate. The starting point: cervical screening is an option and it requires our informed consent and some women will decline testing, their absolute right. It is not unreasonable, shocking or anything else when a % of women decline to screen. These articles are an insult to our intelligence.

  4. Alexandra March 22, 2015 at 12:30 pm #

    “We’re in serious trouble over screening.” I hope that your words become a reality. The NHS should be in serious trouble over this… two decades overdue.

  5. Helen C December 6, 2015 at 1:34 am #

    It is very, very sad that Jade Goody died so young. Meanwhile, I have had cervical smears for years (I am 61 now), have often had to repeat them, because the “sample was unclear”, but have never had a worrying result. I have had mammograms since my forties, because I have a family history of breast cancer. No bad results here either, although, again, I have had to have the procedure repeated once or twice because of unclear samples. All very stressful, and probably not worth the bother. I am not sure I want to go through it any more—it hurts, for a start, and I am frightened of having a false positive result. AND, no way do I ever want to have to go through chemotherapy.

    Bowel screening? No way! I dread the thought of a colonoscopy—–the “prep” rather than the procedure, but I know the procedure can be risky too. And, dont want to have to mess around with my poo on bits of card—it is bad enough picking up after the dog!! If I had a change in bowel habit, or bleeding, I would think differently, but I dont. I feel perfectly well.

    I thought retirement was going to be fun—at least for 10-15 years or so. Instead, I am being bombarded with medical appointments of one sort or another: screening tests, that ghastly alendronic acid for osteoporosis (and I’m only just over the “threshold score”), and there is always the chance that I’ll have statins pushed on me just because I am already on blood pressure drugs. Even a visit to the dentist isnt straightforward these days: I know exactly why he wants to “examine my soft tissues”——–dentists used to be there to examine one’s teeth!

    My husband willingly has all the tests. I worried when he had his prostate test (negative), and now, we are waiting for the results of his bowel screening. I am sure he hasnt even thought about it since he sent off his samples, but I have. I am sick of the whole thing, to be honest. I want to enjoy the rest of my life, and I am not at all bothered about living beyond 80.

    I wish Margaret McCartney was my GP !!!

    • Janet April 15, 2016 at 12:39 pm #

      I cannot agree more with this lady. I retired 4 years ago before 60 but you are right, listening to all the screening propaganda makes you ill. I was a teacher for over 33 years and just want to enjoy myself with my husband travelling, sporting activities etc. I received the bowel screening kit 2 days after my 60th birthday! No thought about the fact that getting to 60 is a celebratory time! I have ready Dr McCartney’s book and she is a breath of fresh air with a common sense approach which guides us all to be aware of our own health – but the powers to be seem to think they have to do it for us.