[Ben Goldacre schrijft de Bad Science column in The Guardian en ook dit boek wil laten zien dat we via de media de hele tijd gebombardeerd worden met slechte wetenschap en een verkeerd gebruik ervan: "... aim of this book is that you should be future-proofed against new variants of bullshit" zegt hij op p.87. De pagina-aanduidingen zijn weer van een slechte digitale epub-editie, dus bij benadering.]
Wat wil Goldacre met dit boek?
"But this book is not a collection of trivial absurdities. It follows a natural crescendo, from the foolishness of quacks, via the credence they are given in the mainstream media, through the tricks of the 30 billion food supplements industry, the evils of the 300 billion pharmaceuticals industry, the tragedy of science reporting, and on to cases where people have wound up in prison, derided, or dead, simply through the poor understanding of statistics and evidence that pervades our society."(3)
Onderwerpen als bewijsvoering, homeopatie en voedingsadviezen komen aan de orde.
"Next we will examine how the media promote the public misunderstanding of science, their single-minded passion for pointless non-stories, and their basic misunderstandings of statistics and evidence, which illustrate the very core of why we do science: to prevent ourselves from being misled by our own atomised experiences and prejudices."(6)
Voorbeelden van experimenten waarmee allerlei onzinnige beweringen geloochenstraft kunnen worden. Hier op het terrein van 'detoxification het jezelf ontgiften.
"Now, with findings like these, scientists might take a step back, and revise their ideas about what is going on with the footbaths. We dont really expect the manufacturers to do that, but what they say in response to these findings is very interesting, at least to me, because it sets up a pattern that we will see repeated throughout the world of pseudoscience: instead of addressing the criticisms, or embracing the new findings in a new model, they seem to shift the goalposts and retreat, crucially, into untestable positions.[mijn nadruk]"(10)
"There are experiments, they say, which prove that detox patches do something - but they dont tell you what these experiments consisted of, or what their methods were, they only offer decorous graphs of results."(14)
Technieken om je hersenen beter te laten werken die op vele scholen ook werkelijk gehanteerd worden terwijl ze wertkelijk nergens op gebaseerd zijn.
"This is a vast empire of nonsense infecting the entirety of the British education system, from the smallest primary school to central government, and nobody seems to notice or care."(19)
"Most frighteningly, this teacher sat through a class, being taught this nonsense by a Brain Gym instructor, without challenging or questioning it."(20)
[Dat is de kern van de zaak, vind ik. Waarom stellen mensen geen lastige vragen wanneer er van alles beweerd wordt? Waarom accepteren ze met andere woorden zo gemakkelijk wat andere mensen, de media, etc. allemaal beweren?]
"As it happens, this very phenomenon has been studied in a fascinating set of experiments from the March 2008 edition of the Journal of Cognitive Neuroscience, which elegantly demonstrated that people will buy into bogus explanations much more readily when they are dressed up with a few technical words from the world of neuroscience."(20)
[Met andere woorden: mensen zijn gevoelig voor bluf als het gebeurt met moeilijke woorden. Misschien denken ze dan dat ze te stom zijn om het te begrijpen en houden ze hun mond maar. Onzekerheid. Niet weerbaar genoeg als gevolg van slechte opvoeding en slecht onderwijs.]
"Quacks, of course, are well aware of this, and have been adding sciencey-sounding explanations to their products for as long as quackery has existed, as a means to bolster their authority over the patient (in an era, interestingly, when doctors have struggled to inform patients more, and to engage them in decisions about their own treatment)."(22)
"But more clues can be found in the extensive literature on irrationality. People tend, for example, to rate longer explanations as being more similar to experts explanations. There is also the seductive details effect: if you present related (but logically irrelevant) details to people as part of an argument, this seems to make it more difficult for them to encode, and later recall, the main argument of a text, because their attention is diverted."(22)
"... children are predisposed to learn about the world from adults, and specifically from teachers; they are sponges for information, for ways of seeing, and authority figures who fill their heads with nonsense are sowing the ground, I would say, for a lifetime of exploitation."(23)
"This process of professionalising the obvious fosters a sense of mystery around science, and health advice, which is unnecessary and destructive. More than anything, more than the unnecessary ownership of the obvious, it is disempowering [mijn nadruk]. All too often this spurious privatisation of common sense is happening in areas where we could be taking control, doing it ourselves, feeling our own potency and our ability to make sensible decisions; instead we are fostering our dependence on expensive outside systems and people."(24)
Richt zich vooral op vochtinbrengende middelen die je voor bijna geen geld zelf kunt maken, maar waar de cosmetische industrie een heel circus van gemaakt heeft met magische ingrediënten die verder helemaal niets doen.
"So here we address one of the most important issues in science: how do we know if an intervention works [mijn nadruk]? Whether its a face cream, a detox regime, a school exercise, a vitamin pill, a parenting programme or a heart-attack drug, the skills involved in testing an intervention are all the same. Homeopathy makes the clearest teaching device for evidence-based medicine for one simple reason: homeopaths give out little sugar pills, and pills are the easiest thing in the world to study."(32)
Wat geschiedenis van de homeopatie, met aandacht voor de onderbouwing van de werking van middelen.
"The real question with homeopathy is very simple: does it work? In fact, how do we know if any given treatment is working?"(40)
"So when our homeopathy fan says that homeopathic treatment makes them feel better, we might reply: I accept that, but perhaps your improvement is because of the placebo effect, and they cannot answer No, because they have no possible way of knowing whether they got better through the placebo effect or not. They cannot tell. The most they can do is restate, in response to your query, their original statement: All I know is, I feel as if it works. I get better when I take homeopathy."(41)
"That is why it's important that research is always published, in full, with its methods and results available for scrutiny. This is a recurring theme in this book, and it's important, because when people make claims based upon their research, we need to be able to decide for ourselves how big the methodological flaws were, and come to our own judgement about whether the results are reliable, whether theirs was a fair test. The things that stop a trial from being fair are, once you know about them, blindingly obvious."(48)
"Blood pressure readings are an inexact technique, like ECG interpretation, X-ray interpretation, pain scores, and many other measurements that are routinely used in clinical trials."(49)
Dubbel blinde randomisatie is noodzakelijk om placebo en andere vertekenende invloeden in een onderzoek van een middel te voorkomen.
"Does randomisation matter? As with blinding, people have studied the effect of randomisation in huge reviews of large numbers of trials, and found that the ones with dodgy methods of randomisation overestimate treatment effects by 41 per cent. In reality, the biggest problem with poor-quality trials is not that they've used an inadequate method of randomisation, its that they don't tell you how they randomised the patients at all."(52)
"In fact, as a general rule it's always worth worrying when people don't give you sufficient details about their methods and results."(53)
"There is a moral and financial issue here too: randomising your patients properly doesn't cost money. Blinding your patients to whether they had the active treatment or the placebo doesn't cost money. Overall, doing research robustly and fairly does not necessarily require more money, it simply requires that you think before you start."(55)
"Shang et al. did a very thorough meta-analysis of a vast number of homeopathy trials, and they found, overall, adding them all up, that homeopathy performs no better than placebo."(58)
"In the case of homeopathy, similarly, homeopaths want to believe that the power is in the pill, rather than in the whole process of going to visit a homeopath, having a chat and so on. It is crucially important to their professional identity. But I believe that going to see a homeopath is probably a helpful intervention, in some cases, for some people, even if the pills are just placebos. I think patients would agree, and I think it would be an interesting thing to measure. It would be easy, and you would do something called a pragmatic waiting-list-controlled trial."(60)
"Homeopaths have been careful to keep themselves outside of the civilising environment of the university, where the influence and questioning of colleagues can help to refine ideas, and weed out the bad ones. In their rare forays, they enter them secretively, walling themselves and their ideas off from criticism or review, refusing to share even what is in their exam papers with outsiders.
It is rare to find a homeopath engaging on the issue of the evidence, but what happens when they do? I can tell you. They get angry, they threaten to sue, they scream and shout at you at meetings, they complain spuriously and with ludicrous misrepresentations - time-consuming to expose, of course, but that's the point of harassment - to the Press Complaints Commission and your editor, they send hate mail, and accuse you repeatedly of somehow being in the pocket of big pharma (falsely, although you start to wonder why you bother having principles when faced with this kind of behaviour). They bully, they smear, to the absolute top of the profession, and they do anything they can in a desperate bid to shut you up, and avoid having a discussion about the evidence. They have even been known to threaten violence (I won't go into it here, but I manage these issues extremely seriously)."(63)
"'Much like quackery, placebos became unfashionable in medicine once the biomedical model started to produce tangible results. An editorial in 1890 sounded its death knell, describing the case of a doctor who had injected his patient with water instead of morphine: she recovered perfectly well, but then discovered the deception, disputed the bill in court, and won. The editorial was a lament, because doctors have known that reassurance and a good bedside manner can be very effective for as long as medicine has existed."(64)
"Luckily, its use survived. Throughout history, the placebo effect has been particularly well documented in the field of pain, and some of the stories are striking."(65)
Er wordt nooit een onderzoek opgezet met een vergelijking van een nieuw middel toedienen, een placebo toedienen, en niets doen omdat dat niet ethisch gevonden worden. Zelfs de vergelijking met een placebo wordt al bedenkelijk gevonden. Meestal wordt vergeleken met een bestaand middel om te zien of het nieuwe middel beter voldoet. Maar er zijn wel onderzoeken en meta-analyses rondom het placebo-effect en die worden besproken.
"And here, it seems that this placebo explanation - even if grounded in sheer fantasy - can be beneficial to a patient, although interestingly, perhaps not without collateral damage, and it must be done delicately: assertively and authoritatively giving someone access to the sick role can also reinforce destructive illness beliefs and behaviours, unnecessarily medicalise symptoms like aching muscles (which for many people are everyday occurrences), and militate against people getting on with life and getting better. It's a very tricky area.
I could go on. In fact there has been a huge amount of research into the value of a good therapeutic relationship, and the general finding is that doctors who adopt a warm, friendly and reassuring manner are more effective than those who keep consultations formal and do not offer reassurance. In the real world, there are structural cultural changes which make it harder and harder for a medical doctor to maximise the therapeutic benefit of a consultation. Firstly, there is the pressure on time: a GP can't do much in a six-minute appointment."(76)
"But just as homeopathy has unexpected benefits, so it can have unexpected side-effects. Believing in things which have no evidence carries its own corrosive intellectual side-effects, just as prescribing a pill in itself carries risks: it medicalises problems, as we will see, it can reinforce destructive beliefs about illness, and it can promote the idea that a pill is an appropriate response to a social problem, or, a modest viral illness."(84)
"And at the extreme, when they're not undermining public-health campaigns and leaving their patients exposed to fatal diseases, homeopaths who are not medically qualified can miss fatal diagnoses, or actively disregard them, telling their patients grandly to stop using their inhalers, and to throw away their heart pills. There are plenty of examples, but I have too much style to document them here. Suffice to say that while there may be a role for an ethical placebo, homeopaths, at least, have ably demonstrated that they have neither the maturity nor the professionalism to provide it."(85)
Over allerlei 'bullshit' (in Frankfurt's betekenis) rondom voedsel en voeding van de kant van een nieuw voedingsdeskundigen ('nutritionists').
"For the moment we will focus on nutritionists, members of a newly invented profession who must create a commercial space to justify their own existence. In order to do this, they must mystify and overcomplicate diet, and foster your dependence upon them. Their profession is based on a set of very simple mistakes in how we interpret scientific literature: they extrapolate wildly from laboratory bench data to make claims about humans; they extrapolate from observational data to make intervention claims; they cherry-pick; and, lastly, they quote published scientific research evidence which seems, as far as one can tell, not to exist."(86)
"The food supplement industry has engineered itself a beneficent public image, but this is not borne out by the facts. Firstly, there is essentially no difference between the vitamin industry and the pharmaceutical and biotech industries (that is one message of this book, after all: the tricks of the trade are the same the world over)."(108)
"If I was writing a lifestyle book it would have the same advice on every page, and youd know it all already. Eat lots of fruit and vegetables, and live your whole life in every way as well as you can: exercise regularly as part of your daily routine, avoid obesity, dont drink too much, dont smoke, and dont get distracted from the real, basic, simple causes of ill health. But as we will see, even these things are hard to do on your own, and in reality require wholesale social and political changes."(110)
"... to anyone who knows even the slightest bit about science, she is a joke. (...) ... the food-guru industry, with its outlandish promises, moralising and sexual obsessions, goes back at least two centuries."(111)
"At the same time, for over five years now, newspapers and television stations have tried to persuade us, with science, that fish-oil pills have been proven to improve childrens school performance, IQ, behaviour, attention, and more. In fact, nothing could be further from the truth."(136)
"Fish oils, meanwhile, are now the most popular food supplement product in the UK, with annual sales for that single product worth over 110 million a year. And the Kellihers recently sold Equazen to a major pharmaceutical corporation for an undisclosed sum. If you think I have been overly critical, I would invite you to notice that they win."(159)
"While Gillian McKeith leads the theatrical battalions, Patrick Holford is a very different animal: he is the academic linchpin at the centre of the British nutritionism movement, and the founder of its most important educational establishment, the Institute for Optimum Nutrition. This organisation has trained most of the people who describe themselves as nutrition therapists in the UK."(160)
[Vergelijkbare kritiek als op McKeith, opnieuw met vele voorbeelden van nonsense beweringen, onterechte beschuldigingen bij die kritiek, etc..]
"This chapter is not an isolated case. There is an entire website - Holfordwatch - devoted to examining his claims in eye-watering detail, with breathtaking clarity and obsessive referencing. There you will find many more errors repeated in Holfords other documents, and carefully dissected with wit and slightly frightening pedantry. It is a genuine joy to behold."(173)
"This chapter did not appear in the original edition of this book, because for fifteen months leading up to September 2008 the vitamin-pill entrepreneur Matthias Rath was suing me personally, and the Guardian, for libel."(183)
Rath verloor en moet de kosten betalen van al het juridische gedoe. Dit hoofdstuk gaat over wat deze pillendraaier allemaal beweerde over kanker, AIDS etc..
"There is a good evidence base, for example, to show that needle-exchange programmes reduce the spread of HIV, but this strategy has been rejected time and again in favour of Just say no. Development charities funded by US Christian groups refuse to engage with birth control, and any suggestion of abortion, even in countries where being in control of your own fertility could mean the difference between success and failure in life, is met with a cold, pious stare. These impractical moral principles are so deeply entrenched that Pepfar, the US Presidential Emergency Plan for AIDS Relief, has insisted that every recipient of international aid money must sign a declaration expressly promising not to have any involvement with sex workers."(191)
"The alternative therapy movement as a whole has demonstrated itself to be so dangerously, systemically incapable of critical self-appraisal that it cannot step up even in a case like that of Rath: in that count I include tens of thousands of practitioners, writers, administrators and more. This is how ideas go badly wrong."(198)
"Doctors can be awful, and mistakes can be murderous, but the philosophy driving evidence-based medicine is not. How well does it work? One thing you could measure is how much medical practice is evidence-based. This is not easy. From the state of current knowledge, around 13 per cent of all treatments have good evidence, and a further 21 per cent are likely to be beneficial.(...) it turns out, depending on speciality, that between 50 and 80 per cent of all medical activity is evidence-based."(199-200)
Probleem is de manier waarop de farmaceutische industrie omgaat met informatie en bewijs rondom onderzoek.
"Whatever our political leanings, everyone is basically a socialist when it comes to healthcare: we all feel nervous about profit taking any role in the caring professions, but that feeling has nowhere to go. Big pharma is evil: I would agree with that premise. But because people don't understand exactly how big pharma is evil, their anger and indignation get diverted away from valid criticisms - its role in distorting data, for example, or withholding life-saving AIDS drugs from the developing world - and channelled into infantile fantasies. Big pharma is evil, goes the line of reasoning, therefore homeopathy works and the MMR vaccine causes autism. This is probably not helpful."(202)
"People come in many flavours, but all corporations have a duty to maximise their profits, and this often sits uncomfortably with the notion of caring for people."(202)
"It is tempting to blame the drug companies - although it seems to me that nations and civic organisations are equally at fault here for not coughing up - but wherever you draw your own moral line, the upshot is that drug companies have a huge influence over what gets researched, how it is researched, how the results are reported, how they are analysed, and how they are interpreted."(205)
Beschrijving van alle truuks die uitgehaald worden in dat onderzoek om zo positief mogelijke resultaten te krijgen.
"Whats truly extraordinary is that almost all of these problems - the suppression of negative results, data dredging, hiding unhelpful data, and more - could largely be solved with one very simple intervention that would cost almost nothing: a clinical trials register, public, open, and properly enforced."(219)
"We have covered many of the themes elsewhere: the seductive march to medicalise everyday life; the fantasies about pills, mainstream and quack; and the ludicrous health claims about food, where journalists are every bit as guilty as nutritionists. But here I want to focus on the stories that can tell us about the way science is perceived, and the repetitive, structural patterns in how we have been misled.
My basic hypothesis is this: the people who run the media are humanities graduates with little understanding of science, who wear their ignorance as a badge of honour."(222)
"In the aggregate, these breakthrough stories sell the idea that science - and indeed the whole empirical world view - is only about tenuous, new, hotly contested data and spectacular breakthroughs. This reinforces one of the key humanities graduates parodies of science: as well as being irrelevant boffinry, science is temporary, changeable, constantly revising itself, like a transient fad. Scientific findings, the argument goes, are therefore dismissible."(234)
"Worse than that, where there is controversy about what the evidence shows, it reduces the discussion to a slanging match, because a claim such as MMR causes autism (or not), is only critiqued in terms of the character of the person who is making the statement, rather than the evidence they are able to present. There is no need for this, as we shall see, because people are not stupid, and the evidence is often pretty easy to understand."(237)
Over het misbruiken van statistiek.
"It is the peculiar and perpetual error of the human understanding to be more moved and excited by affirmatives than negatives."(242)
1. We see patterns where there is only random noise.
2. We see causal relationships where there are none.(...)
3. We overvalue confirmatory information for any given hypothesis.
4. We seek out confirmatory information for any given hypothesis.(...)
5. Our assessment of the quality of new evidence is biased by our previous beliefs."(242-245)
"Now that you appreciate the value of statistics - the benefits and risks of intuition - we can look at how these numbers and calculations are repeatedly misused and misunderstood. Our first examples will come from the world of journalism, but the true horror is that journalists are not the only ones to make basic errors of reasoning. Numbers, as we will see, can ruin lives."(250)
Risico's kunnen heel verschillend weergegeven worden (als natuurlijke frequenties, als relatieve risicotoename, als absolute risicotoename), waardoor dat risco heel verschillend overkomt ook al is het hetzelfde.
"... when reporting on a risk: I want to know who you're talking about (e.g. men in their fifties); I want to know what the baseline risk is (e.g. four men out of a hundred will have a heart attack over ten years); and I want to know what the increase in risk is, as a natural frequency (two extra men out of that hundred will have a heart attack over ten years). I also want to know exactly what's causing that increase in risk - an occasional headache pill or a daily tub full of pain-relieving medication for arthritis. Then I will consider reading your newspapers again instead of blogs which are written by people who understand research, and which link reliably back to the original academic paper, so that I can double-check their precis when I wish."(253)
"There are many ways in which journalists can mislead a reader with science: they can cherry-pick the evidence, or massage the statistics; they can pit hysteria and emotion against cold, bland statements from authority figures. The MRSA stings of 2005 come as close to simply making stuff up as anything I've stumbled on so far."(269)
"The MRSA swab scandals were a simple, circumscribed, collective hoax. MMR is something much bigger: it is the prototypical health scare, by which all others must be judged and understood. It has every ingredient, every canard, every sleight of hand, and every aspect of venal incompetence and hysteria, systemic and individual."(280)
"I have no great interest in whether one individuals work was ethically dubious: the responsibility for the MMR scare cannot be laid at the door of a single man, however much the media may now be trying to argue that it should.
The blame lies instead with the hundreds of journalists, columnists, editors and executives who drove this story cynically, irrationally, and wilfully onto the front pages for nine solid years. As we will see, they overextrapolated from one study into absurdity, while studiously ignoring all reassuring data, and all subsequent refutations. They quoted experts as authorities instead of explaining the science, they ignored the historical context, they set idiots to cover the facts, they pitched emotive stories from parents against bland academics (who they smeared), and most bizarrely of all, in some cases they simply made stuff up."(281)
Het betreft de relatie tussen de vaccinatie van kinderen ('combined measles, mumps, and rubella (MMR) vaccine' in het Engels) en (de toename van) autisme. Maatschappelijk verzet tegen vaccinatieprogramma's is van alle tijden.
"The diversity and isolation of these anti-vaccination panics helps to illustrate the way in which they reflect local political and social concerns more than a genuine appraisal of the risk data: because if the vaccine for hepatitis B, or MMR, or polio, is dangerous in one country, it should be equally dangerous everywhere on the planet; and if those concerns were genuinely grounded in the evidence, especially in an age of the rapid propagation of information, you would expect the concerns to be expressed by journalists everywhere. They're not."(284)
Over het onderzoek door Wakefield ea.:
"We are all entitled to our clinical hunches, as individuals, but there was nothing in either this study of twelve children, or any other published research, to suggest that giving single vaccines would be safer."(286)
"Its hardly surprising that the MMR vaccination rate has fallen from 92 per cent in 1996 to 73 per cent today. In some parts of London its down to 60 per cent, and figures from 2004-05 showed that in Westminster only 38 per cent of children had both jabs by the age of five."(311)
"Its not the spectacular individual stories that are the problem, so much as the constant daily grind of stupid little ones. This will not end, and so I will now abuse my position by telling you, very briefly, exactly what I think is wrong, and some of what can be done to fix it."(319)
Is vooral een kritiek op de media en hoe mensen daarmee omgaan.