by Ben Goldacre
I’m not just spelling this out for the benefit of the lay reader: by the time of the outbreak in 2005, young doctors needed to be reminded of the symptoms and signs of mumps, because it had been such an uncommon disease during their training and clinical experience. People had forgotten what these diseases looked like, and in that regard vaccines are a victim of their own success—as we saw in our earlier quote from Scientific American in 1888, five generations ago (see page 276).
Whenever we take a child to be vaccinated, we’re aware that we are striking a balance between benefit and harm, as with any medical intervention. I don’t think vaccination is all that important: even if mumps orchitis, infertility, deafness, death and the rest are no fun, the sky wouldn’t fall in without MMR. But taken on their own, lots of other individual risk factors aren’t very important either, and that’s no reason to abandon all hope of trying to do something simple, sensible and proportionate about them, gradually increasing the health of the nation, along with all the other stuff you can do to the same end.
It’s also a question of consistency. At the risk of initiating mass panic, I feel duty bound to point out that if MMR still scares you, then so should everything in medicine, and indeed many of the everyday lifestyle risk exposures you encounter: because there are a huge number of things which are far less well researched, with a far lower level of certainty about their safety. The question would still remain of why you were so focused on MMR. If you wanted to do something constructive about this problem, instead of running a single-issue campaign about MMR you might, perhaps, use your energies more usefully. You could start a campaign for constant automated vigilance of the entirety of the NHS health records dataset for any adverse outcomes associated with any intervention, for example, and I’d be tempted to join you on the barricades.
But in many respects this isn’t about risk management, or vigilance: it’s about culture, human stories, and everyday human harms. Just as autism is a peculiarly fascinating condition to journalists, and indeed to all of us, vaccination is similarly inviting as a focus for our concerns: it’s a universal programme, in conflict with modern ideas of ‘individualised care’; it’s bound up with government; it involves needles going into children; and it offers the opportunity to blame someone, or something, for a dreadful tragedy.
Just as the causes of these scares have been more emotional than anything else, so too has much of the harm. Parents of children with autism have been racked with guilt, doubt and endless self-recrimination over the thought that they themselves are responsible for inflicting harm upon their own child. This distress has been demonstrated in countless studies: but so close to the end, I don’t want to introduce any more research papers.
There is one quote that I find—although she would perhaps complain about my using it—both moving and upsetting. It’s from Karen Prosser, who featured with her autistic son Ryan in the Andrew Wakefield video news release from the Royal Free Hospital in 1998. ‘Any mother who has a child wants it to be normal,’ she says. ‘To then find out your child might be genetically autistic is tragic. To find out that it was caused by a vaccine, that you agreed to have done…is just devastating.’
AND ANOTHER THING
I could go on. As I write this in May 2008, the media are still pushing a celebrity-endorsed ‘miracle cure’ (and I quote) for dyslexia, invented by a millionaire paint entrepreneur, despite the abysmal evidence to support it, and despite customers being at risk of simply losing their money anyway, because the company seems to be going into administration; the newspapers are filled with an amazing story about a finger that ‘grew back’ through the use of special sciencey ‘pixie dust’ (I quote again), although the claim has been around for three years, unpublished in any academic journal, and severed fingertips grow back by themselves anyway; more ‘hidden data’ scandals are exposed from the vaults of big pharma every month; quacks and cranks continue to parade themselves on television quoting fantastical studies to universal approbation; and there will always be new scares, because they sell so very well, and they make journalists feel alive.
To anyone who feels their ideas have been challenged by this book, or who has been made angry by it—to the people who feature in it, I suppose—I would say this: You win. You really do. I would hope there might be room for you to reconsider, to change your stance in the light of what might be new information (as I will happily do, if there is ever an opportunity to update this book). But you will not need to, because, as we both know, you collectively have almost full-spectrum dominance: your own slots in every newspaper and magazine in Britain, and front-page coverage for your scare stories. You affect outsider swagger, bizarrely, from the sofas of daytime television. Your ideas—bogus though they may be—have immense superficial plausibility, they can be expressed rapidly, they are endlessly repeated, and they are believed by enough people for you to make very comfortable livings, and to have enormous cultural influence. You win.
It’s 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.
The process of obtaining and interpreting evidence isn’t taught in schools, nor are the basics of evidence-based medicine and epidemiology, yet these are obviously the scientific issues which are most on people’s minds. This is not idle speculation. You will remember that this book began by noticing that there has never been an exhibit on evidence-based medicine in London’s Science Museum.
A five-decade survey of post-war science coverage in the UK by the same institution shows—and this is officially the last piece of data in the book—that in the 1950s science reporting was about engineering and inventions, but by the 1990s everything had changed. Science coverage now tends to come from the world of medicine, and the stories are of what will kill you, or save you. Perhaps it is narcissism, or fear, but the science of health is important to people, and at the very time when we need it the most, our ability to think around the issue is being energetically distorted by the media, corporate lobbies and, frankly, cranks.
Without anybody noticing, bullshit has become an extremely important public health issue, and for reasons that go far beyond the obvious hysteria around immediate harms: the odd measles tragedy, or a homeopath’s unnecessary malaria case. Doctors today are keen—as it said in our medical school notes—to work ‘collaboratively with the patient towards an optimum health outcome’. They discuss evidence with their patients, so that they can make their own decisions about treatments.
I don’t generally talk or write about being a doctor—it’s mawkish and tedious, and I’ve no desire to preach from authority—but working in the NHS you meet patients from every conceivable walk of life, in huge numbers, discussing some of the most important issues in their lives. This has consistently taught me one thing: people aren’t stupid. Anybody can understand anything, as long as it is clearly explained—but more than that, if they are sufficiently interested. What determines an audience’s understanding is not so much scientific knowledge, but motivation: patients who are ill, with an important decision to make about treatment, can be very motivated indeed.
But journalists and miracle-cure merchants sabotage this process of shared decision-making, diligently, brick by brick, making lengthy and bogus criticisms of the process of systematic review (because they don’t like the findings of just one), extrapolating from lab-dish data, misrepresenting the sense and value of trials, carefully and collectively undermining the nation’s understanding of the very notion of what it means for there to be evidence for an activity. In this regard they are, to my mind, guilty of an unforgivable crime.
You’ll notice, I hope, that I’m more interested in the cultural impact of nonsense—the medicalisation of everyday life, the undermining of sense—and in general I blame systems more than particular people. While I do go through the background of
some individuals, this is largely to illustrate the extent to which they have been misrepresented by the media, who are so desperate to present their favoured authority figures as somehow mainstream. I am not surprised that there are individual entrepreneurs, but I am unimpressed that the media carry their assertions as true. I am not surprised that there are people with odd ideas about medicine, or that they sell those ideas. But I am spectacularly, supremely, incandescently unimpressed when a university starts to offer BSc science courses in them. I do not blame individual journalists (for the most part), but I do blame whole systems of editors, and the people who buy newspapers with values they profess to despise. Specifically, I do not blame Andrew Wakefield for the MMR scare (although he’s done things I hope I would not), and I find it—let’s be very clear once again—spectacularly distasteful that the media are now revving up to hold him singly responsible for their own crimes, in regard to that debacle.
Similarly, while I could reel out a few stories of alternative therapists’ customers who’ve died unnecessarily, it seems to me that people who choose to see alternative therapists (except for nutrition therapists, who have worked very hard to confuse the public and to brand themselves as conventional evidence-based practitioners) make that choice with their eyes open, or at least only half closed. To me this is not a situation of businessmen exploiting the vulnerable, but is rather, as I seem to keep saying, a bit more complicated than that. We love this stuff, and we love it for some fascinating reasons, which we could ideally spend a lot more time thinking and talking about.
Economists and doctors talk about ‘opportunity costs’, the things you could have done, but didn’t, because you were distracted by doing something less useful. To my mind, the greatest harm posed by the avalanche of nonsense we have seen in this book is best conceived of as the opportunity cost of bullshit’.
We have somehow become collectively obsessed with these absurd, thinly evidenced individual tinkerings in diet, distracting us from simple healthy eating advice; but more than that, as we saw, distracting us from the other important lifestyle risk factors for ill health which cannot be sold, or commodified.
Doctors, similarly, have been captivated by the commercial success of alternative therapists. They could learn from the best of the research into the placebo effect, and the meaning response in healing, and apply that to everyday clinical practice, augmenting treatments which are in themselves also effective: but instead, there is a fashion among huge numbers of them to indulge childish fantasies about magic pills, massages or needles. That is not forward-looking, or inclusive, and it does nothing about the untherapeutic nature of rushed consultations in decaying buildings. It also requires, frequently, that you lie to patients. ‘The true cost of something,’ as the Economist says, ‘is what you give up to get it.’
On a larger scale, many people are angry about the evils of the pharmaceutical industry, and nervous about the role of profit in healthcare; but these are formless and uncalibrated intuitions, so the valuable political energy that comes from this outrage is funnelled—wasted—through infantile issues like the miraculous properties of vitamin pills, or the evils of MMR. Just because big pharma can behave badly, that does not mean that sugar pills work better than placebo, nor does it mean that MMR causes autism. Whatever the wealthy pill peddlers try to tell you, with their brand-building conspiracy theories, big pharma isn’t afraid of the food supplement pill industry, it is the food supplement pill industry. Similarly, big pharma isn’t frightened for its profits because popular opinion turned against MMR: if they have any sense, these companies are relieved that the public is obsessed with MMR, and is thus distracted from the other far more complex and real issues connected with the pharmaceutical business and its inadequate regulation.
To engage meaningfully in a political process of managing the evils of big pharma, we need to understand a little about the business of evidence: only then can we understand why transparency is so important in pharmaceutical research, for example, or the details of how it can be made to work, or concoct new and imaginative solutions.
But the greatest opportunity cost comes, of course, in the media, which has failed science so spectacularly, getting stuff wrong, and dumbing down. No amount of training will ever improve the wildly inaccurate stories, because newspapers already have specialist health and science correspondents who understand science. Editors will always—cynically—sideline those people, and give stupid stories to generalists, for the simple reason that they want stupid stories. Science is beyond their intellectual horizon, so they assume you can just make it up anyway. In an era when mainstream media is in fear for its life, their claims to act as effective gatekeepers to information are somewhat undermined by the content of pretty much every column or blog entry I’ve ever written.
To academics, and scientists of all shades, I would say this: you cannot ever possibly prevent newspapers from printing nonsense, but you can add your own sense into the mix. Email the features desk, ring the health desk (you can find the switchboard number on the letters page of any newspaper), and offer them a piece on something interesting from your field. They’ll turn you down. Try again. You can also toe the line by not writing stupid press releases (there are extensive guidelines for communicating with the media online), by being clear about what’s speculation in your discussions, by presenting risk data as ‘natural frequencies’, and so on. If you feel your work—or even your field—has been misrepresented, then complain: write to the editor, the journalist, the letters page, the readers’ editor, the PCC; put out a press release explaining why the story was stupid, get your press office to harrass the paper or TV station, use your title (it’s embarrassing how easy they are to impress), and offer to write them something yourself.
The greatest problem of all is dumbing down. Everything in the media is robbed of any scientific meat, in a desperate bid to seduce an imaginary mass who aren’t interested. And why should they be? Meanwhile the nerds, the people who studied biochemistry but who now work in middle management at Woolworths, are neglected, unstimulated, abandoned. There are intelligent people out there who want to be pushed, to keep their knowledge and passion for science alive, and neglecting them comes at a serious cost to society. Institutions have failed in this regard. The indulgent and well-financed ‘public engagement with science’ community has been worse than useless, because it too is obsessed with taking the message to everyone, rarely offering stimulating content to the people who are already interested.
Now you don’t need these people. Start a blog. Not everyone will care, but some will, and they will find your work. Unmediated access to niche expertise is the future, and you know, science isn’t hard—academics around the world explain hugely complicated ideas to ignorant eighteen-year-olds every September—it just requires motivation. I give you the CERN podcast, the Science in the City mp3 lecture series, blogs from profs, open access academic journal articles from PLOS, online video archives of popular lectures, the free editions of the Royal Statistical Society’s magazine Significance, and many more, all out there, waiting for you to join them. There’s no money in it, but you knew that when you started on this path. You will do it because you know that knowledge is beautiful, and because if only a hundred people share your passion, that is enough.
FURTHER READING AND ACKNOWLEDGEMENTS
I have done my absolute best to keep these references to a minimum, as this is supposed to be an entertaining book, not a scholarly text. More useful than references, I would hope, are the many extra materials available on www.badscience.net, including recommended reading, videos, a rolling ticker of interesting news stories, updated references, activities for schoolchildren, a discussion forum, everything I’ve ever written (except this book, of course), advice on activism, links to science communication guidelines for journalists and academics, and much more. I will always try to add to it as time passes. There are some books which really stand out as genuinely excellent, and I am going to use my last ink to send
you their way. Your time will not bo wasted on them.
Testing Treatments by Imogen Evans, Hazel Thornton and Iain Chalmers is a book on evidence-based medicine specifically written for a lay audience by two academics and a patient. It is also free to download online from www.jameslindlibrary.org. How to Read a Paper by Professor Greenhalgh is the standard medical textbook on critically appraising academic journal articles. It’s readable, short, and it would be a best-seller if it wasn’t unnecessarily overpriced.
Irrationality by Stuart Sutherland makes a great partner with How We Know What Isn’t So by Thomas Gilovich, as both cover different aspects of social science and psychology research into irrational behaviour, while Reckoning with Risk by Gerd Gigerenzer comes at the same problems from a more mathematical perspective.
Meaning, Medicine and the ‘Placebo Effect’ by Daniel Moerman is excellent, and you should not be put off by the fact that it is published under an academic imprint.
There are now endless blogs by like-minded people which have sprung from nowhere over the past few years, to my enormous delight, onto my computer screen. They often cover science news better than the mainstream media, and the feeds of some of the most entertaining fellow-travellers are aggregated at the website badscienceblogs.net. I enjoy disagreeing with many of them—viciously—on a great many things.
And lastly, the most important references of all are to the people by whom I have been taught, nudged, reared, influenced, challenged, supervised, contradicted, supported, and most importantly entertained. They are (missing too many, and in very little order): Emily Wilson, Ian Sample, James Randerson, Alok Jha, Mary Byrne, Mike Burke, Ian Katz, Mitzi Angel, Robert Lacey, Chris Elliott, Rachel Buchanan, Alan Rusbridger, Pat Kavanagh, the inspirational badscience bloggers, everyone who has ever sent me a tip about a story on [email protected], Iain Chalmers, Lome Denny, Simon Wessely, Caroline Richmond, John Stein, Jim Hopkins, David Colquhoun, Catherine Collins, Matthew Hotopf, John Moriarty, Alex Lomas, Andy Lewis, Trisha Greenhalgh, Gimpy, shpalman, Holfordwatch, Positive Internet, Jon, Liz Parratt, Patrick Matthews, Ian Brown, Mike Jay, Louise Burton, John King, Cicely Marston, Steve Rolles, Hettie, Mark Pilkington, Ginge Tulloch, Mattfiew Tait, Cathy Flower, my mum, my dad, Reg, Josh, Raph, Allie, and the fabulous Amanda Palmer.