Mammography Screening: truth, lies and controversy. Radcliffe Publishing, 2012
Peter C Gøtzsche, Professor, Director, MD, DrMedSci, MSc
Nordic Cochrane Centre, Copenhagen firstname.lastname@example.org
This book would be invaluable for anyone who wants to understand the breast screening controversy. It offers an in-depth look at research (what can make it robust or flawed, written in lay language) along with examples linked to the screening controversy. It also gives an eye-opening, personal account of what happens when voices are raised to question the wisdom of continuing, unchanged, an established NHS procedure when robust research has shown it to be extremely harmful.
At the press conference launch of his book, Peter Gotzsche had this to say:
‘I have arranged this press conference to tell you about what some researchers believe is one of the biggest health care scandals for decades, namely mammography screening.
Hundreds of millions of women all over the world have been seduced into attending screening without knowing it could harm them. This violation of their human rights is the main reason we, at the Nordic Cochrane Centre in Copenhagen, have done so much research on mammography screening and also why I have written a book describing the scientific controversies and the political manoeuvres.
The main reason why some people call it a scandal is that the women have been consistently misinformed about screening. The benefit has been much exaggerated, and the women have not been told about the substantial harms. The people who have perpetrated this scandal are not only those involved in screening programmes who should be committed to honestly informing women, but also some prolific scientists who have distorted the facts to an unbelievable degree, often deliberately, as it is clear they must have known better.
The collective dishonesty started right from the beginning. Dr Angela Raffle, consultant in public health for the national screening programmes in the United Kingdom, spoke at a Europa Donna conference in Milan in 1997, and at the end of her talk, a Radiologist Screening Director from the Netherlands stood up and said ‘Dr Raffle I disagree with everything you say, we have to lie to women’. Raffle asked why, and the Screening Director replied, ‘Because if we don’t lie they won’t come.’
In the mid-nineties, Professor Michael Baum, who set up the first breast screening centre in the United Kingdom in 1988, had resigned from the NHS Breast Screening Programme’s steering committee when he was informed by the deputy Chief Medical Officer that if the women were told all the facts they might not come and then the service wouldn’t reach the critical 70% uptake level.
In contrast to the way in which women are being deceived, men are being completely and honestly informed about prostate cancer screening. They are told about its serious harms in terms of overdiagnosis and overtreatment of harmless cancers that would never have presented a problem, but the treatment of which often leads to permanent impotence, and sometimes incontinence.
I wonder why there is such a pronounced gender difference? Women do not want to be patronised, or fobbed off with unbalanced, inadequate information, but to be treated with respect, so that they can make up their own minds about screening. Just like men can.
For some years, I kept a folder labelled Dishonesty in breast cancer screening on top of my filing cabinet, storing scientific articles and letters to the editor that contained statements I knew were dishonest. Eventually I gave up on the idea of writing a paper about this collection, as the number of examples quickly exceeded what could be contained in a single paper. In 2009, at a cancer meeting in London, I heard wildly exaggerated claims about the benefits of breast screening that I knew were not true. I therefore decided to write a book about the science and politics of breast screening. The book is written in a way that enables lay people to understand how screening advocates develop their rationale and then be able to understand what is wrong with them. The book also gives plenty of examples of ad hominem attacks, intimidation, slander, threats of litigation, deception, dishonesty, lies and other violations of good scientific practice employed by some screening advocates.
My book explains in detail why mammography screening is unlikely to be effective today. This has been shown convincingly in recent rigorous studies that have compared screened areas with non-screened areas with comparable populations, and compared screened age groups with non-screened age groups.
There are three major reasons why screening is no longer effective. First and foremost, since the time when most of the randomised trials were performed, our treatments have improved considerably and they are effective whether or not the cancer has spread. Second, women attend a doctor much earlier today than 25 years ago when they have noticed anything unusual in their breast. Third, diagnosis and treatment of breast cancer has become centralised leading to better quality of performance.
Perhaps the most important message in the book is this one. What is much more important than detecting cancer a little earlier is to decrease its occurrence. Paradoxically, screening does just the opposite. It produces many patients with breast cancer from among healthy women who would have remained breast healthy for the rest of their lives if they had not attended screening. This overdiagnosis is so extensive that if the women did not attend screening, the occurrence of breast cancer would be reduced by one-third in the screened age groups. Thus avoiding going to screening is the most effective method we have to reduce the occurrence of breast cancer.
This leads to my conclusion. I believe time has come to realise that breast screening programmes can no longer be justified. When I say this, I almost always get the answer: ‘What would you then recommend the women to do?’ To which my standard reply is: ‘Nothing, apart from attending a doctor if they notice anything unusual. And why are you worried? People don’t think it is a problem that we recommend men not to get screened for prostate cancer.’
The deaths of young middle-aged women are tragic, but the answer to this tragedy is not screening, but better treatment. We should also remember that breast cancer accounts for only about 3% of all deaths in women, and then often at an age when deaths from other causes are increasingly common. This means that the women might have died from something else if they had not died from breast cancer. Cardiovascular disease, for example, is far more likely to kill women than breast cancer.
The reason women worry so much about breast cancer is that they have been exposed to the one-sided screening propaganda for so long. It is time to tell them the truth.