Monday, August 06, 2007

Did Scoop Campbell Pull a Brizendine? More on Science and Journalism

monorail cat is out of service
There have been lots of tedious stories in the news about the alleged chattiness of women and the Trappist-like qualities of men. One of the major sources for this recent nonsense is Louann Brizendine.
The San Francisco Chronicle took the appearance of the new paper in Science about women's and men's chattiness as a prompt for a front-page story last Friday (July 6), and of course got some quotes from San Francisco resident and myth spreader Louann Brizendine. Quotes of astonishing disingenuousness, it turns out. Brizendine's newest story is this:
My book is really about hormones, and that one line [about women uttering three times as many words per day as men] has been taken out of context. It's fascinating, anytime you talk about sex differences, it's controversial. But the bottom line is, there are more similarities than differences between men and women.
So first she claims to be just an ordinary working endocrinologist. Then, like a politician caught on tape saying something derogatory about negroes, she plays the "I-was-taken-out-of-context" card. Next, she ruminates in wonderment at the controversiality of the whole topic (could it be the fault of the press, perhaps, pumping all this up?), and then, in a dramatic big-lie U-turn, she endorses the "more-similarities- than-differences" position that properly belongs to her critics...

[I]t's Brizendine now who is the hunter of the origins of the myth — a myth that she now implies she has almost nothing to do with!
Scoop Campbell is responsible for a new myth, that of the wretched 1 in 58 prevalence for autism among UK schoolchidren (see, e.g., this discussion about autism and MMR on WDDTY). Campbell is also responsible for significant inaccuracies about the content and safety profile of vaccines. Yet, it is Campbell who has produced a Special Report for Those Confused By Muddled Medical Research; first amongst those muddlers who are responsible for such confusion would be Scoop Campbell.
many media reports last week [detailed] new medical or scientific research on key health issues. Some involve real breakthroughs, others are more questionable.

'The public ends up very confused,' says Professor Jack Winkler, a sociologist of science at London Metropolitan University. 'Every week we are told about some new wonder ingredient in our diet that's different to the one we read about a year ago.'
A UKDietitian has responded (comment 2), arguing that:
Campbell's attempts to disguise his central role in the 'muddled world of medical research' - with regards autism last week and nutrition this week - by pointing the finger elsewhere fails miserably.

It's ironic that this article - just like his MMR article that preceded it - demonstrates beautifully the central role of the journalist (and this one in particular) of perpetuating 'muddle'.
Is this an elaborate ruse for Scoop Campbell to claim that although mistakes were made, they were not by him, it's the fault of pesky scientists and their muddled research? Not his muddled research for his journalism, nor his lack of understanding of even the basics of his subject-matter? Not his fault for failing to check his sources and materials with relevant principals?

Has Campbell pulled a Brizendine yet, or will that only be true the next time that he purports to inform the public understanding of MMR, autism or vaccinations?

How much of this can be attributed to newspapers failing to educate their readers in how to distinguish reputable sources of information and well-validated research? How much responsibility do newspapers accept for muddling health and medical news that has plausible physiological/scientific mechanisms and those that do not?

Back in 2005, Mark Liberman argued that we would raise standards in science reporting by lowering them. Liberman has a very well-worked out plan, but if Campbell is anything to go by, the mainstream media has little interest in the public understanding of science, choosing to concentrate on what science and health have to offer in the way of fodder for the gaping maw of newsrotica (an obsession with salacious news stories).

Other than scoopmania, is there a neologism that captures sloppy, sensationalised reporting of health and science?

Scienceblogs host many good discussions about science. However, too frequently, there is little discussion about the science, more the public statement of different views and the interpretation/rejection of publications in line with the respective writers' or commenters' confirmation bias. In non-specialist fora, the science discussion has a distressing tendency to favour the more attractive narrative rather than the scientific plausibility.

There is more to be said about whether journalism is changing and the issue of wisdom v. ignorance in networked crowds. Scoop Campbell is thought-provoking in some ways - it is a shame that it is more about his potential emulation of Brizendine rather than a positive contribution to the public understanding of science.

Related reading

Wakefield: another triumph for mainstream journalism in the UK
Autism: The Truth Plus Sensitivity, Specificity and All That Is Decent to Reveal About Predictive Values
The British Medical Journal Embarrasses Itself by Reproducing That Notorious 1 in 58 Figure
Ben Goldacre Breaks His Silence on the Media Coverage of the MMR, Autism Stories
Observer Gives A PoMo Clarification: Retract Already
Anthony Cox: How virulent were The Observer’s MMR articles?
Myth: Measles Is A Trivial Illness, There's No Point to Vaccination
MMR Vaccine Does Not Contain Mercury, Thiomersal, Thimerosal and It Never Has
Myth: Autism Omnibus Hearings Have Not Included Evidence About MMR
The Observer Still Doesn't Understand Corrections of Fact
Confused by 'Muddled Medical Research'? Scoop Campbell to the Rescue

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Sunday, August 05, 2007

Confused by 'Muddled Medical Research'? Scoop Campbell to the Rescue

Black and white image of a revolving door: text on the floor reads, 'I'm afraid of revolving doors'
Scoop Campbell was the trigger for St. Maximilian Kolbe and Blessed Titus Brandsma Day: once The Observer had published those notorious pieces, it guaranteed abysmal coverage of the issue for the next 100 days. Following Campbell's fine example, other staff from The Observer duly obliged with failed clarification upon failed clarification and no adequate apology although one of these articles has now disappeared from the archives seemingly related to legal enquiries.

Jon of Holford Watch has been remarkably diligent about following up on factual errors with The Observer's Readers' Editor but it seems that Steve Pritchard is still not ready to acknowledge that Campbell erred in points of fact, and that Pritchard's attempts to deny this are increasingly ludicrous.

Campbell was wrong. The article that was so egregious that Healthbolt has styled it as a hoax has been withdrawn.
The zombie autism/MMR thing is back. In the new BMJ, Ben Goldacre tells the appalling story of an article in the UK's Observer newspaper that claimed new research had found the prevalence of autism to be much higher than previously believed -- 1 in 58 -- and that "leading researchers" thought this might be due to the MMR vaccine. None of the above was true. Period. The article can only be described as hoax. The study found no such thing, one of the "leading researchers" had no such opinion, and the other, who is not even part of the study team, works for Andrew Wakefield, the doctor who started the whole thing with a fraudulent paper in The Lancet many years ago, which has been withdrawn. [My emphasis.]
There are still errors of fact-not interpretation, fact-in the article that is still available in the archives. These errors are serious enough to pollute the public understanding of issues that are relevant to public health, namely the composition and safety profile of vaccines.

This weekend, we have learned that there is yet another outbreak of measles among unvaccinated children. One of the reasons that some parents have declined to vaccinate their children is the sensationalist reporting of an unsubstantiated link between vaccinations and autism; reporting that has been untempered by subsequent reports that find that there is no evidence for such a link.

So, it is with spectacularly bad timing that the The Observer carries a Special Report by Campbell: Confused by health advice? Then read on. It beggars belief that somebody perceived a need for clear guidance on important matters of public health and the cry went up, "Send for Scoop Campbell; nobody does it like him!".
It kills you; no, it does you good. Hang on, here's another report that says ... Denis Campbell looks at the muddled world of medical research
Seriously, that's what it says. One has to assume that the sub-editor has a tongue-in-cheek sense of humour in such matters. It reads like an apt description of Campbell's knowledge of the matters that he is writing about in the assumed capacity of expert mediator between scientists and the public. It is not always true that medical research is muddled. Many substances and interventions have both advantages and disadvantages; it's a somewhat sophisticated argument but it should not be beyond the wit of Observer journalists to write with appropriate qualifiers and nuances.

As it is, for Campbell to be The Observer's journalist of choice seems like breathtaking incompetence or arrogance. I feel that they have let loose someone with the subtle understanding of science that invites comparisons with Margaret Cavendish, Duchess of Newcastle and her remarkable musings on What is liquid?
All that doth flow we cannot liquid name
Or else would fire and water be the same;
But that is liquid which is moist and wet
Fire that property can never get.
Then 'tis not cold that doth the fire put out
But 'tis the wet that makes it die, no doubt.
Just how much contempt does The Observer have for its readers? Well, enough to ignore what might have been an excellent opportunity to retract Campbell's completely erroneous report, that must have 'baffled' many, that there is a 1 in 58 prevalence of autism among UK schoolchildren. Le Canard Noir is not easily stirred, but he has been moved to describe this article as "barefaced cheek, hypocrisy and cowardice". Quite.

It is past time that Pritchard and Campbell paid attention to the hoardes of people who are waving correction slips at them. Is it time to pick up the virtual pitchforks and flaming torches in the form of more corrections and besiege the citadel of the Readers' Editor's office?

Update 14:00: Le Canard Noir is sufficiently irritated that he has added an Observer-MMR Non-Apology Counter to his front page.

Related reading

Wakefield: another triumph for mainstream journalism in the UK
Autism: The Truth Plus Sensitivity, Specificity and All That Is Decent to Reveal About Predictive Values
The British Medical Journal Embarrasses Itself by Reproducing That Notorious 1 in 58 Figure
Ben Goldacre Breaks His Silence on the Media Coverage of the MMR, Autism Stories
Observer Gives A PoMo Clarification: Retract Already
Anthony Cox: How virulent were The Observer’s MMR articles?
Myth: Measles Is A Trivial Illness, There's No Point to Vaccination
MMR Vaccine Does Not Contain Mercury, Thiomersal, Thimerosal and It Never Has
Myth: Autism Omnibus Hearings Have Not Included Evidence About MMR
The Observer Still Doesn't Understand Corrections of Fact

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Saturday, August 04, 2007

The Observer Still Doesn't Understand Corrections of Fact

To recap: on July 8, The Observer sullied its reputation as a quality newspaper by publishing two articles that were breathtakingly inaccurate. They added to their ignominy by subsequently issuing clarifications that were nothing of the sort (neither apologising nor clarifying).

Along with many other people, I wrote to The Observer to correct some inaccuracies. My email is as follows; I have yet to receive an acknowledgement and these matters are still outstanding.

From: Shinga
Date: 08-Jul-2007 12:32
Subject: Corrections to Campbell's Articles
To: Readers' Editor

Dear Sir/Madam,

I'm sure that you will receive many well-founded objections to the two companion pieces by Denis Campbell. I wish to comment on some of the many factual errors in these pieces but shall concentrate on the Wakefield interview in this post.

The factual errors are so numerous that even picking this short selection at random yields several examples:
Critics point out that the US court case is not about the MMR vaccine itself but centres on the use of a preservative called thimerosal, which contains 50 per cent mercury and until a few years ago was added to routine vaccinations given to children in the US under one. Crucially, it has never been an element of the MMR vaccine here.
The Autism Omnibus Hearings have included extensive discussion of the MMR vaccine. The various experts for both the petitioners and respondents have discussed the MMR vaccine, the claimed presence of wild or vaccine strain measles virus in biological samples, and various hypotheses that include biological mechanisms for the contribution of thiomersal/thimerosal and MMR vaccines in the aetiology of autism. Some examples follow; all quotations are from the court transcripts (pdf files):

Mr Matanoski of the legal team for the Secretary of Health and Human Services discussed MMR in his resumed opening comments on Day 6:
We want you to be sure in your own mind that MMR vaccine is not causing autism because you've had good evidence to look at and
consider on that...[pg 10 of 345]

A serious accusation has been leveled. A serious accusation has been leveled against an important part of the public health arsenal against a preventable disease. An accusation has been leveled that MMR vaccine causes autism. That accusation must be answered, and we will answer it...

This accusation goes against a vaccine that is designed to prevent a killing disease. [pg 11 of 345]

...we are going to put on the evidence this morning and throughout this week that will allow you to effectively deal with that and to show you that MMR vaccine is indeed safe. [pg 16 of 345]

You heard from Dr. Hepner [one of the petitioners' expert witnesses: Day 3], and frankly, I think the PSC [Petitioners' Steering Committee] may have cringed at one part of her testimony, that is, when she said that MMR vaccine causing autism is an unproven hypothesis. [pg 18 of 345]
Similarly, on Day 12, Mr Powers, for the Petitioners Steering Committee (PSC), said:
You have a case here [the Cedillo case] that is a test case for the theory, the general theory that a combination of exposure to thimerosal-containing vaccines with a significant dose of ethyl mercury early in a child's life, combined then with MMR, can result in a complex system response that present symptoms that can get diagnosed as autism.

And in particular a suppressed immune system from the thimerosal in the vaccines, the introduction of the attenuated live measles virus then persists, and the persistence of that virus leading to a complex biological process of disease...
[pg 19 of 49 or 2887]
From the same transcript of Day 12, Mr Matanoski:
You need to find whether Michelle Cedillo's autism occurred before her vaccine. You need to find whether the PSC has proven that autistic spectrum disorders can be caused by MMR.

Whether or not there's inflammation in Michelle's Cedillo bowel or intestines, you need to find whether or not MMR can cause autistic spectrum disorder. [pg 30 of 49 or 2898]
Prof. Bustin's testimony is entirely concerned with the discussion of whether or not the findings of measles virus in the biological samples (a foundation stone of the work of Wakefield and those who claim to have replicated his findings) can be relied upon. In brief, he discusses his investigations and the expert report that he had prepared for the UK MMR litigation; he reports that the Unigenetics findings are unsound.

It is unusual for a misunderstanding to be so widely propagated that an government agency has to issue a clarification that a substance has never been part of a vaccination, but the FDA has done that for thimerosal and MMR.

MMR is a live vaccine, it would be unwise to add the thimerosal preservative to it because it would inactivate it and render it useless. Thiomersal/thimerosal any similar mercury compounds have never been a component of MMR anywhere.

Amidst the many complaints that you may receive about these articles, it would be helpful to correct these errors.

I know that other people (notably Jon of Holford Watch) have contacted Readers' Editor Steve Pritchard of The Observer with similar concerns and they have received unsatisfactory replies. I may well discuss some of these responses tomorrow if The Observer continues to fail to correct/retract those pieces. However, for now, I will remark that the only proper response to Pritchard's latest response is to be scornful. For a hint as to the tenor of the response, assume that the Readers' Editor requires us to believe that the informed reading public has misinterpreted Scoop Campbell's writings, rather than that Campbell made a mistake or that Pritchard erred in supporting him. Pritchard seems to have overlooked that if Jon's interpretation erred, and mine erred, then so did David Batty's (who reproduced some of those facts in a piece for The Guardian, a piece that has now been edited to remove those claims).

It defies belief that a credible Readers' Editor for a quality broadsheet can have a writing style that makes Scoop Campbell's look subtle and sophisticated coupled with New York Governor Eliot Spitzer's instinct for framing a sincere apology (albeit Pritchard seems to believe that the mistake lies with the readers/correspondents, not the staff). Pritchard's attitude is the more incomprehensible when one considers that one of these infamous articles has already been withdrawn for unspecified reasons that may be related to possible legal investigations.

I find this issue particularly irritating in the context of a recent, thoughtful article in Seed Magazine the outlines the difficulties faced by science journalists in developing countries:
Science and technology writers in the developing world are taking on issues that have profound implications for the countries and emerging economies in which they report. One need think only of the African AIDS crisis, climate change, prescription-drug access, agricultural biotechnology, bird flu, and many other specific science issues that have huge importance for the developing world. Perhaps the most crucial issue in places like Africa and South Asia is health policy, which is inextricably intertwined with social progress--more-productive nations tend to be those whose citizens are healthier and live longer. Philip Hilts, a former science and medical reporter for both the New York Times and the Washington Post who has spent many years working in developing countries, observed that as health improves, wealth follows. By informing governments, NGOs, and the international community about their countries' health policies, science writers in the developing world are performing a job that's fundamental to international development.

Yet despite having such a critical role to play, in many cases science journalists from the developing world face a series of hurdles that I, comfortably ensconced in Washington, D.C., simply never encounter. For some of these writers, basic research resources like cheap and reliable telephone service, libraries, and even dictionaries can be scarce. And while the physical act of researching and writing can present dramatic logistical challenges, science correspondents in some parts of the world are also faced with the worry that offending despotic or corrupt governments will result in retribution...

The specific challenges faced by the science journalist—getting access to scientists, getting them to talk about their work, the work of their peers, or recent studies and their implications—are also more difficult to overcome.
I have not complained about matters of interpretation in the above email but about facts that are easily checked and verified. Campbell, Pritchard and their support staff on The Observer are awash with resources. MMR, the safety of the vaccination programme, autism, and children's health are all significant areas for public concern and journalism in these areas has a particular significance and responsibility. As Fiona Fox explained, they could have had access to all the scientific expertise that they wanted to check facts both big and small, and to talk through the likely implications of those articles. If they were to compare their resources to those of their colleagues in other countries, then that is an additional cause for shame.

Related reading

Wakefield: another triumph for mainstream journalism in the UK
Autism: The Truth Plus Sensitivity, Specificity and All That Is Decent to Reveal About Predictive Values
The British Medical Journal Embarrasses Itself by Reproducing That Notorious 1 in 58 Figure
Ben Goldacre Breaks His Silence on the Media Coverage of the MMR, Autism Stories
Observer Gives A PoMo Clarification: Retract Already
Anthony Cox: How virulent were The Observer’s MMR articles?
Myth: Measles Is A Trivial Illness, There's No Point to Vaccination
MMR Vaccine Does Not Contain Mercury, Thiomersal, Thimerosal and It Never Has
Myth: Autism Omnibus Hearings Have Not Included Evidence About MMR

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Thursday, August 02, 2007

Where's Molly and the Rest of That Generation?

Book cover for Unstrange MindsAutism Diva has a thought-provoking post with many poignant links about the issues raised by Where's Molly? Where are the others?
One day in 1957, when Jeff Daly was 6 years old, his little sister Molly, disappeared.

Every night at dinner, he would ask his parents the same question, "Where's Molly?"

Every night, he says, he received the same answer: "Stop asking about Molly."

Decades later, Daly learned that his parents had sent Molly to a state institution nine days before her third birthday. Nearly 50 years later, Daly found his sister and made a documentary about his search.

"Since the movie, literally hundreds of people have come up to us and said, 'I had a [relative] that I remember my family talking about that was sent away. Do you know how we can find out about that person?'" says Daly...

There's a timeline that explains that in 1967 about 195,000 people, half of whom were children were institutionalized for being disabled, many of them would have been diagnosable as autistic by today's standards. Many of the were treated brutally and died in those institutions of the actions of drugs and of neglect and disease.
Reading the remainder of Autism Diva's post, I'm reminded how strange it is when I hear people ask, "If there is no epidemic of autistic spectrum disorders, where are all the older ASDs?". My mother's family was the lynchpin for many others. My grandmother held a 'come all ye' that was open to all friends, relatives and neighbours every Friday evening. My mother recalled that every weekend, although most people returned home after the evening, they had around 25 people staying over with them; the children would top-and-tail in the beds and others would sleep wherever they could fashion a sleeping space. The come all ye was primarily a social event but it also provided food and regular respite for relatives who were caring for those who needed 'special care and attention' (as it was known).

It sounds rather Gormenghast but my mother's childhood home had a large and comfortable basement level. An assortment of friends and relatives lived in the basement at various times. By report, they included people who had fallen on hard times (but social delicacy forbade discussion of this) along with those who didn't like noise, being surrounded by others, or busy visual scenes. They ate with the family as they chose, or took their meals down with them. Some of them had particular aptitudes and roles for which they were accepted and praised for their contribution to the household. One of the young men took over all of the endless mangling of the laundry and helped out with the extensive vegetable preparation that took place before every family meal (he would prepare the vegetables in the basement kitchen or would occasionally do it upstairs if my grandmother would promise not to sing, and my gregarious great-grandfather were not present). Another was known to be a dab hand at keeping the machinery running in the local dockyards.

When I was a child, most extended families had a couple of relatives who needed 'special care and attention' from other family members. Families who were separated from their extended families sometimes had children who 'disappeared' (this seemed to happen in new build estates that were created to meet the post-war housing shortage). Depending on their age, some of these children may have been to Children's Homes. Older children tended to disappear to Borstal (if male) or a 'home for wayward boys and girls'; others went to residential schools when they became too large or heavy to be managed at home by their mother.

A few years ago, I met someone who was horrified to discover that her husband had a sister whom he hadn't seen since he was a very young child. Somewhere in the early 60s, the sister had regressed when she was around two-years old. She spent hours at a time, running around the perimeter of the garden. She was terrified if people laughed, either in the same room or on the television. One day, the family took her to a residential home and thereafter, although the parents visited twice a year, her brother found it to be too upsetting and stopped seeing her. After the new bride found out about the sister, she started to visit her. Her husband accompanied her but would wait in the car during the visit; he was still unable to see his sister.

Autism Diva has provided a poignant example of Roy Grinker's argument in Unstrange Minds that there is no epidemic of autism. Kristina Chew presents a good overview of Grinker's findings. Both Chew and Grinker wrote an essay that is well worth reading: If There’s No Autism Epidemic, Where are all the Adults with Autism?
Just where might those 1 in 150 adults with autism be?

As surprising as it may seem, they are living and working among us.

Some live at home with their aging parents or siblings. Some live in group homes, or in institutions. Some have jobs and live independently. Many have the diagnoses given to them when they were children, such as mental retardation, seizure disorder, or schizophrenia. Recently, one of us met a severely autistic 60 year old woman in eastern Tennessee, who we’ll call Donna. Donna’s internist diagnosed her with autism ten years ago, when she was 50. Her mother said that Donna’s first label, in 1950, was “mentally retarded with emotional block and obsessive compulsive traits.” Today, for the purposes of public assistance, she is classified as mentally retarded.

There is no record anywhere to suggest that Donna is “autistic.”
Like Autism Diva, I wonder how many people like Molly there are in the UK. I wonder how many people are puzzled as to the identity of young children in photo albums.

Edited: August 4. Kristina Chew has told us about JP and other invisible or disappeared children.

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