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Wakefield's Wake Part 2: Passionate parents of autistic children can be tricky sources

Wakefield's Wake Part 2: Passionate parents of autistic children can be tricky sources

Picture of William Heisel

Anyone who has written about a topic as emotional as autism knows that patients and their families can be both invaluable and unreliable.

Brian Deer has known this from early in his reporting on the vaccine-autism hoax perpetrated by Andrew Wakefield and his colleagues. As Antidoteexplained on Wednesday, Deer made great use of a wide array of documentsfor his latest investigative series in the BMJ. (The second part of the series provides a helpful timeline at the bottom of the page.) He also traveled all over Britain (and out of the country) to track down the families of children who were involved in the study.

The way Deer approached those parents, handled their stories and dealt with pressure from them to blame the vaccines for their children's disorders is instructive for health writers and investigators looking for ways to fix some of the damage done by Wakefield.

The first thing Deer did right was assuming nothing. He did not assume that patients or their families knew how their information had been used by Wakefield and his colleagues. One of the most stunning findings in the first part of Deer's series comes in the first paragraph:

When I broke the news to the father of child 11, at first he did not believe me. "Wakefield told us my son was the 13th child they saw," he said, gazing for the first time at the now infamous research paper which linked a purported new syndrome with the measles, mumps, and rubella (MMR) vaccine. "There's only 12 in this."

Read that paragraph again. Deer showed this father the study for the first time, presumably not long before this piece was published in 2010. The paper in question was published in 1998.

This should serve as a lesson to health writers everywhere never to assume that the research subjects involved in a study actually saw the outcome of the study. Those subjects, should you be able to track them down, could provide the necessary evidence for verifying – or disproving – the study's findings or probing flaws in the study's design.

How did Deer get these parents to talk?

He treated them respectfully, but he also didn't turn off his critical faculties. Too many reporters have taken patient stories as gospel instead of asking them for proof the same way a reporter would ask any other source.

The poster child for a lawsuit launched against vaccine makers in Britain was a boy, referred to as child 2, who was touted, as Deer writes, as "prime example of the purported bowel and brain syndrome," meaning that problems in the gut caused by the vaccine were leading to brain disorders. Deer carefully shows how the mother of this boy had been sent to Wakefield by an "anti-vaccine campaign called JABS."

Deer pressed the mother to be specific about when the boy's symptoms had started. The timing was important because Wakefield's claims in The Lancet of a connection depended in symptoms starting within a one to 14 day window after vaccination with the measles, mumps and rubella (MMR) vaccine. Deer published a snippet of his interview with the mother that shows exactly how a reporter should handle a patient or patient advocate while reporting a story that has these potentially far-reaching consequences:

"When did that begin, do you think?" I asked.

"That began after a couple of months, a few months afterward, but it was still, it was concerning me enough, I remember going back . . ."

"Sorry. I don't want to be, like, massively pernickety, but was it a few months, or a couple of months?"

"It was more like a few months because he'd had this, kind of, you know, slide down. He wasn't right. He wasn't right. Before he started."

"Not quicker than two months, but not longer than how many months? What are we talking about here?"

"From memory, about six months, I think."

Deer wrote that the mother had complained to his editors about how Deer had handled the interview. "But I was perplexed by her story, since there was no case in the Lancet that matched her careful account," he wrote. "According to the paper, child 2 had his ‘first behavioural symptom' two weeks, not six months, after MMR."

Deer was right to be skeptical and, more importantly, to follow the trail to its sad conclusion: the books had been cooked.

One of the parents of one of the autistic children studied by Wakefield was actually in business with Wakefield, Deer found. Before his controversial – and now retracted – study was even published, Wakefield was creating a business venture that would produce a diagnostic test for the bowel-brain disorder he said caused autism and would create a measles vaccine he claimed would be safer.

The father of the subject researchers referred to as child 10 stood to reap 22.2% of any profits the company made.

Next: Trust patients' stories, but verify them with medical records

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Wakefield's Wake, Part 1: Media should help undo damage from vaccine-autism hoax

Wakefield's Wake, Part 3: Trust parents of autistic kids, but verify stories with health records

Wakefield's Wake, Part 4: Overcome confidentiality rules used to hide shaky science

Comments

Picture of Ken Reibel

Too many reporters have taken patient stories as gospel instead of asking them for proof the same way a reporter would ask any other source.

Bingo! And those stories usually contain the phrase "Some parents say..." It's how reporters sneak false balance into their reporting. We read that science has overwhelmingly rejected the vaccine/autism hypothesis, followed by "but still, some parents are convinced their children were developing normally until after their shots." But what does "after their shots" mean - 24 hours later? A week later? A year later?

Parental recall of symptom onset is notoriously unreliable, yet it is one of the pillars upon which the anti-vaccine movement rests.

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[...] Wakefield's Wake, Part 2: Passionate parents of autistic children can be tricky sources [...]

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[...] a look at the anti-vaccine movement. For the most part, these are people dealing with a heartbreaking illness in the best way they know how, despite all the evidence that says they’re wrong. But they say the evidence is manufactured [...]

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