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25Apr 2011

NYT Magazine: Autism, vaccines, and a story that should not have been written

As anyone who writes for a living knows, one of the most important decisions a writer makes is one a reader never sees: the decision to do one story rather than another--or to do no story at all. Critics who like to deconstruct articles to show a writer's bias might not realize that such biases are often more clearly revealed in story choices than in anything a writer writes. A decision, for example, to do a perfectly balanced, objective story on the hazards of nuclear power in the wake of Fukushima, will send a message that nuclear power is dangerous. Or a writer could decide not to do a story--a writer who, perhaps, thinks a detailed examination of Fukushima would unfairly tar nuclear energy, no matter how the writer tried to balance the story.

In the same way, we could imagine the decision a writer might make about a doctor who has been accused of medical ethics violations and scientific impropriety, who has lost his job and his medical license, who has fled his country and been accused of setting medical research back 10 years--and of endangering children. One might decide not to write a story about such a person, especially if that person is widely known and the story has been told dozens or hundreds of times before.

Or one might decide to write the story. Such a story--if done fairly--would balance some of the horrors, such as the time "he lined up kids to give blood samples at the birthday party of one of his children" because "he needed a control group of children..." It might also, for balance, paint a sympathetic portrait of a man who, despite adversity, clings to his beliefs, who has "a mild professorial air," and who, "broad-shouldered and fair at 54, he still has the presence of the person he once was: a conventional winner, the captain of his medical school’s rugby team, the head boy at the private school he attended in England." A man who "has become one of the most reviled doctors of his generation" but--but!--whose followers "applauded wildly" when he took the stage recently, and who say, “We stand by you!” and “Thank you for the many sacrifices you have made for the cause!” A man who "has depended on his followers for financing and for the emotional scaffolding that allows him to believe himself a truth-teller when the majority of his peers consider him a menace to medicine."

This is the story Susan Dominus wrote in The New York Times Magazine yesterday. The story is about Andrew Wakefield, the British doctor whose report in The Lancet in 1998 was largely responsible for fueling the anti-vaccine furor that has led countless parents around the world to refuse to vaccinate their children, out of concern that vaccines might cause autism. The quotes are from her story, which, in my view, goes a long way toward restoring Wakefield's image as a kindly, misunderstood doctor who simply wants to protect children. Despite the balance, despite the recitation of Wakefield's sins, Dominus has written a story that will persuade many readers that maybe Wakefield is not such a bad guy at all, even if, as she writes, among many other things, that he failed "to disclose financing from lawyers who were mounting a case against vaccine manufacturers."

As any reporter should know, a "study" of a few children proves nothing, and a study of a handful of children that has found no confirmation and has indeed been roundly and extensively rebutted might not deserve yet another hearing for its author in the press.

Dominus needs no instruction from me about fairness and objectivity, but she must know that her story is far from objective. We're too sophisticated here to blame Dominus for the headline, but the editors call Wakefield "an autism guru." That's where a writer might stand up and protest, and maybe Dominus did so, and lost.

Every strand of evidence concerning Wakefield and his "study" suggests that it proved nothing and succeeded only as a touchstone for agonized parents of children with autism, desperate for anything that might help their children, or, at the very least, make of their suffering something that would help other children.

That is not the message that Dominus conveys. The Wakefield story has been told over and over again. The critics and Wakefield's supporters have debated the issue for more than a decade--every side of this story has been minutely examined. Most recently the British medical journal BMJ did an investigation and concluded, as it said in a headline, that "Wakefield's article linking MMR vaccine and autism was fraudulent."

So why would the Times do this story now?

Here's why not to do it: I believe that this story will prompt more parents to refuse to vaccinate their children. Some of those children will suffer or die from illnesses that the vaccines would have prevented.

Stories have consequences, and it's often difficult to predict what those might be. I could be wrong about this. But I would have stayed far, far away from this story.

- Paul Raeburn

Comments

Nice to see good work happening in Mr. Raeburn's back yard at Florida Atlantic University: a presentation yesterday at the Macarthur Campus by Robert Naseef, PhD on and for "Families of Children with Autism."
http://doepartnership.usf.edu/trainings_10_11/FAU_Naseefflyer_043011rev.pdf

Some years back Dr. Naseef made a perceptive comment that seems newly relevant in light of subsequent and truly overwhelming condemnation of Wakefiled in the corporate media.

Not to set science back ten or twenty more years, but the plea for more study, for good evidence-based research, sounds as reasonable and desirable as ever. Dr. Naseef stated, "we need objective research about the vaccines independent of the scientists who have financial links to the pharmaceutical industry."

http://www.specialfamilies.com/response_to_time.htm

Who knows what he thinks now? Maybe some intrepid science journalist in Dr. Naseef's neighborhood will investigate and get back to us.

Cheers,
Scott

Barry Bergman, a former newspaper and magazine writer, sent me an interesting email about the Times story. With his permission, I’m posting it here:

Hi Paul,

Enjoyed your Knight Science Journalism Tracker take on the NYT mag’s Wakefield “profile.” I put the word in quotes because the thing that struck me about the article — and which neither you nor any of the commenters noted — was the remarkable dearth of first-hand observation about its subject. The direct quotations are mostly irrelevant, virtually all anodyne and rarely (never?) more than a single sentence. Almost without exception, her observations seem to have been made from a great distance: She finds him “both industrious and remote” and “mildly professorial” while he works on his laptop in a church; she suggests he’s paranoid based (illogically, BTW) on his annoyance at his GPS, yet never offers so much as a rough paraphrase to show he believes his critics are “out to get him”; he has “a large dog” and “a very tall son”; she speculates on the son’s reasons for not going into medicine without ever having asked him about it; etc. The most extensive Wakefield quotes in the article, in fact, are drawn from a YouTube video — about which, typically, she also speculates, without bothering to ask Wakefield if he thought he’d been “naive,” “arrogant” or none of the above.

All of which suggests to me some professional variation on “the dog ate my homework.” That is, either (a) her recorder crapped out and/or she lost her notes, forcing her to reconstruct her interviews using only direct quotes of fewer than five words, or (b) Wakefield imposed severe restrictions — including no recorders, no notes and no questions he hadn’t already answered a thousand times before, unless they concerned the view from his back deck — in exchange for something resembling access. These theories are about as plausible as Wakefield’s, I admit — my other one is that Dominus herself got lost on the way to Texas, and dreamed the whole thing — but I can’t come up with any better explanations for how a NYT reporter could spend so much time with a profile subject and come back with so little.

Any thoughts?

Thanks,
Barry Bergman

Rosie,

Thanks for joining the fray. As I said, the comments seem to break down into two groups. I take the point that the story can be read in different ways, but I still worry about the possible consequences of this piece. Dominus might have said much more about why and how Wakefield has been discredited, but she didn't.

I agree with Tom and Lee on this: I didn't feel that the article portrayed Wakefield in a flattering light, and it didn't seem out-of-left-field to profile a man who continues to be revered and believed in face of all the to-the-contrary evidence (to the point where his champions threaten "we will hurt you" (or whatever the precise words were) if the article doesn't turn out to be favorable) --and to profile a man who started something that does not seem to die in the face of lots of evidence that would suggest it's long past time that people focus their research efforts elsewhere.
I'll admit to being very curious myself about who Wakefield is and how he can continue to hold fast to his beliefs, and I read the article from start to finish.
I do agree that it's not clear how others would take the article and that it's possible they would interpret the attention as continuing to lend legitimacy to something that does not merit it. But then, so does every new "no link between vaccines and autism" study that money and effort is expended on. And there is a very clear and important social phenomenon here: a flawed experiment started something that will not die, and it has public health ramifications. So even though the matter may have gone to bed scientifically, it has not done so in a sociological or public health manner.

I wish I'd said what you said, Stephen--that there is no scientific controversy here. That was settled long ago.

Stories like this one legitimize the "controversy." Readers, I expect, don't distinguish between "public controversy" and scientific controversy.

Folks,

Thanks for the thoughtful comments. I see some of your read the story I did, and others thought it properly portrayed Wakefield. Fair enough.

A couple of points:

Lee, I did not say that we should ignore the people responsible for this controversy. I am saying that I prefer the BMJ's coverage to that of the Times.

And I'm still puzzling over "cereal-spitting" so I'm glad Brandon set it aside...

Totally agree, i feel it exactly the same.

I'm with Tom on this. Cereal-spitting headline aside, I thought the article portrayed Wakefield as someone who was dead wrong and widely reviled, with most reasonable people disagreeing mostly over whether he was wrong in good faith or in cynical, manipulative bad faith; and yet, despite this, he's still embraced by a small but significant community of people. The potent mix of zealotry, desperation, mistrust and ignorance fueling their embrace is as important a topic as Wakefield himself, and it comes through.

Whatever the merits or flaws of this particular profile, you seem to be making a broader point about news coverage that I find troubling: that a responsible journalist should cover this continuing public health controversy by ignoring the people responsible for it. To answer the rhetorical question you pose in your post here, I suspect the New York Times did this story now precisely because despite a decade of efforts to set people straight about this, the misconceptions --- oddly and heart-breakingly -- persist. For better or worse, Wakefield is the cause of this and remains a public figure whose behavior and motives should be examined in public light.

Kudos to Paul. Why *would* the Times do this story now? When I read the headline, I nearly threw up my breakfast. Honestly, how could they?

I would like to offer a slightly different view. This post by Paul Raeburn is extremely thoughtful and well reasoned, and the remarks about what subjects writers choose and choose not to tackle were terrific. But when I read the Dominus piece, I did not feel that it restored Wakefield's reputation in any way. Instead, I found myself reading the descriptions of him in various settings and marveling at how he is able to carry on his charade. Then again, I imagine that most readers of this site, like me, already know it's a charade, and would read the article looking for supporting facts. Perhaps the truest test of the Dominus article would be the reaction of "regular" people who had somehow managed not to be well informed on this issue.

Amen to that

Well done, Paul! This is so, so exactly on point!!

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