Critics Slam PBS, NYT Autism Reports

Mnookin: “A reckless and irresponsible coda to Robert MacNeil’s career”

A PBS Newshour series about autism that drew former host Robert MacNeil back to the show for the first time in sixteen years is also drawing heavy criticism.

Parts of the six-part “Autism Now” series, which launched on April 18, revive the widely refuted theory that vaccines cause the developmental disorder, which leads to the impairment of social and communications skills and generally appears in the first three years of a child’s life. Moreover, in a number of instances MacNeil flouts principles of thorough, transparent reporting.

“If it turns out to be MacNeil’s swan song, it’ll be an embarrassing coda to his career,” wrote Seth Mnookin on the blog for his recently published book, Panic Virus, which criticized those who encourage irrational fears about a connection between vaccines and autism.

In fact, there are things to commend about MacNeil’s series, such as Part Four and Part Five, which respectively highlight the need for more educational resources for autistic children and for more support for autistic adults. However, as a superb review by the Los Angeles Times’s James Rainey (who recently won the 2010 Bart Richards Award for Media Criticism) points out, “MacNeil distracts from the central power of the series when he allows a reintroduction” of the vaccine-autism canard:

In Part I of MacNeil’s series, which aired April 18, MacNeil let his daughter Alison [whose six-year-old son, Nick, has autism] raise the possibility of a connection between the shots the boy received at 15 months and his subsequent “shutdown.” In a later episode, two of four researchers interviewed by MacNeil leave open the possibility that some subset of children could be harmed by vaccines — though they acknowledge there is not yet any proof.

MacNeil immediately followed his daughter’s opening-night statement by telling the audience that “public health authorities say there is no scientifically valid evidence that vaccines cause autism,” a position he repeated during a later episode, when he added: “All epidemiological studies have proved negative.”

So one might ask the venerable newsman, now 80: Then why even raise the vaccine issue, especially without any meaningful caution to parents about the downsides of a failure to immunize? Experts say that the reduction in vaccination rates has led to increased incidence of measles, whooping cough and other diseases.

“We have not done a series about vaccines. We have done a series about autism,” MacNeil told Rainey by phone. “I think we put the issue in perspective. But to not even allow it to be mentioned would have been extraordinary. To not even mention it?”

Of course, MacNeil does much more than mention the theory. He emphasizes it. Indeed, every expert he interviews tells him there are probably multiple causes of autism. They also stress that each case may depend on a particular combination of risk factors that could be genetic, environmental (chemical toxins, infectious agents, etc.), or nutritional, among other things. Yet the only hypothesis that comes up more than once or receives any special consideration whatsoever is vaccines.

What seems to sway MacNeil is a supposed change of heart at the federal organization that monitors and advises about research related to autism spectrum disorder. According to MacNeil in Part Three of the NewsHour’s series:

Public health officials have steadily maintained that there is no valid science evidence of such a connection. All epidemiological studies have proved negative. But now, bowing to public opinion, the body that sets priorities in autism research, the Interagency [Autism] Coordinating Committee, has recommended studies to determine whether small subgroups might be more susceptible to environmental exposures, including vaccines.

MacNeil makes the same assertion in a promotional interview with a PBS colleague, Hari Sreenivasan, saying that the group “has just now, in March, recommended that research be done” on the alleged subgroup that are vulnerable to immunizations. But there are two big problems with these statements. First, beyond mentioning the committee’s recommendation, MacNeil provides absolutely no context about what types of studies should be pursued, how those studies should be designed, or where they would fit within the much, much larger fields of vaccine-safety and autism research.

What MacNeil was referring to was the Interagency Autism Coordinating Committee’s annual “Strategic Plan for Autism Spectrum Disorder Research,” which was released in January, not March. It stresses again and again that there is no evidence for a casual relationship between vaccines and autism in the general population, and that the connection has not yet been proven even for smaller subgroups thought to be vulnerable. In his review for the Times, Rainey reported that when he pressed MacNeil about the committee’s recommendations, he “conceded that additional research does not yet prove anything.”

The committee also notes that other factors such as “parental age and exposure to infections, toxins, and other biological agents may confer environmental risk” and need to be researched. And it highlights the fact that many members of the public feel that “limited autism research funds” would be better spent exploring other avenues of causality and/or treatments, services, and support for those with autism. So MacNeil is guilty of an error of omission, but he’s also guilty of an error of commission.

The second big problem with his statements about that committee’s recommendations is that he makes them seem like a new development. They are not. The committee has been making basically the same statements about the need for some vaccine-autism research focused on subgroups in strategic plans going back at least to 2008, when a report from the Institute of Medicine—an independent, nonprofit organization that is part of the National Academies—recommended designing studies that could identify small subpopulations at risk from environmental exposures. Acting like something has changed in order to create an artificial news hook is misleading and irresponsible.

Journalist David Kirby—who has long urged the medical community not to ignore vaccines—used the same ploy last month in a column for The Huffington Post, alleging that the interagency committee “has signaled a shift in research priorities into the causes of autism, moving away from genetic studies in favor of investigating the interaction between genes and environmental factors, which it said could include toxins, biological agents and vaccines.” This is disingenuous. Yes, there are new studies coming up, but research priorities have been slowly “shifting” toward epigenetics for years.

Kirby’s post, though, is primarily about a February report by the Centers for Disease Control and Prevention (CDC) that outlines five-year research needs, where “neurodevelopmental disorders, including spectrum disorder” is one of thirty immunization safety topics. There is little sense of where it ranks, priority-wise, among all the others (though a reporter could ask).

Recommendations that the National Vaccine Advisory Committee (part of the Department of Health and Human Services) gave to the CDC in 2009 advised that researchers focus on those with “regressive autism, wherein children achieve normal developmental milestones in language and social skill until 18-24 months of age, and subsequently lose those milestones or experience a plateau in terms of development.” The advisory committee further noted that several studies have estimated that that group comprises about 15 percent of all cases of autism spectrum disorder [ASD] and that “the temporal occurrence of this regression and the vaccination schedule is not evidence of a causal relationship, but regressive autism does fit the recommendations of the [Institute of Medicine] committee for further research in rigorously defined subsets of ASD.”

The NewsHour should have include at least some of this background. Unfortunately, MacNeil’s reporting failed to provide any context about the federal research guidelines that he considered so revelatory. He also fails to provide context about sources. At one point in Part One, his daughter Allison talks about her son, who received three standard vaccinations at fifteen months and then says:

People say to me, Alison, it’s a coincidence. Alison, how do you know this happened? Well, it’s impossible for me to know. But what I will say is this: It was not a coincidence that my child was diagnosed with autism at the same time that his whole system shut down. Something happened to my child.

“At that point, an impartial reporter might have asked why, if Alison was uncertain, she started a blog titled “My Vaccine Injured Child,” Mnookin wrote on his Panic Virus blog.

Alison’s advocacy came up only in a follow-up Q&A with Sreenivasan, MacNeil’s colleague at PBS. “All right,” the latter said. “Now, since you also brought your family into it, it kind of opened up another line of criticism that we saw in some of the comments regarding your daughter, her opinions on autism and how that did or didn’t influence you.” To which MacNeil replied:

… I wasn’t promoting anything. I was trying to be a reporter. The fact that my daughter believes what she believes about vaccines is her belief. I love her.

I think differently. I’ve tried to bring to bear a lot of habits learned over many years as a journalist and look at the whole thing objectively. So, when she says in the first program that’s what she thought, I say immediately, yes, but medical science says that there is no evidence of such a connection. All the epidemiological studies do not prove a connection.

Yet there was clearly an undisclosed conflict of interest at play, especially since Alison attempted to capitalize on her father’s star power to support her advocacy work. In what Mnookin called “Exhibit A” in why MacNeil’s series has been “reckless and irresponsible,” Alison and SafeMinds—a nonprofit advocacy group that claims, despite much evidence to the contrary, that thimerosal, which has been removed from most vaccines, is related to the development of autism—issued a press release headlined, “Daughter of Journalist Robert MacNeil States that Son Regressed Into Autism After Vaccines.”

“Notice that it does not say ‘Alison MacNeil believes that son regressed into autism after vaccines,’ or ‘Family member featured on Newshour believes son regressed into autism after vaccines,’” Mnookin observed. “Instead, it invokes a trusted, even revered, newsman and links his name to the ‘statement’ that a child’s autism was called by vaccines.”

Mnookin also criticized MacNeil for not providing enough context about one of his expert sources, Martha Herbert, an assistant professor of neurology at Harvard Medical School and a pediatric neurologist with subspecialty certification in neurodevelopmental disabilities at the Massachusetts General Hospital in Boston.

MacNeil and the NewsHour are not the only ones catching flak for their autism coverage. On April 20, The New York Times Magazine published a feature profile of Andrew Wakefield, the British doctor who fuelled fears of a link between vaccines and autism with a 1998 paper published in the medical journal The Lancet. Last year, the British General Medical Council revoked his license to practice medicine because of professional misconduct, including dishonesty and the unethical treatment of child test subjects. The Lancet immediately retracted the 1998 paper. In January, the British Medical Journal published a series by Brian Deer, a Sunday Times reporter whose investigations prompted the General Medical Council’s inquiry, laying out what the journal’s editors called “an elaborate fraud.” Wakefield is now living Austin, still pushing his debunked theories to crowds of hundreds at a time. Hence the Times Magazine’s profile, by Susan Dominus, who follows him around Texas, analyzing his persistence in the face of one defeat after another. And therein lies the problem with her work. Viewed a certain way, it looks like a martyr, or even hero, story.

In a review, the Knight Science Journalism Tracker’s Paul Raeburn argued that the story was “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….

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.

Raeburn’s analysis sparked penetrating debate between a group of well respected science journalists, many of whom chimed in to applaud it. The Philadelphia Inquirer’s Tom Avril was among them, but he also demurred.

“I did not feel that it restored Wakefield’s reputation in any way,” he wrote. “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.”

Avril makes a strong case. The profile seemed fairly condemnatory to me, but easily might not to someone less familiar with Wakefield’s history. There’s no easy solution to this readership dilemma. There was certainly room for Dominus to be even more critical of Wakefield, but that doesn’t address whether she should have written the story at all. The Wall Street Journal’s Robert Lee Hotz took issue with Raeburn on that point:

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.

It’s a tough call. A similar debate about the coverage of iconoclasts erupted in April 2009 when the magazine profiled Freeman Dyson, who questions the science underlying manmade climate change. A reporter doing such a story should think carefully and honestly about the actual influence wielded by the subject of the profile. Two recent surveys found that about 93 percent of parents said their children either had or were going to get all of the recommended vaccinations. According to Dominus, Wakefield drew a crowd of about 250 when he spoke at Graceview Baptist Church in Tomball, Texas, one Saturday morning in January. That’s not a huge number, but of course many more still seek his guidance. Enough to justify the profile? It’s hard to say, because Dominus fails to deliver on the story’s central promise—a real sense of the reach of Wakefield’s lingering influence.

In that sense, some parts of MacNeil’s PBS report are actually more constructive than the Times’s profile. Autism is a growing problem in United States; it is estimated that between one in eight and one in 240—with an average of one in 110—children in the United States fall somewhere on the spectrum. More resources are needed to support children and adults, and MacNeil conveyed that effectively. It is a shame, though, that he doesn’t seem to understand where he went wrong, and that he has not responded more directly to criticism.

MacNeil was on The Emily Rooney Show, which airs on WGBH in Boston, on April 19 and was asked (around minute 10:00) about Mnookin’s charge that his the NewsHour series was “irresponsible.”

“Well, he’s entitled to his opinion and to sell his book,” MacNeil replied.

That may so, but that doesn’t make Mnookin wrong. MacNeil could have produced a worthwhile series about autism, but a lack of good journalistic judgment ended up marring the effort.

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Curtis Brainard writes on science and environment reporting. Follow him on Twitter @cbrainard. Tags: , , , ,