Study about potential effects of new autism definition spotlights the Ingelfinger Rule
Reactions to a New York Times story from last week about a new definition of autism that could limit the number of people diagnosed with the condition — and therefore eligible for support and services — have turned into a good case study in how the Ingelfinger Rule works.
For the uninitiated, here’s how veteran medical trade reporter Bob Finn describes the rule:
Franz J. Ingelfinger, M.D., (1910-1980) was editor of the prestigious New England Journal of Medicine (NEJM) from 1967-1977. During his tenure he decreed that for an article to be published in his journal it must not previously have appeared elsewhere. The rule prohibited authors from releasing their results to the news media before the date they were published in the journal. A small number of other journals (such as JAMA) developed similar policies, and the net result is that scientists are often afraid to talk to reporters for fear that they’ll lose the opportunity to publish in JAMA or NEJM (or Nature or Cell or Science).
The new study, by Yale’s Fred Volkmar and colleagues, took a look at the likely effects of the new Diagnostic and Statistical Manual of Mental Disorders (DSM) criteria for autism. The fifth edition of the DSM is scheduled to be published in 2013, and has already been plagued by controversy. As the Times reports:
The new analysis, presented Thursday at a meeting of the Icelandic Medical Association, opens a debate about just how many people the proposed diagnosis would affect.
The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”
A DSM committee member told the Daily Beast that the Icelandic medical conference was a “notably random forum in which to present such findings:”
“We’re really just hearing about this today,” says Cathy Lord, the director of the new Institute for Brain Development and a member of the DSM committee working on the diagnostic changes (Volkmar at one point was a member of the committee, but resigned). “It was not sent to the committee, it was not brought up to the committee, and it’s embargoed, so technically they’re not even supposed to be talking about it. You’re supposed to not even release the information until it comes out in the journal.”
But that’s not actually how journals typically interpret the Ingelfinger Rule, as Embargo Watch readers may recall. Scientists are free to present findings at scientific conferences, and even talk to reporters, as long as they don’t court that attention. And that seems to be what happened here, according to what Volkmar told Embargo Watch:
I presented the preliminary results – on a subgroup – back in October at [the American Academy of Child and Adolescent Psychiatry] – to much discussion in the large group but zero press attention. One of our problems was that the DSM V approach kept changing so we had to redo and then redid for the entire group – it is the latter that has been accepted.
It seems unlikely the paper, scheduled to published in the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP), will fall victim to the Ingelfinger Rule and now be rejected:
I checked with the editor before Iceland — where of all things the New York Times picked it up! — and presented only what we had previously presented at AACAP – one single slide – go figure. We won’t be talking about the entire sample until the paper comes out.
What this does highlight, of course, is that Ingelfinger can prevent a full discussion of findings, even if peer review is done and dusted. It’s unclear when the whole paper will be published so that such a discussion can happen. I’ve contacted the editor of the JAACAP and will update with anything I learn.