Santa, if you’re reading this: James Coyne has a simple request for Christmas.
Coyne, professor of health psychology at University Medical Center Groningen, in the Netherlands, would like to see the data from a controversial study about chronic fatigue syndrome that appeared in a 2012 issue of the journal PLOS ONE. King’s College London is refusing, calling his request “vexatious” and an attempt to embarrass its faculty.
To be clear, Coyne’s not asking for sex tapes or pictures of lab workers taking bong hits. He’s asking for raw data so that he can evaluate whether what a group of scientists reported in print is in fact what those data show. It’s called replication, and as Richard Smith, former editor of The BMJ (and a member of our board of directors), put it last week, the refusal goes “against basic scientific principles.” But, unfortunately, stubborn researchers and institutions have used legal roadblocks before to prevent scrutiny of science.
The article, part of what’s known as the PACE trial, was written by King’s researchers along with colleagues from the University of Oxford and Queen Mary University of London. It reported that two particular treatments — known as cognitive behavioral therapy and graded exercise therapy — were effective. But many researchers question those conclusions, as David Tuller of the University of California, Berkeley, has reported.
Coyne petitioned King’s, which with Queen Mary co-owns rights to the data, for access to the material. After what it calls “careful consideration,” the college decided his request fell under the UK’s Freedom of Information Act (FOIA), and turned him down. “The university considers that there is a lack of value or serious purpose to your request,” Ben Daley, the institution’s information compliance manager, wrote in a Dec. 11 letter to Coyne. “The university also considers that there is improper motive behind the request. The university considers that this request has caused and could further cause harassment and distress to staff.”
The seemingly bureaucratic decision to classify this as a FOIA request was a key move, because the UK’s act has what’s known as a “vexatious” provision that allows institutions to exempt materials when they determine that requests are, well, vexatious.
The university attempts a reasonable tone here — but it’s dead wrong. If the information Coyne is seeking is harmful and distressing to the staff of the university — and that’s the university’s claim, not ours — that’s only because the information is in fact harmful and distressing. In other words, revealing that you have nothing to hide is much less embarrassing than revealing that you’re hiding something.
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And as PLOS ONE noted, its data policy requires that authors “make freely available any materials and information described in their publication that may be reasonably requested by others for the purpose of academic, non-commercial research.” Other than that last commercial exception, institutional imperatives and motivations here are, frankly, irrelevant.
We’ve seen FOIA requests decried as vexatious on this side of the pond, too. In February, the Union of Concerned Scientists issued a report in which it said some such requests could be “bullying” and “harassment.” The UCS position — which became a flashpoint in the messy retraction of a blog post — attempts to draw the harassment/justifiable line where requests interfere with researchers’ ability to perform their jobs and freely pursue whatever inquiry they choose. But it’s never really been very clear to us where that line lies. Instead, the now-retracted blog post said it seems like a “campaign to blunt the tools with which the public can investigate claims of scientific malfeasance.”
All of this is a troubling development for science, a field that wants the public to believe that transparency is one of its guiding principles. We’d like to believe that, too, but when researchers refuse to share data, and how they came up with it, they lose the right to call what they do science. The ability of other researchers — including competitors — to try to poke holes in an analysis is a bedrock of the scientific method.
Last week, King’s added another rationale for its refusal: patient confidentiality. In a Dec. 18 press release, noting that it had released data to some independent scientists, it wrote: “The scientists who have already received data have all signed a formal confidentiality agreement, approved by the independent PACE Trial Steering Committee, which required that they respect the confidential nature of the data, and keep them secure, as agreed with trial participants when they consented to take part.”
Now, patient confidentiality is critical, and must be upheld. PLOS ONE’s notice on the paper mentioned its importance, too. But if that’s really the crux of the matter, why not just ask Coyne to sign whatever agreement others have signed? (It hasn’t.) As others have pointed out, patients in the trial are among those asking King’s to release the data to Coyne, so it’s a bit puzzling why this is now a concern.
Unless, of course, Uncle Scrooge has some skeletons hiding in the closet.