When scientists hoard data, no one can tell what works

Peer review and replication are critical to the scientific method, but in medical trials, a combination of pharma company intransigence and scientists' fear of being pilloried for human error means that the raw data that we base life-or-death decisions upon is routinely withheld, meaning that the errors lurk undetected in the data for years -- and sometimes forever.

In an outstanding article for Buzzfeed, Ben "Bad Pharma" Goldacre tries to untangle the complex web of phenomena that results in trial-data secrecy, while conveying the urgency of independent auditing of that data.

Adversarial peer review is the process by which your friends point out your errors and your enemies call you an idiot for making them. It's bruising -- and it's become so uncommon that the press reports on human error in studies as though it was a scandal, rather than the routine phenomenon it really is. This creates a vicious cycle: researchers are fearful of publishing their data, making the detection of errors into a rarity. This rareness makes those errors into scandals. The scandals make researchers reluctant to publish.

The best way to assess the evidence of statins is to combine the raw data from all trials. This week the British Medical Journal published an editorial explaining that they have requested the original patient data from 32 major statins trials to do just that. Despite follow-up calls and emails, only seven teams have deigned to respond.

Conducting a trial, and then refusing to let anyone see the data, is like claiming you’ve flown a spaceship to Pluto, but refusing to let anyone see the photos.

That would be laughable. But the justifications for secrecy from drug companies and researchers are hardly any more plausible. Sometimes, they play on fear and authority. What about the idiots, they say? The anti-vaccination conspiracy theorists, and the journalists who love them: Won’t they use this information to create mischief, by picking endless holes in perfectly good data?

Well, this week, NASA flew a spaceship past Pluto, and the truthers appeared right on cue to say it was all a fake. Idiots gave them coverage. And then…the sky did not fall in. NASA was not defunded. The claims were debunked, by bloggers who enjoyed the sport. And everyone tweeted that clip of astronaut Buzz Aldrin punching a conspiracy theorist in the face.

Scientists Are Hoarding Data And It’s Ruining Medical Research [Ben Goldacre/Buzzfeed]

(via Dan Hon)

(Image: Drupal Modules as of 11/9/07, Kent Bye, CC-BY)

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