Your (Canadian) tax dollars at work

December 31, 2017

(This article was originally published at Statistical Modeling, Causal Inference, and Social Science, and syndicated at StatsBlogs.)

Retraction Watch links to this amazing (in a bad way) article by “The International Consortium of Investigators for Fairness in Trial Data Sharing” who propose that “study investigators be allowed exclusive use of the data for a minimum of 2 years after publication of the primary trial results and an additional 6 months for every year it took to complete the trial, with a maximum of 5 years before trial data are made available to those who were not involved in the trial.”

It’s not just that. They also want us to pay:

Persons who were not involved in an investigator-initiated trial but want access to the data should financially compensate the original investigators for their efforts and investments in the trial and the costs of making the data available.

Ummm, we already did pay for this—it’s called “taxes”!

To the credit of the New England Journal of Medicine, they allowed open comments, which were universally, 100%, negative.

From one comment:

“A key motivation for investigators to conduct RCTs is the ability to publish not only the primary trial report, but also major secondary articles based on the trial data.” This is used as a justification for a lengthy delay in data release. THE primary motivation MUST BE to improve patient health. As long as medical investigators continue to prioritize publication rights over what is best for the patients, progress will be slowed.


From another comment:

Researchers should get credit whenever secondary analyses are performed. Having more sets of eyes on the data could mean more discoveries are made. The incentive created by getting more articles published from their data and having enabled more discoveries should be plenty of motivation for researchers under the current publish-or-perish system.

Yup again.

From another comment:

“We believe 6 months is insufficient for performing the extensive analyses needed to adequately comprehend the data and publish even a few articles.”

Are the authors proposing that dying patients should wait a few years such that medical researchers can climb the career ladder?

Yup yup yup.

Take-home message

What’s scary is not that some researchers have these views but that they were considered so normal that New England Journal of Medicine published them without editorial comment.

And with that we close out our blogging for 2017. Let’s hope for more data sharing in the forthcoming year!

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