Data too important to share: do those who control the data control the message? by Peter Doshi (BMJ 2016;352:i1027).
Read Peter’s post for the details but the problem in a nutshell:
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“The main concern we had was that Fresenius was involved in the process,” Myburgh explained. He said there was never any question of Krumholz’s independence or credentials. Rather, it was a “concern that this was a way for Fresenius to get the data once they were in the public domain. We want restrictions on who could do the analyses.”Under the YODA model Krumholz proposed, the data would be reanalysed by independent parties before being made more broadly available.
“We have no issue with the concept of data sharing,” Myburgh said. “The concerns we have come down to the people with ulterior motives which contradict or do not adhere to the scientific principles we adhere to. That’s the danger.”
Myburgh described himself as an impartial scientist, in contrast to those who have challenged his study. “I’ve heard some of the protagonists of starch. Senior figures wanted to make a point. We do research to answer a question. They do analyses to prove a point.” (emphasis added)
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You can hear the echoes of Myburgh’s position of:
We want restrictions on who could do the analyses.
in every government claim for not releasing data that supports government conclusions.
If “terrorists” really are the danger the government claims, don’t you think releasing the data on which that claim is based would convince everyone? Or nearly everyone?
Ah, but some of us might not think opposing corrupt, puppet governments in the Middle East is the same thing as “terrorism.”
And still others of us might not think opposing an oppressive theocracy is the same as “terrorism.”
Yes, more data could lead to more informed discussion, but it could also lead to inconvenient questions.
If Myburgh and colleagues were to find this is the last funded study from any source, unless and until they release this and other trial data, they would sing a different tune.
Anyone with a list of the funders for Myburgh and his colleagues?
Email addresses would be a good start.