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Commons Committee criticises lack of transparency in clinical trials

Shell

Senior Member
Messages
477
Location
England
Just came across this report in Pharma Times It seems that "data transparency was a primary concern of the inquiry".
I have doubts (big ones) about the efficacy of Govt in ensuring good scientific ethics and protocols, but for publically funded trials, yes, they need to be fully reported and published.
It's pretty bad when people have to put in FOIs to get data that should automatically be published.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
They gave qualified support to making raw data available:
Commons committee said:
  • Individual patient-level data (IPD). The Committee does not support placing IPD in the public domain “in an unrestricted manner”, even if they are anonymised. The risk to patient confidentiality “is too great”, it believes.
Instead, “specific individuals should be provided with controlled access to IPD through carefully managed and secure ‘safe havens’”, the report suggests. Access to these data should be facilitated by an independent ‘gatekeeper’, tasked with ensuring that data are handled “responsibly and in a way that makes a useful contribution to scientific knowledge”.
Which is fine, so long as the gatekeeper is genuinely independent and isn't there to prevent uncomfortable findings from emerging. Very often re-analysis will produce findings that challenge the original author's interpretation - and is some ways that is the most valuable thing about making data availalble: scrutiny.