Hi Nick,
A huge welcome to forum, and thanks for posting your thoughts.
Thanks for your sensitive blog. It's great to have more people take an interest in the issue.
Like
@Marco, I was uncomfortable reading about the issue of death threats etc., because they are a distraction, but the accusations have been flying around Twitter over the past couple of days, so I understand why you felt they needed to be addressed, and I think you made a great job of rebutting the arguments that have been made on Twitter. (i.e. the argument that the data shouldn't be released because of the 'ever-so-dangerous' patients.)
Like Simon, I especially appreciated your point about Muslims being harassed on a plane. The point being that a whole population should not be held in contempt and discriminated against because of the alleged behaviour of one or two isolated and unrepresentative individuals.
It seems to be basic common sense that patients should have access to (in this case, publicly-funded) data that informs and decides the nature of their health care and national health care policies.
It's a bit like a government withholding data on the basis some citizens behave badly. Or a school withholding exam data because some pupils were unruly. Or a public library refusing to issue books because a customer dropped some litter.
I genuinely don't believe that the PACE scientists are acting in any way with malicious intent. They are not, to use a familiar image, sitting in a swivel chair, stroking an overweight white Persian cat.
They thought they were doing science, and now they also have to cope with the socio-political fallout. Most of them didn't sign up for this.
Oh, we look back to our innocent pasts when we assumed exactly the same. I think that was the starting point for all of us. We've had some very hard lessons.
But perhaps there is always a fine line where bureaucracy and group-think combined with personal ambition and self-preservation can become so damaging to others that it unintentionally becomes systematic abuse. It's a bit of a philosophical discussion.