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Some might be interested in following the rapid responses to this article in the BMJ

21 replies

saintlyjimjams · 17/11/2011 22:37

Hmm

(Not going to debate it - been there done that - but MMR aside the editor the BMJ saying (about publishing patient records):

"The second point is that, even if we had concluded that we were obliged to obtain consent, we reasonably anticipated that we would have been unable to obtain it. The BMJ is not and never has been in contact with the patients or their families to the extent that, apart from one parent who has written to us, we don't know their identities. Furthermore, given (a) the fact that most of the families of the patients in question are known to be dedicated supporters of Andrew Wakefield and opponents of Brian Deer and his work and (b) the tenor of the articles that we were proposing to publish alongside David Lewis?s letter, we reasonably believed that even if we could establish contact with the patients or their families, we would not obtain consent."

WTF??? Undergraduate students have to follow better ethical procedures than that. Is she REALLY saying, even if we had known who to contact for consent we wouldn't have tried because we know consent wouldn't have been given by the families concerned. WTF? Um, little bit dodgy, much? I'd be pretty bloody irritated if my son's medical results were published without my consent.

Worth reading the response of the person involved in filling in the patient records/grading sheets as well. He says: "Feature ?Pathology reports solve ?new bowel disease? riddle? (BMJ 2011;343:bmj.d6823), accompanying articles and editorial it is evident that there are a number of misunderstandings. Many of these are a result of a lack of understanding of the essential difference between the systematic documentation of specific microscopical features in a grading sheet by a ?blinded? (ie in the absence of any clinical, or other information) pathologist on the one hand; and on the other hand concluding an overall clinicopathological diagnosis by integration of clinical information with diverse lines of investigation (including information in the grading sheet). The difference between the two activities should be understood better." Hmm

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saintlyjimjams · 17/11/2011 22:38

Oh ffs forgot the sodding article!

www.bmj.com/content/343/bmj.d6823?tab=responses

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silverfrog · 18/11/2011 08:05

had read the second bit, and thought that was bad enough (from BMJ pov)

but the first? would be ridiculously shocking of this wasn't Godlee we were talking about. NOt exactly famed for logical (and indeed, er legal) positions, is she?

silverfrog · 18/11/2011 08:08

but yes, disgusting.

and to try to hide behind the 'but we didn't know who they are anyway', when the real shocker is in the 'but even if we did, we wouldn't have asked because they would have said no'

that makes it all ok, then, doesn't it? BPS Code of Ethics reduced to 'well I knew I wouldn't get permission, so I thought I wouldn't ask - surely that makes it ok?'

CatherinaJTV · 18/11/2011 08:27

I must admit, I was surprised and not impressed with that...

saintlyjimjams · 18/11/2011 08:45

Not good is it Catherina - I think this is the thing for me. Whether Wakefield is right, half right or completely wrong (and my personal view is that in a very small number of cases he is at least half right, but mmr is irrelevant for the majority of autism cases) the - I don't know - establishment for want of a better word have behaved so badly in their rush to destroy him that it's destroyed any credibility they have.

If you delve there are certainly suggestions of other dodgy practices - and many of them - but this is in your face straight from the horse's mouth so to speak. As silverfrog says to actually say 'had we been able to ask they would have said no so there was no point asking' is shocking beyond belief. if you know you would have been refused permission then surely that is a reason NOT to publish. I mean the whole thing of assumed consent unless you opt out was stopped years ago - or at least recognised as being undesirable. But this is one stage further. Assumed non-consent so we'll avoid asking. Murky indeed.

Now THIS I woukd like to see on a GCSE syllabus Grin

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silverfrog · 18/11/2011 12:42

arf at GCSE syllabus - more chance of finding that 'cure' for autism Hmm

I've just finished an assignment on ethics this week - wish I'd had a bit longer - would have loved to have worked this one in somewhere!

saintlyjimjams · 18/11/2011 12:48

Perhaps Ben Goldacre will write a column on it?

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silverfrog · 18/11/2011 12:51
CatherinaJTV · 18/11/2011 20:46

saintly - why don't you tweet him and ask him to do that?
Wait - I will!

saintlyjimjams · 18/11/2011 21:10

Please do Catherina - he's a bit scathing of mothers of autistic children having an opinion that differs from his own Grin. Although to give him his due he did comment on the some of the shocking media coverage of the case.

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saintlyjimjams · 18/11/2011 21:10

The Wakefield case I mean, not this....

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ArthurPewty · 20/11/2011 10:59

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ArthurPewty · 20/11/2011 11:01

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saintlyjimjams · 20/11/2011 14:06

What Leonie??? Shock although I suppose that might explain why these sorts of issues tend to only be known about by those really looking. It's why this story shocked me though. What Godlee has said in print, public ally, is, IMO, shocking but she doesn't appear to see anything unethical in the actions of the research team.

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ArthurPewty · 20/11/2011 15:23

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ArthurPewty · 20/11/2011 15:26

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saintlyjimjams · 20/11/2011 16:05

Goodness. :zips mouth:

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ArthurPewty · 20/11/2011 16:14

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saintlyjimjams · 20/11/2011 19:41

I suppose they've been there done that with libel. This can't be though as Godlee has said in print that she thinks it's okay to publish medical records even when she strongly suspects consent if sought would not have been given.

Is suppose it's up to each individual to decide whether that's ethical or not.

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ArthurPewty · 20/11/2011 19:49

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Beachcomber · 17/01/2012 16:55

Hah - there seem to be plenty of people who don't have an issue with it. Certainly it came up on the Goldacre thread and nobody seemed to give a shit.

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