A blunder by Sunday Times journalist Brian Deer has left him exposed in the columns of British Medical Journal on-line, leaving open the question of how he could have legally obtained information on the background to cases in the disputed Lancet study including the identities of the patients and their families ( HERE ).
Deer had intervened in continuing correspondence following ‘the findings of fact’ in the General Medical Council case against Andrew Wakefield, John Walker-Smith and Simon Murch, and the Lancet’s decision to retract the 1998 paper. Misunderstanding a claim by distinguished US paediatrician and autism/vaccine campaigner, Ed Yazbak, that his grandson was one of the Royal Free cases, Deer wrote “I know the names and family backgrounds of all 12 of the children enrolled in the study, including the child enrolled from the United States. I don't believe that Dr Yazbak has a family relationship with any of them.”
In fact, Yazbak had never intended to imply that his grandson was one of the original 12, only that he had been a patient at the Royal Free and had been included in ongoing research into autism, gut disease and MMR at the hospital.
The issue of Deer’s access to confidential patient material had arisen before - both in relation to articles in the Sunday Times and to posts on his website - but there had never been opportunity to question him about it in a public forum before. Deer was immediately embarrassed by a mild mannered response from Yazbak, pointing out the misunderstanding, but asking how he came by such information, and a more caustic one by well-known New Zealand vaccine campaigner, Hilary Butler.
Yazbak rejoindered “ It almost seems that Mr. Deer is less upset about what I wrote than about the fact that some web site somewhere had picked it up. I certainly have no idea where my remarks were circulated and by whom and I have no control of that.
“In any case: If anyone else misunderstood my statement (s), I sincerely apologize for the confusion. No deceit was ever intended! I must say that I am troubled that Mr. Deer was able to obtain the names and family backgrounds of the 12 original study patients.
“I am also surprised that he finds it fair to censor my defense of Dr. Wakefield after he subjected him to public flagellation for so long. Maybe it is time for Mr. Deer to take a deep breath and relax. “
While Butler wrote “There are several UK medical studies relating to vaccines where I suspect that the authors are up to no good, so I would like unrestrained access to all key documents to see if I can confirm my suspicions, but can't quite work out how to do this.
“Could Brian Deer please let the BMJ know the means by which UK legislation allows free lance (or any other) journalists, to view original research files, and compare them with Royal Free (or any other hospital or private practice) medical files of children with full identities available, all test results available, without parental consent; the studies' authors consent; privacy restraints or hospital ethics committee approval?”
But worse was to come for Deer when the following day he was further challenged by senior British doctor, Prof John Dodge – who is Honorary Professor of Child Health at Swansea, Emeritus Professor of Child Health at Belfast, and has a remarkable string of letters after his name (CBE, MD, FRCP, FRCP(Edin), FRCPI, FRCPCH, DCH) “Like Hilary Butler, I was surprised that the journalist Brian Deer apparently holds names and addresses of autistic patients, as well as the details of their clinical histories.
“As the former director of a national disease registry, I am well aware of the difficulty bona fide medical researchers often encounter, and of the great lengths to which hospitals and Trusts go to ensure confidentiality, and where possible anonymity, for patients before they will release any information, for fear of violating the Data Protection Act.
“It is particularly surprising that a journalist for a lay newspaper under orders to find a big story (Mr Deer's own words) could persuade a respected teaching hospital to give him such data. Did the request go to the research ethics committee? Did he obtain written consent from the parents? Was he not given instructions to destroy all information which could possibly identify individuals as soon as he had extracted what he needed, in which case he should no longer hold names and addresses?
“Remembering the threat of litigation if journalists should try to reveal the immunisation status of the child of the then Prime Minister, I can only conclude that Mr Deer either covered his back and went through the correct procedures, or else that he assumed that the parents would have no appetite, or money, to take him, his newspaper or the hospital Trust to court for violating their privacy. I await his clarification with interest.
“Competing interests: Occasional frustration at inability to obtain information from medical records for epidemiological research”
It is also a remarkable aspect of this story that despite the ethically questionable nature of these activities Deer’s work continues to receive the support not only of the government and the National Health Service, but collaborators such as Prof Greenhalgh and Dr Evan Harris MP. Some of these bodies and personages ought to start considering their position in relation to this affair.
As to Deer, he remains silent...
John Stone is UK Contributing Editor for Age of Autism.