[check http://www.bmj.com/cgi/eletters/340/feb02_4/c644#233328 someone threatened the BMJ. They took Professor Dodge's letter out and John Stone's and Hilary's and Bill Welsh. They removed one sentence from Yazbak's........... this part "He should relax and take a deep breath". [pdf] Purged thread BMJ rapid responses re: Brian Deer............edited and censored........]
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.
I gather the assessed value is for tax purposes and the price of $460,000 not anomalous for the district.
Yes, and it is indeed curious that Deer’s website has apparently been registered at 777 Vedado Way, NE Atlanta 30308, in the neighbourhood of the Centers for Disease Control since 1 June 2000 (http://whois.domaintools.com/frwikipedia/briandeer.com , http://www.aboutus.org/BrianDeer.com ). It has remained there despite the property changing hands according to web records on 21 June 2004 for $460,000, which is approximately 3 times its market value (http://www.realtor.com/property-detail/777-Vedado-Way-NE_Atlanta_GA_30308_e5e74403?source=web ).
Doing a bit more digging into Brian Deer's internet registry of his webpage, it appears that he has a bogus phone number posted (212-212-2121), so the Vedado Way address is probably bull****, too. Maybe he was visiting the CDC and copied down a random address from the neighborhood and used it on his registry.
It might interest you to know that this posting of incorrect information is in violation of the law: http://www.icann.org/en/announcements/advisory-10may02.htm
In fact, ICANN does "Require registrants to agree that wilfully submitting inaccurate contact details (or failing to respond within 15 days to an inquiry regarding accuracy) shall be a basis for cancellation of the registration"
Maybe it's time for some intrepid reporter to contact ICANN and get that information corrected ;-)
http://wdprs.internic.net/