Parents' Fury Over 'Betrayal' of Autistic Boy

      [By Lorraine Fraser.]
http://www.telegraph.co.uk/
      The parents of an autistic boy who are suing the makers of the
combined Measles, Mumps, Rubella (MMR) vaccine are to make a formal
complaint to the General Medical Council after their son's confidential
medical notes were secretly examined by an outspoken supporter of the
vaccine.
      Martin and Ann Hewitt from north London are furious that their
seven-year-old-son Thomas's medical notes have been used in a study by
Professor Brent Taylor, who describes the idea that the vaccine may cause
severe bowel problems and autism as "crackpot".
      They are demanding that the Royal Free Hospital in north London
explains why the notes, which contain confidential information on the boy
and several members of his family and are crucial to their legal case, were
used by the doctor without their consent. The incident raises new concerns
about NHS researchers accessing information on patients without permission.
      Thomas is one of 170 children who, as revealed by The Telegraph, have
been diagnosed with a new combination of bowel disease and autism by Dr
Andrew Wakefield and his colleagues at the department of paediatric
gastro-enterology at the Royal Free Hospital, where Professor Taylor also
works as head of the Department of Child Health. The child is also one of
250 who are currently suing the makers of MMR.
      Last night Mrs Hewitt said: "I am absolutely furious; I am staggered.
This is a very, very serious breach of confidence. Thomas's notes were not
available as far as we were concerned to Brent Taylor. Does this mean than
anyone's notes or any child's notes can be used by any doctor just because
they work in the NHS? They owe us an explanation and we will be demanding an
assurance that Brent Taylor is not associated with any company that makes
MMR vaccine and is not acting for the defendants in our case."
      The Hewitts first became aware last November that Thomas's medical
notes may have been used by someone other than Dr Wakefield and his
colleagues. They wrote immediately to the hospital's ethical practice
committee expressing their "concern and distress" as their consent had never
been sought.
      Mrs Hewitt said: "I felt it a gross intrusion on our personal privacy.
Also we wanted to be sure his file would be available if Thomas needed
emergency treatment."
      Last week the Royal Free Hampstead NHS Trust disclosed that Thomas's
notes had been used by Professor Taylor in a study "designed and funded by
the Department of Health". The notes had been on the trust's premises and in
his possession "at all times". Confidentiality had not been breached, the
trust insisted, as "patient data can be used for research purposes as long
is they are anonymised, which they were in this case". But Professor Taylor
denied that Thomas's notes were anonymised. He said: "Patently, the notes
cannot be anonymised."
      The GMC has recently expressed serious concern about the ethics of
using medical notes acquired in the care of a patient for research purposes.
Guidelines to doctors issued last September say researchers should obtain
patients' "express consent" to the use of identifiable data. In the case of
a child this would mean asking parents' permission.
      The GMC says that where neither is "practicable", information may be
disclosed 'in the public interest" - but doctors are warned they may have to
justify this to the courts and the GMC. A spokesman said: "If any
information that is personal to the patient is disclosed to anyone outside
the patient's health care team - that is anyone who is providing care for
the patient directly - the patient has to have the opportunity to be aware
of that and to refuse consent."
      Although they both work at the Royal Free Hospital, Professor Taylor
and Dr Wakefield are on opposing sides over MMR safety. Professor Taylor
published a study two years ago which he said showed no evidence to link
increasing climbing rates of autism with the introduction of MMR in 1988.
His study has been quoted repeatedly by the Department of Health as evidence
that the vaccine is safe.

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