Patients' Fury Over Blood Test Betrayal
Author: Laurence Vick

Michelmores' clinical negligence team report on disturbing
disclosures over blood samples taken from unsuspecting
haemophiliac patients.

Doctors at Royal Free Hospital in London carry out secret
variant CJD blood test analysis without permission.

The Observer online news service reports today on the reaction
of haemophiliac patients to the revelation that their blood
samples were taken for secret blood tests for new variant CJD
(the human form of "mad cow" disease) without their knowledge
and consent. The secret blood testing had been revealed in the
minutes of the meeting of the USA Food and Drug Administration
(FDA) in 2006 which had been attended by a leading member of
Britain's National Institute for Biological Standards Control.
The secret samples were referred to by the British scientist as
"a bit of serendipity" that could prove the "icing on the cake"
for testing the development of an effective blood test for the
disease.

The testing has been criticised by Professor Christine Lee,
until recently head of the Royal Free hospital's haemophilia
unit, who said that passing on blood samples without the
knowledge or consent of patients raised serious ethical issues
- particularly in the wake of controversies like the Alder Hey
organ retention scandal. "You can't go around just grabbing
stored samples", she said. Acknowledging that she had used
samples for hepatitis and HIV infection research "at an earlier
time" in her two decades at the Royal Free she said that
attitudes had now changed: "You can't go ahead and test people
without their knowledge. It's just not on". She said she had
been shocked when she had learnt of the disclosure of the blood
testing plan and has strongly urged both the Institute and her
Royal Free successor Professor Edward Tuddingham to drop the
initiative.

When contacted by The Observer Professor Tuddingham is quoted
as saying "yes, we are in the process of transferring them (the
blood samples) to the CJD surveillance group at the National
Institute for Biological Standards Control. We still have them
in the freezers here". He said the samples had been taken
during testing for hepatitis C and HIV but he said those
analyses were finished and the samples "were just going to be
incinerated otherwise". "I got in touch because it occurred to
me that the CHE people might be interested, and they were
indeed extremely interested. So I was pleased to find a useful
research end for the samples".

Patients are demanding that the blood testing be halted until
they have been consulted. Long-time haemophiliac patient at the
Royal Free Hospital, Mark Ward age 38 who contracted HIV from
blood sourced from the USA had not been informed until the
hospital had tested him for the virus without his knowledge. He
said "They're doing the same to us as they did 20 years ago".

Mark Ward said that if asked he might have agreed to the
release of his blood samples if it speeded up the development
of the test for vCJD but to do so without informing him was
"simply wrong ... we live in a world where we are supposed to
have rights but I feel I am being treated like a laboratory
rat".

Professor Christine Lee warned her successor at the Royal Free
that even a plan to "anonymise" the samples was fraught with
enormous patient counselling issues. She said that if
indications of vCJD were found in any of the samples the
question would arise of whether and how  to inform the
individual of the possible health risks to himself or others.
She said the Royal Free's plan "has to come above the parapet.
The patients have got to know about it - and give explicit
permission".

To date 160 people in Britain have contracted variant CJD,
including 4 transfusion patients who have either begun showing
signs of the disease or were found to have symptoms following a
post mortem. So far, no haemophiliac has developed the disease,
but the Observer reports that concerns centre on the fact that
two dozen batches of blood used for transfusion have included
samples given by people who did go on to contract the disease.

Laurence Vick and paralegal researcher Michael Vian Clark act
for a haemophiliac client in connection with litigation being
contemplated in the UK courts following the dismissal of claims
listed in the United States on a motion proposed by the
Defendants blood product manufacturers. The motion was accepted
on the grounds that proceedings in the UK will be more
appropriate for UK Claimants. This ruling has left the
haemophiliac litigants in limbo as lawyers consider solutions
to legal or procedural obstacles to litigation in England and
Wales.


About The Author: Laurence Vic is a Clinical Negligence
Solicitor and Partner at Michelmores Solicitors LLP
http:medneg.michelmores.com. For more information and articles
rabout medical claims, medical negligence and clinical
negligence by this author, visit. http://medneg.michelmores.com