Some doctors are doing tests for new variant CJD on blood samples of haemophiliac patients without the knowledge or permission of the patients.

Patients' fury over blood test 'betrayal' - Observer

Extract:

"Doctors were accused of gross betrayal last night after haemophiliac patients discovered that their blood samples were being tested for the human form of 'mad cow' disease without their knowledge.

They compared the move by one of Britain's leading NHS hospitals to the Alder Hey organ scandal, when samples were taken from the bodies of dead children without their parents' permission.

The secret blood testing for new variant CJD was discovered in the minutes of a meeting of America's Food and Drug Administration, which was attended last year by a leading member of Britain's National Institute for Biological Standards Control.

The minutes revealed that the British scientist told the FDA that haemophiliac blood samples taken from the Royal Free Hospital in London would be 'provided for variant CJD analysis'. He described the samples as 'a bit of serendipity' that could provide 'icing on the cake' for testing the development of an effective blood test for the disease.

Last night testing was criticised by Professor Christine Lee, until recently the head of the Royal Free's haemophilia unit, who said that passing on blood samples without patients' knowledge or consent raised serious ethical issues - particularly in the wake of controversies like the Alder Hey organ scandal.

'You can't go around just grabbing stored samples,' she said."


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