Heel prick tests are saved at last minute
Experts praise Dr Reilly for ordering legal review
JAMES Reilly has ordered a last-minute review that will stall t he planned destruction of more than a million blood samples taken from newborns.
Medical experts last night expressed their relief after the Health Minister demanded a review to find a legal loophole that will save decades’ worth of ‘invaluable’ data.
The Irish Heart Foundation said it believes the cards could contain life - s aving i nformation f or families affected by Sudden Adult Death Syndrome.
And the medical community in general – including the Royal College of Physicians of Ireland – believe the cards are ‘genetic gold dust’ that could contain information on a host of illnesses.
The heel prick test samples, stored on Guthrie cards, are routinely taken from babies after birth to test for a number of genetic conditions, including cystic fibrosis. But Data Protection Commissioner Billy Hawkes had ordered the destruction of cards from between 1984 and 2002 because permission was never obtained to store them.
Owners of the cards had been given until this Sunday to reclaim them from the HSE, after which the remaining cards would face destruction.
But following extensive lobbying, Dr Reilly has ordered a team of experts to find a method of saving the cards. In the interim, he has asked the HSE not to destroy the cards.
IHF chief Barry Dempsey said: ‘On behalf of the Irish Heart Foundation and the families we represented on this issue who have lost children to Sudden Cardiac Death, I extend our deepest appreciation to Dr James Reilly.
‘ The latest announcement means the estimated 1,400 families affected will not lose their last chance of a genetic diagnosis nor
‘The archive is invaluable’
will the last remaining DNA of their child be destroyed.
‘A genetic diagnosis using these heel prick test cards can potentially isolate a faulty gene that allows their remaining children and extended family to be tested f or an underlying genetic condition. Thanks to the minister, this hope lives on.’
Molecular Medicine Ireland also welcomed the minister’s decision. A spokesman said the archive has ‘ major potential f or medical diagnosis, therapeutics and research.’
Dr Peter Doran of the MMI said: ‘This is a good move by the minister. The archive is invaluable from a medical perspective and the issue will benefit from a broader, expert consideration.’
Mr Hawkes’ recommendation to destroy the cards was backed up by a review ordered by Dr Reilly, published in January.
A spokesman for Mr Hawkes said last night he had ‘noted’ the minister’s latest comments but was making no further comment.
A Department of Health spokesman said Dr Reilly ‘absolutely respects’ Mr Hawkes’s position.
Dr Reilly said he made the decision out of a ‘real, deep sense of unease about destroying what is clearly a very valuable biobank, the true value of which many not be known to us at this moment in time for either the common good or indeed the individual.’
The Royal College of Physicians of Ireland welcomed the lastminute decision, describing the cards as an irreplaceable national asset of considerable medical and societal value.