RONAN McGREEVY
The Royal College of Physicians of Ireland (RCPI) has said that the Guthrie cards, which were given a last minute reprieve last week, should be treated the same as museum pieces and not destroyed.
The Minister for Health, James Reilly’s, decision to order that the heel prick cards not be destroyed has been broadly welcomed by those who said that it amounts to a potentially invaluable biomedical archive.
Mr Reilly has set up an expert group to look at how the cards can be archived and how they are saved in other countries.
It had originally been decided to destroy the cards on a phased basis because their retention did not comply with data-protection legislation.
They are taken from newborn infants to test for a number of diseases.
The RCPI has been to the forefront in advocating the retention of the cards, arguing that it amounts to a unique genetic record of the Irish population since 1984 and at a time when advances in genetics make it an even more valuable resource.
RCPI President Prof John Crowe said it had been an "excellent decision" on the part of the Minister to ensure that the decision to destroy them be reviewed.
He advocated that the expert group should look at retaining the cards, not only from a legal perspective, but also a societal and medical one.
He urged the group should look at Denmark where legislation is in place to keep the cards for 1,000 years if necessary.
He also said Norway was a good example where the Guthrie cards had the same status as museum pieces and could not be destroyed.
“I’d like to see a safe archive in a safe way they are preserved so they last, that there be a proper independent governance structure for access to them. An ethics committee would determine how the cards were used.”
Prof Crowe said there was now an “explosion of molecular genetics every day that is being added to” and the cards could prove to be even more valuable in the future.
The Irish Heart Foundation, which started a campaign to save the cards, said the Minister deserved "full credit for the decision" not to destroy the cards.
IHF chief executive Barry Dempsey maintained that the 1,400 families which had lost a member through sudden adult death syndrome would now be able to get a genetic diagnosis to see if they are at risk.
“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 for an underlying genetic condition. Thanks to the Minister, this hope lives on,” he said.
