The Minister for Health has ordered the HSE not to destroy up to 1.5 million newborn screening card blood samples, also known as Guthrie cards.

The move has been welcomed by the Irish Heart Foundation (IHF), which recently launched a campaign to stop the destruction of the cards.

Since the 1960s, every child in Ireland has had a heel prick test done after their birth. This test provides a blood sample, which is used to test for six conditions, and a blood sample is also stored on a small card.

Cards relating to births between 1984 and 2002 were set to be destroyed unless the person or their next of kin requested otherwise by March 31. The HSE originally made the decision to destroy the cards after it emerged that samples taken during this period were being retained without consent - this is in breach of national and EU data protection legislation.

However, the IHF had insisted that the information contained in these cards could save the lives of the family members of over 1,000 young victims of sudden cardiac death (SCD).

According to consultant cardiologist in the Mater Hospital, Dr Joe Galvin, identifying the underlining gene mutation is critical to making an diagnosis, particularly in the deceased. However, there are usually no blood or tissue samples left from the deceased.

"A study from New Zealand published in 2010 showed that a diagnosis could be made in up to one-third of SADS (sudden adult death syndrome) cases by examining the Guthrie cards of the deceased, which were in some cases up to 30 years old.

"The (Irish) cards therefore can now be used in those cases in which there is no other surviving blood or tissue sample to identify the culprit genetic abnormality. This in turn could be used to identify at risk surviving family members and protect them with lifestyle changes, medications or in high risk cases, an implantable defibrillator," Dr Galvin explained.

Research carried out on behalf of the IHF indicated that only around one in 10 people were aware of the planned destruction of this ‘invaluable genetic information'.

However, Health Minister, Dr James Reilly has now informed the HSE that no such destruction should take place until an expert group meets on the issue to discuss how these cards can be maintained without breaking data protection regulations.

Responding to the news, IHF chief executive Barry Dempsey, extended his ‘deepest appreciation' to Minister Reilly.

"The latest announcement means the estimated 1,400 families affected will not lose their last chance of a genetic diagnosis in the future, nor will the last remaining DNA of their child be destroyed," he commented.