A major campaign to stop the destruction of newborn screening card blood samples has been launched by the Irish Heart Foundation (IHF).

According to the foundation, 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).

Around 80 children and young adults die every year from SCD. In many cases, no definite cause of death can be found even after an autopsy and the death may be the first sign that the young person had any kind of heart problem.

The campaign centres on the HSE's decision to destroy up to 1.5 million newborn screening card blood samples, also known as Guthrie cards, in order to comply with EU data protection laws.

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 are now set to be destroyed unless the person or their next of kin requests otherwise. Requests must be made before March 31.

Research carried out on behalf of the IHF found that just 12% of the Irish population is aware of this planned destruction, despite the fact that these cards contain ‘invaluable genetic information to identify people at risk of SCD'.

According to IHF medical director and consultant cardiologist, Dr Angie Brown, this destruction should be stopped, or at least postponed, until the public is properly informed about this issue. Otherwise the country will have lost the only chance left to obtain a genetic diagnosis for the family members of SCD victims during the 18-year period.

"This is a major issue of national concern and we only have a very short window of opportunity to act. These cards represent a unique bio bank of vital genetic data covering a generation of young people. Destroying them could cost lives. We cannot allow a situation where data protection takes precedence over human life," Dr Brown said.

The HSE 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.

According to IHF chief executive, Barry Dempsey, there is an onus on the State to at least ensure that the public is properly informed about this plan. However, with just weeks to go, this does not appear to be happening, prompting this campaign.

"This extraordinary inaction in the face of what is potentially a life or death issue for thousands of people countrywide has to be challenged. Destruction of the cards presents a very real danger to a large group of people. The HSE must meet its duty of care to do what it can to protect them," he insisted.

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 cases by examining the Guthrie cards of the deceased, which were in some cases up to 30 years old.

"The 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.

The IHF is appealing to people and/or their families to request the return of their Guthrie cards, particularly if someone has died of SCD.

Anyone wishing to do this should click on the HSE site www.newbornscreening.ie for further details.

More information on the IHF Stop The Destruction Now campaign can also be viewed here