THE IRISH HEART Foundation is calling on the HSE not to destroy newborn screening card blood samples, saying they could save the lives of family members of 1,000 young victims of Sudden Cardiac Death.
Its Stop the Destruction campaign is urging members of the public to return the cards containing heel prick test samples taken from children between 1984 and 2002, as the cards represent a unique bio bank of genetic data from a generation of young people.
The IHF It believes that the blood samples contain invaluable genetic information that could be used to identify people at risk of Sudden Cardiac Death.
IHF medical director and consultant cardiologist, Dr Angie Brown said that unless the destruction of the cards is halted – at least until the public is properly informed – they could lose “the only chance left to obtain a genetic diagnosis for the extended family members of over 1,000 babies, children and young adults who were victims of Sudden Cardiac Death in the 18-year period up to 2002″.
This would mean that cardiac conditions that could be fatal without treatment would go undetected.
The decision to destroy the cards came after it emerged that samples taken before 1 July 2011 are being retained without consent and are in breach of national and EU data protection legislation.
A policy review carried out by a group including HSE and Department of Health experts recommended that samples more than 10 years old be destroyed unless their owners or guardians request their return. The HSE deadline for this request is March 31, Easter Sunday. After this, all other samples will be incinerated.
Sally Hegarty, whose 16 year old son Rory died in 2009 apparently due to SADS – sudden arrhythmic death syndrome, an inherited genetic condition which does not show up on post mortem – spoke of her fears for her other two children, Sadhbh and Neil.
I have been assured my children are low risk. But this is poor comfort to me – I don’t want any risk. The newborn screening card holds the only DNA I have of Rory and I hope in the future that through genetic testing, experts will be able to isolate the faulty gene and my children can be tested to prove they have not inherited this gene.
The IHF is urging the public to request that their bloodspot cards or those of their children, where possible, be returned to them. They can apply on www.newbornscreening.ie.
It is also asking for consideration to be given to legislation that would provide an ‘opt out’ system, where cards are preserved until destruction is requested. It says the cards could be used in those cases in which there is no other surviving blood or tissue sample to identify genetic abnormalities in the case of SADS.
Information on storing returned cards is available from the Irish Heart Foundation on their National Helpline Locall 1890 432 787, Mon to Fri, 10am to 5pm or by visiting www.irishheart.ie.
The HSE said that the cards are due to be destroyed to meet Data Protection regulations, and that it has invited a range of health organisations to submit details of how they would store the cards or use them for research.