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PARENTS OF VICTIMS of sudden cardiac death have been urged to request the return of their child’s newborn screening card before it is destroyed at the end of this week.
The Irish Heart Foundation has said the heel prick tests contain “precious blood samples” that could be genetically tested to identify underlying heart conditions.
The HSE has implemented a deadline of 31 March for requests for the return of the Guthrie cards. Due to Data Protection concerns, all cards held for 10 years or more (without consent) are earmarked for destruction.
The charity has launched an urgent national appeal to alert families affected by SCD to the Easter Sunday cut-off. They say families could lose “the only chance left to them to achieve a genetic diagnosis”.
“Such a genetic diagnosis would allow extended family members to be tested and potentially save more lives by affording them the opportunity to take steps to reduce their risk of sudden cardiac death,” the IHF said in a statement.
Chief executive Barry Dempsey added, “Our Helpline nurses have received calls from families all over the country on this issue, many of whom carry around the daily fear of something happening to their remaining children. The only hope for these parents is that these small heel prick test cards can be used to isolate a faulty gene that allows their children and extended family to be tested for an underlying condition. Only then will these families know their loved ones are safe and their family is protected from another sudden loss.”
About 80 young Irish people die each year because of SCD.
Those who want their child’s newborn screening cards returned can visit the HSE website, www.newbornscreening.ie for further details. The campaign has more details on www.stopthedestructionnow.com and on Twitter through the hashtag #stopthedestructionnow.
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This data could have legal or medical importance. Why don’t they just put the data onto a new medium and store it?
They don’t have legal rigth to as the information as gathered for one reason only.
Minister O’Reilly has announced a U-turn on decision to destroy cards.
Why can’t we just separate identifiable information from each sample, thus upholding data protection and preserving an invaluable genetic resource?
Is there a website u can request to keep ur child’s details
Yes it is linked in the article
why can’t we ….why can’t we . why can’t we stop being A***s and decide the greater good is that the records are preserved and let the jobsworth who complained about data protection take a long walk off a short pier and if they are so concerned make them apply for destruction of their own records and let the rest of us get on with our lives, Jeez what is it with this Country every looney is listened to instead of telling them to ******* we spend time and money facilitating them ,, aaaaaggggghhhhhhhh this Country
This issue highlights once again the seriously difficult situation faced by thousands of adopted people in Ireland who have no direct access to their own medical records. It is wrong, very, very wrong :(
Go to newbornscreening.ie and its gives you all the info
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