THE IRISH HEART Foundation has welcomed the government’s decision to protect blood samples from newborns that were due to be destroyed at the end of this week.
The latest announcement will ensure 1,400 families who have been affected by sudden cardiac death will not lose their “last change of a genetic diagnosis”.
A spokesperson for Health Minister Dr James Reilly said that a group of experts is currently being put together to look into the issue, and that he had requested that the destruction of the cards not begin until such time that the expert group would have an opportunity to consider the issue further.
It is hoped the group might look at the possibility of archiving in a manner that would be satisfactory from the point of view of the Data Protection Commissioner. The group is expected to include a person from the Attorney General’s Office.
The spokesperson said that Minister Reilly has noted the concerns from individuals and groups about the loss of the material, and what value it might have in the future. He is also concerned with the degree of public awareness of the issue.
Appreciation
The Irish Heart Foundation’s chief executive Barry Dempsey extended his “deepest appreciation” to Health Minister James Reilly.
“[He] deserved full credit for this decision and our charity welcomes the return to meaningful discussion through an expert group to protect these 1,400 samples and to ensure they are stored appropriately with proper consent.”
So-called Guthrie cards – that had been held for longer than 10 years without consent – were to be destroyed as a result of data protection concerns. The IHF had argued that the heel prick tests contained “precious blood samples” that could be genetically tested to identify underlying heart conditions.
Two weeks ago, the foundation launched the #stopthedestructionnow campaign to ensure that all families affected by sudden cardiac death in a child or teen, had the opportunity to save their child’s newborn screening card from between 1984 and 2002 and hold it for genetic testing in the future.
According to Dempsey, diagnosis using these heel prick test cards can potentially isolate a faulty gene that allows siblings and extended family to be tested for an underlying genetic condition.
“Thanks to the Minister, this hope lives on,” he said.
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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