Health Minister James Reilly says he feels “very uneasy” about the HSE’s plan to destroy newborn screening cards.
The Irish Heart Foundation believe the blood samples on the cards could be genetically tested to identify underlying heart conditions.
The heart and stroke charity issued an urgent reminder to families yesterday that just six days remained for them to reclaim the cards, known as heel prick tests or Guthrie cards.
Dr Reilly said he had a real sense of unease about destroying what was clearly a very valuable bio-bank.
“I want to set up a special group involving the Attorney General’s office and other experts to look at why they were not destroyed in other countries,” he said.
However, he wanted to assure people “absolutely” that none of the cards or the information on them would be used without the consent of individuals.
Due to data protection concerns more than 1m of the cards are marked for destruction after being stored without consent for longer than 10 years, unless a request for their return is received on or before the HSE deadline of Easter Sunday.
The IHF is urging families who lost children and young people born between 1984 and 2002 to sudden cardiac death, to request the return of their child’s vital blood sample immediately.
IHF chief executive, Barry Dempsey, said they were urging all parents affected by sudden cardiac death, to log onto newbornscreening.ie and download a request form to protect their child’s last remaining DNA blood sample.
“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,” he said. “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.”
Fine Gael Senator Colm Burke said it was clear from advice received by the Royal College of Physicians Ireland and his own research that there were crucial provisions in the Data Protection Act that allow for the cards to be preserved if deemed to be of substantial public interest.
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