The Irish Heart Foundation (IHF) has launched a campaign to halt the destruction of life-saving blood samples. The Daily Shift’s Aaron McNicholas reports…
The Stop the Destruction campaigners are urging the public to request the return of their family’s blood sample cards before 31 March, the deadline set by the Health Service Executive (HSE).
More than 1,000 victims of sudden cardiac death are among those whose cards will be destroyed after this deadline.
The blood samples are critical to identifying gene mutations responsible for conditions that lead to these deaths, according to Dr Joe Galvin, chairman of the Irish Heart Foundation’s Sudden Cardiac Death Council.
Blood samples are stored on a card known as the newborn screening card, also called the Guthrie card. These cards are made after every newborn baby in Ireland undergoes a heel prick test to obtain a blood sample.
Up to 1.5 million cards dating from 1984 to 2002 are due to be destroyed due to EU data protection laws prohibiting their storage without consent.
“These cards will contain the last remaining DNA samples on approximately 1,400 young people who died suddenly and unexpectedly between 1984 and 2002,” Dr Galvin said.
“This is a terrible mistake. This is the loss of a great opportunity for us to identify the gene mutation in these families, which in future generations may lead to thousands of sudden cardiac deaths in young people.”
Sally Hegarty’s 16-year-old son Rory died in February 2009, apparently due to SADS – sudden arrhythmic death syndrome. This is an inherited genetic condition which does not show up in a post mortem examination.
Rory’s death led to fears over the health of Ms Hegarty’s two other children – Sadhbh and Neil. Ms Hegarty recalls the experience as a “living nightmare.”
“My children continue to attend screening once a year. So far the tests have been negative, and the more negative tests they have the less likely they are to have inherited the condition. I have been assured that my children are low risk. But this is poor comfort to me. I don’t want any risk.”
Ms Hegarty has requested Rory’s newborn screening card from the HSE. She hopes that in the future, genetic testing will allow experts to isolate the faulty gene so her children can be tested to prove they have not inherited it.
Just 12% of Irish adults are aware of the HSE’s plans to dispose of the cards, according to a poll conducted by the IHF.
“It is definitely the Department of Health and the HSE’s intention to inform or to have informed Irish people of this matter,” said Barry Dempsey, chief executive of the IHF.
“They took some 6×2-inch newspaper advertisements on one day in January. They tried to pack all of the information into those advertisements and they were quite small.”
Speaking at the launch of the IHF’s campaign at the Buswells Hotel in Dublin, Mr Dempsey said the State had a responsibility to ensure that the public is properly informed about the destruction of the cards.
When asked for comment, a HSE spokesperson reiterated the data protection regulations that require the disposal of the cards. Dr Galvin said the IHF believes it is possible to obtain an exemption by legislation so the cards can be preserved without the need for consent.
Click below to listen to Mr Dempsey launching this morning’s press conference about the start of the Stop the Destruction campaign.