Heart Foundation launches campaign to stop the destruction of heel-prick testsTuesday 12 March 2013 23.51
The Irish Heart Foundation has launched a campaign to stop the destruction of heel prick tests for newborn babies carried out between 1984 and 2002.
The Newborn Screening Card blood samples are set to be destroyed on 31 March to comply with EU data protection laws.
The IHF says the cards could save the lives of extended family members of more than 1,000 young victims of Sudden Cardiac Death.
Launching the Stop the Destruction campaign, the IHF said that only 12% of the population were aware of the plans to dispose of the cards.
Following a complaint to the Data Protection Commissioner in 2009, a decision was made on legal and ethical grounds to destroy the cards.
A subsequent policy review recommended that samples more than ten years old be destroyed unless their owners or guardians request their return.
The HSE deadline for this request has been set at 31 March, Easter Sunday, after which all other samples will be incinerated.
Since 1966, every child born in the State was subjected to a heel prick.
Although water damage destroyed cards from 1966 to 1984, there are still approximately one million cards covered from 1984 to 2002.
IHF Chief Executive Barry Dempsey said: "The crucial issue of genetic diagnosis was not addressed in the policy review and therefore its recommendations should be urgently re-examined.
"We understand it would be possible to deal with this issue in the upcoming Human Tissue Bill in a way that would take account of both data protection requirements and the need to protect the blood samples of young Sudden Cardiac Death victims.
"But it appears no serious consideration has been given to the possibility of legislation."
"This extraordinary inaction in the face of what is potentially a life or death issue for thousands of people countrywide has to be challenged. Destruction of the cards presents a very real danger to a large group of people.
"The HSE must meet its duty of care to do what it can to protect them."