Public urged to seek newborn blood samples
Over a million tests to be destroyed; Could save family of SAD victims, IHF
The Irish Heart Foundation today launched a national campaign to has called for a halt to the destruction of newborn screening card blood samples which could save the lives of extended family members of more than 1,000 young victims of Sudden Cardiac Death. Pictured are mothers from the SADs support group with photos of their deceased sons: Monica Martinfrom Rialto (who lost her son Connor, aged 16, in 2005) , Eileen Nevinfrom Clondalkin (who lost her son Stephen, aged 18, in 2007) , Sally Hegarty from Rathfarnham (who lost her son Rory, aged 16, in 2009) and Maureen KellyChair of the SADS Support Group (who lost her son Daragh, aged 21, in 2003) . Photograph: Leon Farrell / Photocall Ireland
Families and young people have been urged to request newborn blood samples held by the State, before over a million of them are destroyed after March 31st.
A genetic diagnosis using the samples could help to save the lives of the extended family members of over 1,000 young people born over the 18 year period who died from sudden cardiac death, the foundation said.
Blood samples could in future identify an underlying genetic abnormality so that family members of those who died could themselves be detected and take steps to avoid risk factors like avoiding sports or certain medication, cardiologist and chair of the IHF’s sudden cardiac death council Dr Joe Galvin said.
The cards were a “unique bio bank of vital genetic data covering a generation,” IHF medical director Dr Angie Brown said. Destroying them could “cost lives”and data protection could not take precedence over human life, she said.
The foundation also raised concern about lack of awareness of the Easter Sunday deadline for requesting the card. A Red C Poll conducted for the IHF found that 12 per cent of adults were aware of the plans . “Inaction” in the face of a life or death issue for thousands “has to be challenged” IHF chief executive Barry Dempsey said.
The HSE said it had received about 1,000 request forms to date. Notices were placed in six national newspapers in January, a press release was issued and the topic was “widley covered” in the media, the HSE said. The HSE infoline received some 200 phone calls on the issue since January, it said.
Minister for Health James Reilly was “seeking information from the HSE as to the effectiveness of their campaign to ensure people have been adequately informed about their rights,” the Department said in a statement. “No material will be destroyed before all requests have been processed,” it said.
The HSE intends to destroy the screening cards on foot of a ruling in 2009 from the Data Protection Commissioner that its retention of cards breached regulations.
The Government made the final decision to destroy the cards last year on the recommendation of a HSE expert group . There is “no written consent from parents for the retention or use of these newborn screening cards taken between 1984 and 2002 for research, or other, purposes,” the Department of Health said in a statement .
The National Newborn Bloodspot Screening Programme has been used in the State since 1966 to screen for rare genetic diseases. Sampled are stored at Temple Street hospital but most before 1984 were destroyed by water contamination. Parents have had the right to opt out of the test since a 2001 and since 2011 parents have been asked for consent to take the samples.
It would be possible to deal with data protection requirements and to the need to protect blood samples of young sudden cardiac death victims in the forthcoming Human Tissue Bill, Mr Dempsey said. “It appears no serious consideration has been given to the possibility,” he said.