Calls for 'priceless resource' of heel prick test results to be saved
The National Newborn Bloodspot Screening Programme, or heel prick test, screens for six rare genetic diseases. These are Phenylketonuria (PKU), Homocystinuria, Maple Syrup Urine Disease, Classical Galactosaemia, Congenital Hypothyroidism and Cystic Fibrosis. Photograph: Getty Images
The Government faces strong medical opposition over its plans to destroy the Guthrie cards, writes RONAN MCGREEVY
Since 1966 every child born in the State has been subject to a heel prick which is taken shortly after birth.
The National Newborn Bloodspot Screening Programme, to give it its proper name, screens for six rare genetic diseases. These are Phenylketonuria (PKU), Homocystinuria, Maple Syrup Urine Disease, Classical Galactosaemia, Congenital Hypothyroidism and, most recently, Cystic Fibrosis.
The results are stored on what are known as Guthrie cards which have been kept in the archives at the Children’s University Hospital in Temple Street.
The cards held between 1966 and 1984 were destroyed by water contamination, but those since 1984 remain, approximately a million in total.
The Government now intends to destroy all the screening cards between 1984 and 2002 on foot of a ruling in 2009 from the Data Protection Commissioner that the retention of such cards is in breach of privacy regulations.
The Department of Health and the Health Service Executive have given the public until March 31st to consent to their records or those of their children being kept. Otherwise, they will be destroyed. Each year, cards that are more than 10 years old will be destroyed.
As the deadline approaches, the issue has become an emotive one with many medical professionals decrying the proposed action as unnecessary and a waste of potentially valuable biomedical data.
Opponents say the information could be used as a future resource to detect illnesses as diverse as sudden adult death syndrome and haemochromatosis. The strength of feeling about the issue was illustrated in a letter to this newspaper by professor of genetics at Trinity College Dublin, David McConnell last week.
Prof McConnell likened the future destruction of the record to the “modern equivalent of burning the Custom House, or destroying the birth certificates of all born in Ireland”. He said it would be a “disaster”.
“If these records are destroyed, it will be the worst act of cultural and social vandalism carried out by our Government since 1922,” he concluded.
He explained the Guthrie cards could be valuable for individuals and collectively.
“It would also allow the health authorities to obtain a more accurate picture of the health risks of the Irish people as a whole, and this would allow us to introduce more valuable and effective health services.”
He cited evidence of one disease, Haemochromatosis (HC), as a disease which the Guthrie cards can be helpful in detecting.