Irish Times-Health
Tuesday, 7 February 2012
Ronan McGreevy
Campaigners involved in raising awareness of sudden arrhythmic death syndrome (Sads) have called on the Government not to destroy many of the records of children born in the State since 1984.
The National Newborn Bloodspot Screening Programme, which uses the heel prick test, is in operation since 1966.
It was set up to screen for rare genetic diseases. It is proposed to retain newborn screening cards for 10 years, in keeping with new data protection legislation, and to destroy the rest. The Children’s University Hospital, Temple Street, keeps all the samples on what are known as Guthrie cards. Most of the samples before 1984 were destroyed by water contamination, but those gathered since have been retained and are regarded as a valuable database.
Dr Joe Galvin, from the family heart screening clinic at the Mater hospital, and the Irish Sudden Cardiac Death Council, has asked Minister for Health James Reilly not to destroy the samples.
Dr. Galvin said the cards were a potentially valuable resource in identifying people at risk from Sads, which is also known as sudden adult death syndrome.
A statement from the HSE said consent arrangements were reviewed when cystic fibrosis was added to the list of diseases to be screened for last year.
“As part of this new consent process, the arrangements for archived bloodspot screening cards were reviewed, in discussion with the Department of Health and the Office of the Data Protection Commissioner. The outcome of that review is expected shortly”.