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Enabling Clinical and Translational Research

Minister for Health urged to preserve archive of newborn screening cards as a resource to improve health

Date Posted: 18 Apr 2012

Molecular Medicine Ireland and specialist health professionals and organisations have called on the Minister for Health, Dr James Reilly TD, to reconsider his decision to destroy the archive of newborn screening card blood samples. They strongly believe that this archive of blood samples is a great clinical and research resource to improve health and should be protected within an appropriate legislative and governance framework.

As part of the most successful National Metabolic Diseases Screening Programme, blood samples, were taken from newborn children in Ireland from 1964 until July 2011 and stored on cards in Temple Street Hospital. However, a recent ruling by the Data Protection Commissioner stated that the archive should not be retained indefinitely because there was no written consent by donors to such storage and as such, retention constituted a breach of the Data Protection Acts 1998 and 2003. On the advice of a HSE Review Group, Minister James Reilly has decided that archived newborn screening bloodspots older than ten years should be destroyed. Individuals will be given the opportunity to claim their archived card before the collection is destroyed.

A number of leading health professionals have publically voiced their concern at the Minister’s decision, including Dr Joseph Galvin, Cardiologist, Mater Misericordiae University and Connolly Hospitals. Dr Galvin’s letter (link) to the The Irish Times and Irish Independent newspapers which was co-signed by Professor Tim O’ Brien of NUI Galway and MMI Director, the Irish Heart Foundation and Sudden Cardiac Death Council, among others, highlights the diagnostic possibilities of the newborn screening cards in the identification of genetic abnormalities associated with diseases such as Sudden Arrhythmic Death Syndrome (SADS) and Cystic Fibrosis.

Focusing his case on SADS, which accounts for a significant number of deaths every year among Ireland’s young population, Dr Galvin says the genetic analysis of blood samples of SADS victims provides a unique opportunity to identify the underlying genetic mutation responsible for the deaths and permits identification of at-risk family members.

On 14 March, Mr Tom Lynch, Chair of MMI, wrote (link) on behalf of MMI to the Minister for Health asking the Minister to examine every option to protect, by legislation, the archive which MMI views as 27 years of a shared, stored genetic resource to improve the health of the people of this island. .

In particular, MMI urges the Minister to protect the archive in the public interest with a legislative framework that would meet the requirements of the European Directive on Data Protection (95/46/EC) and the Charter of Fundamental Rights of the Lisbon Treaty. MMI also asks the Minster to consider how Australia and New Zealand legally protected their archives of new born screening cards when faced with a similar challenge.

The Faculty of Pathology of the Royal College of Physicians and the Irish Society of Gastroenterology have also called upon the Minister for Health to retain the archive as a valuable resource to improve health.

The second half of RTE’s Prime Time on 20 March 2012 reported on the issue of the proposed destruction of the newborn screening cards, interviewing experts on both sides. You can view this programme on RTE Player at: http://www.rte.ie/news/av/2012/0320/primetime.html. (Use the cursor to fast forward to halfway point.)