Eoghan Murphy (Dublin South East, Fine Gael)
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To ask the Minister for Health if he is concerned that the destruction of data obtained through the use of the heel prick test will result in a loss of valuable data that could be used to better understand certain diseases and their genetic links; and if he has considered restrictions on the use of such data instead of its destruction [6276/13]

James Reilly (Dublin North, Fine Gael)
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Following the receipt of a complaint regarding the retention of Newborn Screening Cards (NSCs), the Data Protection Commissioner found that the retention of the cards without consent constituted a breach of the Data Protection Acts 1998 and 2003. There were a number of meetings between the Deputy Data Protection Commissioner, representatives from my Department, the HSE, and the Children's University Hospital, Temple Street which resulted in agreement that NSCs older than 10 years would be destroyed. Retention of NSCs for ten years was deemed appropriate for the purposes of checking an initial diagnosis.

I requested the HSE to conduct a review of this decision. This review examined both the legal and ethical basis for the retention of NSCs and the potential use of the existing cards for research purposes. The Review Group report and recommendations were submitted to me in January 2012. Having carefully considered the issue, I accepted the recommendation of the review group that in order to meet our legal and ethical obligations, particularly in relation to the Data Protection Acts, NSCs older than ten years will be destroyed. The review group also explored how the material could be made available to the research community in a way which was compatible with our ethical and legal obligations.

However, I recognise the potential value of the material for research purposes. As deputies are aware, the HSE has begun an information campaign offering members of the public the opportunity to have their NSC returned to them prior to any destruction of the cards taking place. This will ensure that anyone who wishes to donate their or their child's Newborn Screening Card to research will be afforded the opportunity to do so. The HSE is actively engaging with the research community to facilitate the direct transfer of cards where this may be more convenient for parents. To this end, the HSE has contacted a number of research organisations to inform them of this position and has invited these organisations to provide a plan setting out a governance system for the storage and future use of the card or cards for clinical or research purposes, prior to any agreed transfer. I consider that the people to whom the NSCs relate, or their parents if they are under 18 years of age, are the people who should choose what happens to their cards. I am confident that the approach adopted by the HSE will ensure that their choices will be respected.