James Reilly (Dublin North, Fine Gael)

I thank the Deputy for raising this issue. In late 2009 the Data Protection Commissioner received a complaint from a member of the public about the retention of newborn screening cards. The basis of the complaint which was upheld by the Data Protection Commissioner was that the newborn screening cards should not be retained indefinitely without consent as this constituted a breach of the Data Protection Acts 1998 and 2003.

During 2010 a number of meetings were convened with the deputy Data Protection Commissioner and representatives of the HSE, the Department of Health and the Children's University Hospital, Temple Street. A policy was agreed in conjunction with the Data Protection Commissioner to address both the legislative and ethical requirements of the national newborn screening programme which included disposal of archived newborn screening cards older than ten years.

Following receipt of representations concerning the proposed destruction of archived newborn screening cards, I requested the HSE to conduct a review of this decision. The review examined both the legal and ethical basis for the retention of newborn screening cards and the potential use of the existing cards for research purposes. It is my understanding the review group examined the governance arrangements for the retention and use of newborn screening cards in a variety of jurisdictions, including New Zealand, Australia and the United States. As the Deputy may be aware, legal uncertainties over access to and use of newborn screening cards have led to the destruction of cards in Western Australia, Texas and the Netherlands.

The report and recommendations of the review group were submitted to my office in January. Having carefully considered the issue, I have accepted the recommendation of the review group that, in order to meet our legal and ethical responsibilities, newborn screening cards older than ten years will be destroyed. However, I fully recognise the value of this material for research purposes, as outlined by the Deputy, which was why the review group was tasked with exploring ways in which the material could be made available to the research community in a way that was compatible with our ethical and legal obligations. The international consensus clearly favours seeking explicit consent from an individual and-or his or her parent-guardian for use of previously collected biological material for research purposes. Therefore, in the interests of facilitating research, the HSE will mount an information campaign offering members of the public the opportunity to have their screening card returned to them, prior to destruction of the cards taking place. This will ensure those who wish to donate their or their child's newborn screening card to research will be afforded the opportunity to do so.

The proposed course of action seeks to ensure public trust and a continued willingness to participate in the national newborn screening programme, which is a vital public health measure for children and their families. Given the complexities of this issue and being mindful of the genuine sensitivities of those concerned, I am anxious for the findings of the review group to be published. I will arrange for my Department to liaise with the HSE to have this done as a matter of priority.

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