Kathleen Lynch (Cork North Central, Labour) | Oireachtas source

I am about to read the official reply but I do not disagree with any of the points made by the Deputies. I thank Deputies Anne Ferris and Billy Kelleher for raising this matter as it provides me with an opportunity to update the House following on the update provided to the Seanad last month by my colleague, the Minister of State, Deputy Dinny McGinley. As Deputies will be aware, the national newborn screening programme tests thousands of children annually to identify medical conditions which, if untreated, result in severe physical, mental, or developmental harm. The screening programme offers the opportunity to intervene and dramatically alter a child's life course.

Screening cards for newborn children taken between 1984 and 2002 were retained without the informed consent of the parents or guardians of the children. Consequently, there is no written consent for the retention or use of these cards for research or other purposes. 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 newborn screening cards should not be retained indefinitely without consent as this breached the Data Protection Acts 1998 and 2003. The Data Protection Commissioner said "[I]t is important to make clear that the position that developed was unlawful and could not be allowed to continue." Following the ruling, a series of meetings were held between the deputy Data Protection Commissioner, representatives from my Department, the Health Service Executive and the Children's University Hospital, Temple Street, which resulted in a number of changes to the national newborn blood spot screening programme. It was agreed with the Data Protection Commissioner that in order to comply with data protection legislation, cards older than ten years would be destroyed. I reiterate there is no written consent from parents for the retention or use of these cards for research or other purposes.

My colleague, the Minister for Health, Deputy James Reilly, requested the HSE to conduct a review of the decision to destroy these cards, following receipt of representations from a number of people and organisations which pointed out their potential value for research. I understand that the issue is to be dealt with at a meeting on 28 March, in advance of the deadline of 31 March 2013. 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. The report and recommendations of the review group were submitted in January 2012. The review reaffirmed the original decision reached in 2010 that in order to meet both our ethical and legal obligations, newborn screening cards older than ten years should be destroyed. Following careful consideration, this recommendation was accepted. The review group also explored how the cards could be made available to the research community in a way that is compatible with ethical and legal obligations.

In the interest of facilitating research, the HSE launched a public information campaign on 8 January 2013. This campaign offered members of the public the opportunity to have their screening cards returned to them prior to any destruction of the cards. This campaign will run until 31 March 2013, after which the retrieval procedure will begin. The length of time it takes will depend on how many cards are to be returned. However, no material will be destroyed before all requests have been processed. My colleague, the Minister, Deputy James Reilly, is seeking information from the HSE as to the effectiveness of its campaign to ensure people have been adequately informed of their rights. The results of the Red C poll on the effectiveness of the campaign are quite telling.

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