Dáil Éireann Debate, Thursday - 14 February 2013
351. Deputy Dominic Hannigan asked the Minister for Health if he has any other options to consider before all Guthrie cards from pre-2002 are destroyed; the way his Department is contacting parents of children whose records are involved to ask for their consent before they are destroyed; if an opt out consent system is being considered by him; and if he will make a statement on the matter. [7986/13]
View answerIn late 2009 the Data Protection Commissioner received a complaint from a member of the public on the retention of NSCs. The basis of the complaint, which was upheld by the Data Protection Commissioner, was that NSCs should not be retained indefinitely without consent as this breached the Data Protection Acts 1998 and 2003. There followed a series of meetings between the Deputy Data Protection Commissioner, representatives from my Department, the Health Services Executive (HSE) and the Children's University Hospital, Temple Street, which resulted in the decision to destroy existing cards that are older than ten years. I received representations from a number of people and organisations, who pointed out their potential value for research. Consequently, I requested the HSE to conduct a review of the decision to destroy these cards. This review examined both the legal and ethical basis for retention of NSCs and the potential use of the existing cards for research purposes. The report and recommendations of the review group were submitted to me in January 2012. The review group supported the decision to destroy cards more than ten years old. Following careful consideration I accepted this recommendation.
However, the review group also explored how the cards could be made available to the research community in a way which is compatible with ethical and legal obligations. It must be remembered that there is no written consent from parents for the retention or use of these newborn screening cards taken before 2002 for research, or other, purposes. In line with its recommendations, the HSE has begun an information campaign offering people the opportunity to have their screening card returned to them, prior to any cards being destroyed. I have asked the HSE to reply directly to the Deputy setting out how people can donate, or give consent for the donation of, NSCs for research purposes; and providing details of their information campaign.
