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Written Answers - Data Protection

Tuesday, 27 March 2012

Dáil Éireann Debate
Vol. 760 No. 3

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 12.  Deputy Mary Lou McDonald Information on Mary Lou McDonald Zoom on Mary Lou McDonald  asked the Minister for Health Information on James Reilly Zoom on James Reilly  his plans to store historical and new Guthrie Cards at Temple Street Hospital, Dublin; the timeline and extent of the upcoming consultation in relation to same; if he has considered an opt-out clause on same, whereby all cards will be stored unless specifically requested by an individual or their parent or guardian that it should be destroyed; and if he will make a statement on the matter. [16269/12]

Minister for Health (Deputy James Reilly): Information on James Reilly Zoom on James Reilly In late 2009, the Data Protection Commissioner (DPC) received a complaint from a member of the public in relation to the retention of Newborn Screening Cards (NSCs). The basis of the complaint (which was upheld by the Data Protection Commissioner) was that the NSCs should not be retained indefinitely without consent.

Soon after I was appointed Minister I requested the HSE to conduct a review of both the legal and ethical basis for retention of NSCs and their potential use for research purposes. The report of the review group was submitted to my office in January 2012. Having carefully considered the issue, I have accepted the recommendation of the review group that, in order to meet our legal and ethical responsibilities, NSCs older than ten years should be destroyed.

However, I fully recognise the value of this material for research purposes, which was why the review group was asked to explore ways in which the material could be made available to the research community that are compatible with our ethical and legal obligations. Consequently, the HSE will mount an information campaign offering members of the public the opportunity to have their screening card returned to them, prior to any destruction of the cards taking place. This will ensure that anyone who wishes to donate their own or their child’s NBC 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, a vital public health measure for children and their families.

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