Dáil Éireann Debate, Thursday - 23 February 2012
211 Deputy Denis Naughten asked the Minister for Health further to Parliamentary Question No. 463 of 6 December regarding newborn screening, if he will provide an update on the progress made to date; and if he will make a statement on the matter. [10455/12]
Amharc ar fhreagraIn 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 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 DoH and CUH and Temple Street Hospital. A policy was agreed in conjunction with the DPC to address both the legislative and ethical requirements of the National Newborn Screening Programme, which included disposal of archived NSC 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 retention of NSCs and their potential use for secondary purposes, including research. The report and recommendations of the review group were submitted to my office in January 2012. Having carefully considered the issue, I have informed the HSE of my decision in relation to this matter earlier this week. Further, I have requested that the HSE inform those interested parties of that decision in the coming week.
