Written answers

Wednesday, 19 December 2012

Department of Health

Newborn Screening Cards

Photo of Simon HarrisSimon Harris (Wicklow, Fine Gael)
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To ask the Minister for Health when he received the Health Service Executive review group report on newborn screening cards; when this report was pubished; and if he will make a statement on the matter. [57165/12]

Photo of James ReillyJames Reilly (Dublin North, Fine Gael)
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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 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, my Department 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.

In accordance with the policy, from July 1st 2011, the blood portion of the Newborn Screening Card (NSC) will be retained for 10 years and disposed of during the child’s 11th year (for the purpose of confirming an initial diagnosis should this be deemed necessary). Parents/guardians are provided with specific information on the retention of the NSC’s with regard to their use and written consent is sought in this regard. The changes to the NNBSP since 1st July 2011 bring about compliance with both national and EU data protection legislation, uphold ethical principles and meet ethical obligations with regard to consent, privacy and confidentiality.

The agreed policy also provided for the disposal of archived NSCs 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 report and recommendations of the review group were submitted to my office in January 2012. My Department is liaising with the HSE concerning their publication of the report.

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