John O'Mahony (Mayo, Fine Gael)
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Question 246: To ask the Minister for Health the way a person can retrieve their personal card stored on the DNA database resulting from the blood samples taken from newborns and the exact procedure they need to follow; and if he will make a statement on the matter. [17080/12]

James 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, 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.

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. Having carefully considered the issue, I have accepted the recommendation of the review group, that in order to meet our legal and ethical responsibilities, newborn screening cards older than ten years will be destroyed. The international consensus clearly favours seeking explicit consent (rather than opt out) from an individual and/or their parent/guardian for use of their previously collected biological material (including NCS's) for any other purpose than for which it was collected.

The HSE is developing an information campaign offering members of the public the opportunity to have their NSC 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 NSC to research will be afforded the opportunity to do so. I have requested the HSE to provide an outline of the procedures to be followed for the retrieval by members of the public of their NSCs. 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.