Dáil Éireann Debate, Wednesday - 23 January 2013
238. Deputy Denis Naughten asked the Minister for Health his plans to communicate the benefits of the donation of newborn bloodspot screening cards for medical research in view of his Departments advertisement last Thursday; if a communication strategy for the donation of such cards and long term provision for the storage of such cards was put in place in advance of the advertisement; and if he will make a statement on the matter. [3350/13]
View answerIn late 2009, the Data Protection Commissioner received a complaint from a member of the public in relation to the retention of Newborn Screening Cards. 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 Department of Health, the Health Service Executive, and Temple Street, and Cork University Hospitals. 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 1 July 2011, the blood portion of the Newborn Screening Card (NSC) will be retained for ten 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 National Newborn Screening Programme since 1 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. Arrangements have been put in place by the HSE for any person who prefers that their newborn screening card is not disposed of, to have it returned to them. They are free to donate these cards for medical research.
