James Reilly (Dublin North, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I propose to take Questions Nos. 529 and 538 together.

late 2009 the Data Protection Commissioner received a complaint from a member of the public on the retention of NSCs. The basis of the complaint, which was upheld by the Data Protection Commissioner, was that NSCs should not be retained indefinitely without consent as this breached the Data Protection Acts 1998 and 2003. There followed a series of meetings between the Deputy Data Protection Commissioner, representatives from my Department, the Health Services Executive (HSE) and the Children's University Hospital, Temple Street, which resulted in the decision to destroy existing cards that are older than ten years. This is to rectify a situation which had developed and which, in the words of the Data Protection Commissioner, "...was unlawful and could not be allowed to continue".

I received representations from a number of people and organisations, who pointed out their potential value for research. Consequently, I requested the HSE to conduct a review of the decision to destroy these cards. This review examined both the legal and ethical basis for retention of NSCs and the potential use of the existing cards for research purposes. The report and recommendations of the review group were submitted to me in January 2012. The review group supported the decision to destroy cards more than ten years old.

However, the review group also explored how the cards could be made available to the research community in a way which is compatible with ethical and legal obligations. It must be remembered that there is no written consent from parents for the retention or use of these newborn screening cards taken before 2002 for research, or other, purposes. As Deputies are aware, Part 4 of the Disability Act 2005 deals with genetic testing. Section 42.1 (b) which states that genetic testing shall not be carried out on a person unless "the consent of the person to the processing of any genetic data to be derived from the testing has been obtained in accordance with the Acts". Sections 41.3 and 41.4 also point out what information should be provided to people before processing of genetic information and make clear it is an offence to process genetic information without the consent of the person concerned.

line with its recommendations, the HSE began an information campaign offering people the opportunity to have their screening card returned to them. This campaign will run until 31 March 2013, after which the retrieval procedure will begin. I have been assured that no material will be disposed of before all requests received before 31 March 2013 have been processed.