Kathleen Lynch (Cork North Central, Labour)

Following the receipt of a complaint regarding the retention of newborn screening cards, NSCs, also known as Guthrie cards, the Data Protection Commissioner, DPC, found that the retention of the NSCs without consent constituted a breach of the Data Protection Acts 1998 and 2003. Following numerous meetings between the deputy Data Protection Commissioner, representatives of the Department of Health, the HSE, Cork University Hospital and Temple Street Hospital, it was agreed the NSCs older than ten years would be destroyed. Retention for ten years was deemed appropriate for the purposes of checking an initial diagnosis.

The Minister, Deputy Reilly, requested the HSE to conduct a review of this decision. The review examined 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 the Minister in January 2012. Having carefully considered the issue, the Minister accepted the recommendation of the review group, that in order to meet our legal and ethical obligations, particularly under the Data Protection Acts, newborn screening cards older than ten years should be destroyed. However, the Minister recognises the potential value of the material for research purposes, which was why the review group was tasked with exploring ways in which the material could be made available to the research community in a way that is compatible with our ethical and legal obligations.

The HSE will mount an information campaign offering members of the public the opportunity to have their screening cards returned to them, prior to any destruction of the cards taking place. This will ensure that people who wish to donate their or their children's NSCs to research will be afforded the opportunity to do so.

The Minister wishes to reassure the Deputy that the cards have been always stored in Temple Street Hospital and continue to be stored there. They have not been moved. 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. I thank the Deputy for raising this important issue.

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