Dinny McGinley (Donegal South West, Fine Gael)

I take the Adjournment matter on behalf of my colleague, the Minister for Health, Deputy James Reilly. I thank the Deputy for raising this matter as it provides me with an opportunity to outline to the House the importance attached by the Minister, his Department and the Health Service Executive to the issue. The national newborn bloodspot screening programme, NNBSP, has been in operation since 1966 and screens newborn infants for five conditions including Phenylketonuria, Classical Galactosaemia, Homocystinuria, Maple Syrup Urine Disease, Congenital Hypothyroidism and, from 1 July 2011, Cystic Fibrosis will been included as well.

To comply with data protection legislation, several changes are required to the newborn screening card and the national newborn bloodspot screening programme. Data records associated with each blood spot will also be covered under the forthcoming health information legislation. These changes include the development of a revised newborn screening card, obtaining written consent from the mother to have her newborn infant screened for the conditions described, retaining the card for ten years and retaining the information on the result for 25 years in line with HSE policy on the retention of health care records. The mother's written consent will be included on the card and a new parent information sheet has been developed to provide the necessary information. As a consequence, it had been planned to destroy existing cards which are older than ten years. The baby's newborn screening card will only be used for checking the baby's results, for other tests recommended by the baby's or child's doctor and for which the parents permission will be sought and for quality assurance to develop and improve the screening programme and the health of babies and families in Ireland.

These changes evolved from collaboration between the national newborn bloodspot screening laboratory, Temple Street Children's University Hospital, the Department of Health, the Data Protection Commissioner and the Health Service Executive. Subsequent to this policy being agreed, concerns were raised about the proposed destruction of the Guthrie cards and their retention for other medical purposes. The HSE has been asked to review the situation in the context of the concerns expressed before the proposed changes take effect at year end. The outcome of this review will go to the newborn screening governance group. I thank the Deputy again for his contribution, which will be conveyed to the Minister.

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