Eric Byrne (Dublin South Central, Labour)
Link to this: Individually | In context

Question 91: To ask the Minister for Health and Children his plans to delay the destruction of Guthrie cards; and if he will make a statement on the matter. [10108/11]

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

The National Newborn Bloodspot Screening Programme (NNBSP) is in operation since 1966 and already 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 be included.

In order to comply with data protection legislation, a number of changes are now being implemented with regard to the newborn screening card (NSC) and the NNBSP.

These changes include the development of a new NSC, obtaining written consent for the mother to have her newborn infant screened for the above conditions, retaining the NSC for ten years - to be disposed of in the child's 11th year - and that the information pertaining to the result will be retained for 25 years in line with HSE policy on the retention of healthcare records. The mother's written consent will be included on the NSC and a new parent information sheet has been developed to provide the necessary information. As a consequence, it had been planned to destroy the existing set of cards which are older than ten years.

The baby's NSC will only be used for checking the baby's results or for other tests recommended by the baby's/child's doctor and for which the parent(s) permission will be sought; and quality assurance to develop and improve the screening programme and the health of babies and families in Ireland. These changes have evolved from collaboration between the National Newborn Bloodspot Screening Laboratory, Children's University Hospital, Temple Street, the Department of Health and Children, the Data Protection Commissioner and the Health Service Executive. Subsequent to this policy being agreed a request has been received to retain the cards for other possible medical purposes. This is being reviewed by the HSE.