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Written answers

Monday, 11 September 2017

Department of Health

Newborn Screening Cards

Photo of Louise O'ReillyLouise O'Reilly (Dublin Fingal, Sinn Fein)
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899. To ask the Minister for Health further to Parliamentary Questions Nos. 769 and 770 of 26 July 2017, the position regarding the policy paper on newborn screening cards; the timeframe for the completion and publication of the report; and if he will make a statement on the matter. [37191/17]

Photo of Louise O'ReillyLouise O'Reilly (Dublin Fingal, Sinn Fein)
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900. To ask the Minister for Health further to Parliamentary Questions Nos. 769 and 770 of 26 July 2017, if the policy paper on newborn screening cards will only address the prospective future retention, storage and potential secondary uses of the cards; the policy options being prepared for those cards that are already held; the retrospective options that exist; and if he will make a statement on the matter. [37192/17]

Photo of Louise O'ReillyLouise O'Reilly (Dublin Fingal, Sinn Fein)
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1161. To ask the Minister for Health if he will report on the policy paper being prepared by his Department regarding options to seal the breach of the data protection legislation regarding Guthrie cards retained without consent and to provide for the future retention, storage and potential secondary uses of the cards; the timeframe for the publication of the report; and if he will make a statement on the matter. [38126/17]

Photo of Simon HarrisSimon Harris (Wicklow, Fine Gael)
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I propose to take Questions Nos. 899, 900 and 1161 together.

As I outlined in my previous response to Questions Nos. 769 and 770 of 26 July 2017, following a complaint made to the Data Protection Commissioner in 2009 the State remains in breach of both European Union and national data protection legislation in relation to the retention of newborn screening cards without consent. A policy was developed to address the legal and ethical requirement of the National Newborn Bloodspot Screening Programme (the Programme) and implemented in July 2011. This policy provides for parental consent for the baby to be screened and the card retained for a specific period of time (10 years). During this time, the card can only be used to check the baby's results and for other tests the baby may require and for quality assurance.

The Department of Health hosted a Forum in October 2016 to provide participants from a broad range of areas with the opportunity to engage in dialogue with international experts regarding the retention and possible secondary uses, including research using cards from the archive and in the future. The themes in the Forum report together with international evidence are being considered by officials in my Department to inform policy options regarding the cards retained without consent and to provide prospectively for the future retention, storage and potential secondary uses of the cards. Work on this policy paper is well advanced and will be considered in the coming months.

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