Louise O'Reilly (Dublin Fingal, Sinn Fein)
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769. To ask the Minister for Health his plans further to the report on the newborn screening card archive forum; the position regarding the next steps in the process in dealing with the so called Guthrie cards and data protection; the timeframe for same; and if he will make a statement on the matter. [35320/17]

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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770. To ask the Minister for Health the current policy for the retention of newborn screening cards; his plans to change this; and if he will make a statement on the matter. [35321/17]

Simon Harris (Wicklow, Fine Gael)
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I propose to take Questions Nos. 769 and 770 together.

In late 2009, a complaint was made to the Data Protection Commissioner regarding the indefinite retention of the Newborn Screening Cards (the cards) without consent, which constituted a breach of the Data Protection Acts 1988 and 2003. The complaint was upheld by the Commissioner, who ruled that the Newborn Screening Card archive be destroyed. A policy was developed to address both the legal and ethical requirements of the National Newborn Bloodspot Screening Programme (the programme).

The policy required changes to the programme including retention of the cards for 10 years with consent; and that cards older than 10 years would be destroyed (disposed of in the child’s 11th year). This policy was implemented on 1 July 2011, and provides that parent(s)/guardian(s) are given an information leaflet regarding the programme.

At the time the blood sample is taken (heal prick test), the parent/guardian gives explicit written consent confirming that she/he has received the Parent Information Leaflet; verifies that the details for the baby on the card are correct; consents to the baby being screened and that during the retention period, the card can only be used:

i) to check the baby’s results;

ii) for other tests recommended by the child’s doctor, for which the parent(s) permission will be sought;

iii) for quality assurance to develop and improve the screening programme and the health of babies and families in Ireland.

The agreed policy also required that cards older than 10 years would be disposed of.

The State remains in breach of both European Union and national data protection legislation in relation to the retention of the cards without consent. The primary intention of the programme is to screen all newborn infants in the State for six conditions and has an uptake of 99.9%. As the most successful public health initiative, it is in the public interest that this level of uptake continues and that public trust and confidence in the programme is neither compromised nor undermined in any way.

The Department of Health hosted the 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 to seal the outstanding breach of the Data Protection legislation 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.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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771. To ask the Minister for Health his plans to address the issue of the newborn screening card archive in the upcoming human tissue Bill; and if he will make a statement on the matter. [35322/17]

Simon Harris (Wicklow, Fine Gael)
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It is not proposed to include provisions regarding the newborn screening card archive in the Human Tissue Bill.