Thomas Pringle (Donegal South West, Independent)
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To ask the Minister for Health if he will consider extending the deadline of 31 March 2013 for the public to consent to their records or those of their children being kept regarding Guthrie screening cards between 1984 and 2002 under the The National Newborn Bloodspot Screening Programme, and if he will consider creating a public awareness campaign on the issue [16046/13]

Tommy Broughan (Dublin North East, Labour)
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To ask the Minister for Health his position in relation to the retention of newborn screening cards for children born from 1984 to 2011 in view of the recent decision to stop the immediate destruction of this information; and if he will outline his proposals to retain this valuable source of medical information [16394/13]

James Reilly (Dublin North, Fine Gael)
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I propose to take Questions Nos. 1124 and 1171 together.

I have requested that the HSE hold off on the destruction of the (so called) Guthrie Cards, cards which contain blood samples from children born in Ireland dating back to 1984. I have asked for the delay amid concern over the effectiveness of a communication campaign to alert the general public to the issue. I have asked that the delay give time for an expert group to consider the matter further.

The newborn screening cards taken between 1984 and 2002, which contain blood samples from children born in Ireland, were retained without the informed consent of the parents or guardians of the children. There is no written consent from parents for the retention or use of these newborn screening cards taken between 1984 and 2002 for research, or other, purposes.

The Data Protection Commissioner had ruled that the cards should be destroyed by the HSE to comply with a ruling from the Data Protection Commissioner that the indefinite retention of newborn screening cards breached the Data Protection Acts 1998 and 2003.

The HSE has been running a campaign to allow parents of children born between 1984 and 2002 who wish to donate their child’s newborn screening card for research to have the card returned to them. They can then donate them for research purposes.

In the wake of mounting concern from a range of respected bodies about the potential value into the future of the loss of the material, and in the context of low public awareness of the issue, I have requested that no destruction of the cards begins pending legal advice from the Attorney General and before an expert group has had an opportunity to consider the matter further.