Dáil Éireann Debate, Tuesday - 26 March 2013
534. Deputy Clare Daly asked the Minister for Health if he will direct the Health Service Executive not to destroy the bio-bank of Guthrie cards on or after 31 March in order that there can be proper discussion regarding same in a more informed way and if necessary to enact legislation to save these cards. [14850/13]
View answer538. Deputy Michael Lowry asked the Minister for Health if he will detail the steps that have been taken to notify those living abroad of the destruction of heel prick/Guthrie tests for those born between 1984 and 2002; if he is satisfied that due notification has been given both nationally and abroad; if he will ensure that any move to destroy these tests is postponed until due notification is given; and if he will make a statement on the matter. [14881/13]
View answer557. Deputy Nicky McFadden asked the Minister for Health the current position in relation to the retention/destruction of newborn screening card blood samples, also known as Guthrie cards; if he will acknowledge the important genetic information provided by these cards to obtain genetic diagnosis and detect cardiac conditions; if the issue could be dealt with in the upcoming Human Tissue Bill so that both data protection requirements and the protection of blood samples can be taken into account; and if he will make a statement on the matter. [14982/13]
View answer565. Deputy Joe McHugh asked the Minister for Health his views on the database of Guthrie cards and on its availability for usage by the Health Service Executive as a resource for supporting health service delivery into the future. [15074/13]
View answer574. Deputy Thomas Pringle asked the Minister for Health if he will consider introducing legislation to allow for the preservation of important medical data in view of the decision to destroy all Guthrie screening cards between 1984 and 2002 under the national newborn bloodspot screening programme, containing potentially valuable biomedical data for rare genetic diseases; and if he will make a statement on the matter. [15141/13]
View answer575. Deputy Thomas Pringle asked the Minister for Health his plans to reverse the decision to destroy all Guthrie screening cards between 1984 to 2002 under the national newborn bloodspot screening programme in view of the volume of potentially valuable biomedical data for rare genetic diseases; and if he will make a statement on the matter. [15142/13]
View answerI propose to take Questions Nos. 534, 538, 557, 565, 574 and 575 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 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.
It was intended that the retrieval procedure will begin after the ending of the campaign but public awareness appears to be low. The length of time it could take for retrieval will depend on how many cards have to be returned, however no material will be destroyed before all requests have been processed.
In the wake of mounting concern from a range 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 before an expert group has had an opportunity to consider the matter further.
I have requested the group, which will involve representatives from the Attorney General’s Office, consider if a method can be found to archive the material in a manner that satisfies the concerns of the Data Protection Commissioner.
