Dáil Éireann Debate, Tuesday - 6 March 2012
570 Deputy Simon Harris asked the Minister for Health the contact his office has had with the Health Service Executive and the Data Protection Commissioner regarding the retention and storage of Guthrie cards; and if he will make a statement on the matter. [12672/12]
View answer571 Deputy Simon Harris asked the Minister for Health if he will explore ways of overcoming any data protection issues in relation to existing Guthrie cards in order that the valuable medical and genetic data on these cards can be retained with the consent of the appropriate persons; if he will consider examining governance structure which could be put in place to make this possible; and if he will make a statement on the matter. [12673/12]
View answer572 Deputy Simon Harris asked the Minister for Health if he will discuss with his counterparts in Australia, New Zealand and the state of California ways of putting governance structures in place to ensure the retention of existing Guthrie cards which contain important genetic and medical data for many families; and if he will make a statement on the matter. [12674/12]
View answerI propose to take Questions Nos. 570 to 572, inclusive, together.
Following receipt of a complaint regarding the retention of Newborn Screening Cards (NSCs) to the Data Protection Commissioner, the Commissioner decreed that NSCs should not be retained indefinitely as this constituted a breach of the Data Protection Acts 1998 and 2003. Subsequently, a number of meetings were held with the Deputy Data Protection Commissioner and representatives of the Department of Health, Health Service Executive and relevant hospital personnel. A policy was agreed in conjunction with the Data Protection Commissioner to address both the legislative and ethical requirements of the National Newborn Screening Programme, which included disposal of archived NSC's older than ten years.
As I was aware of the concern regarding the proposed destruction of archived Newborn Screening Cards, soon after I was appointed Minister I requested the HSE to conduct a review of this decision. The review examined both the legal and ethical basis for retention of NSCs and the potential use of the existing cards for research purposes. It is my understanding that the review group examined the governance arrangements for the retention and use of NSCs in a variety of jurisdictions including New Zealand, Australia and the U.S.A. As the Deputy may be aware, legal uncertainties over access to and use of NSCs has led to the destruction of cards in Western Australia, Texas and The Netherlands.
The report and recommendations of the review group were submitted to my office in January 2012. Having carefully considered the issue, I have accepted the recommendation of the review group that in order to meet our legal and ethical responsibilities, newborn screening cards over ten years old will be destroyed. However, I fully recognise the value of this material for research purposes, which was why the review group was tasked with exploring ways which the material could be made available to the research community in a way which were compatible with our ethical and legal obligations. The international consensus clearly favours seeking explicit consent from an individual and/or their parent/guardian for use of their previously collected biological material for research purposes.
Therefore, in the interests of facilitating research, the HSE will mount an information campaign offering members of the public the opportunity to have their screening card returned to them, prior to any destruction of the cards taking place. This will ensure that anyone who wishes to donate their or their child's NSC to research will be afforded the opportunity to do so. The proposed course of action seeks to ensure public trust and a continued willingness to participate in the National Newborn Screening Programme which is a vital public health measure for children and their families.
