Anne Ferris (Wicklow, Labour)
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I thank the Ceann Comhairle for selecting this topical issue as it is one that must be dealt with the greatest urgency. The Irish Heart Foundation has been running a campaign to safeguard Guthrie cards over ten years old which are scheduled to be destroyed by 31 March. These cards, which number nearly one million, are very important as they contain priceless genetic information, including the ability to identify those at risk of sudden cardiac death. I understand the decision to destroy them came about because they were in breach of data protection legislation. I certainly respect that a person's data is of the utmost importance and must be protected. However, I do not believe the correct balance has been struck on this matter. The arbitrary destruction of these cards is too extreme a response and I call for it to be suspended.

Recent polling illustrates that the HSE's information campaign has been ineffective with only 12% of the population aware that the cards are to be destroyed. It is clear that the crucial issue of genetic diagnosis was not addressed in the policy review.

The human tissue Bill could take account of both the data protection requirements and the need to protect the Guthrie cards by providing for an opt-out system. Other countries such as New Zealand, Sweden and Denmark, have legislated to protect these cards. This unique bio-bank of vital genetic data should not be destroyed. I urge the Minister of State not to allow this to happen.

Billy Kelleher (Cork North Central, Fianna Fail)
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I endorse everything Deputy Ferris has said. The deadline is 31 March but I ask the Minister of State to consider rowing back on that deadline and entering into further discussions about data protection. I do not think the full import of the destruction of these cards has been considered. It would be a very great loss of genetic information in the context of modern technology and advances in genetic and DNA diagnostics. Once these cards are destroyed we will never be able to recover that information. The Irish Heart Foundation has strong views on this issue, explaining that these samples contain priceless genetic information that can be used to identify people at risk of sudden cardiac death. Unless the destruction is halted, we will lose the only remaining opportunity to obtain a genetic diagnosis for the extended family members of more than 1,000 infants, children and young adults who were victims of sudden cardiac death. Those cards are in the possession of the State. Cardiac conditions which may be fatal if untreated could go undetected with the destruction of these cards.

As Deputy Ferris pointed out, an opt-out system is available in other countries; the destruction of a card is only done at the request of the owner. I am convinced that most people do not know this is being planned. This debate may be of benefit in raising awareness of what is going to happen if the deadline is not extended beyond 31 March 2013. An extension would at least allow people to request the retention of these cards if that is possible.

I urge an extension of the deadline and further discussion. As Deputy Ferris said, the human tissue Bill may be a legislative mechanism for addressing this issue to ensure that this very important body of DNA information is retained rather than destroyed. Such destruction could cost lives, particularly considering the advances in DNA and genetic diagnostics.

Kathleen Lynch (Cork North Central, Labour)
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I am about to read the official reply but I do not disagree with any of the points made by the Deputies. I thank Deputies Anne Ferris and Billy Kelleher for raising this matter as it provides me with an opportunity to update the House following on the update provided to the Seanad last month by my colleague, the Minister of State, Deputy Dinny McGinley. As Deputies will be aware, the national newborn screening programme tests thousands of children annually to identify medical conditions which, if untreated, result in severe physical, mental, or developmental harm. The screening programme offers the opportunity to intervene and dramatically alter a child's life course.

Screening cards for newborn children taken between 1984 and 2002 were retained without the informed consent of the parents or guardians of the children. Consequently, there is no written consent for the retention or use of these cards for research or other purposes. In late 2009, the Data Protection Commissioner received a complaint from a member of the public about the retention of newborn screening cards. The basis of the complaint, which was upheld by the Data Protection Commissioner, was that newborn screening cards should not be retained indefinitely without consent as this breached the Data Protection Acts 1998 and 2003. The Data Protection Commissioner said "[I]t is important to make clear that the position that developed was unlawful and could not be allowed to continue." Following the ruling, a series of meetings were held between the deputy Data Protection Commissioner, representatives from my Department, the Health Service Executive and the Children's University Hospital, Temple Street, which resulted in a number of changes to the national newborn blood spot screening programme. It was agreed with the Data Protection Commissioner that in order to comply with data protection legislation, cards older than ten years would be destroyed. I reiterate there is no written consent from parents for the retention or use of these cards for research or other purposes.

My colleague, the Minister for Health, Deputy James Reilly, requested the HSE to conduct a review of the decision to destroy these cards, following receipt of representations from a number of people and organisations which pointed out their potential value for research. I understand that the issue is to be dealt with at a meeting on 28 March, in advance of the deadline of 31 March 2013. The review examined both the legal and ethical basis for the retention of newborn screening cards and the potential use of the existing cards for research purposes. The report and recommendations of the review group were submitted in January 2012. The review reaffirmed the original decision reached in 2010 that in order to meet both our ethical and legal obligations, newborn screening cards older than ten years should be destroyed. Following careful consideration, this recommendation was accepted. The review group also explored how the cards could be made available to the research community in a way that is compatible with ethical and legal obligations.

In the interest of facilitating research, the HSE launched a public information campaign on 8 January 2013. This campaign offered members of the public the opportunity to have their screening cards returned to them prior to any destruction of the cards. This campaign will run until 31 March 2013, after which the retrieval procedure will begin. The length of time it takes will depend on how many cards are to be returned. However, no material will be destroyed before all requests have been processed. My colleague, the Minister, Deputy James Reilly, is seeking information from the HSE as to the effectiveness of its campaign to ensure people have been adequately informed of their rights. The results of the Red C poll on the effectiveness of the campaign are quite telling.

Anne Ferris (Wicklow, Labour)
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I thank the Minister of State for her response. She is correct that the Red C poll shows that only 12% of the population are aware that the cards are to be destroyed. This is a telling statistic which is a reason for the deadline to be extended. The importance of these cards cannot be overestimated. Information supplied by the Irish Heart Foundation today states that the Dutch Parliament is currently reviewing legislation to protect future Guthrie cards. Ten years ago, the Dutch Government ordered the destruction of similar cards, and this decision has been regretted ever since. We do not want to be in the same situation in ten years' time. Measures could be included in the human tissue Bill. I ask the Minister of State to say how the issue will be dealt with on 28 March.

Billy Kelleher (Cork North Central, Fianna Fail)
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I thank the Minister of State for her reply. The Red C poll showing a figure of 12% awareness is indicative. We all live by Red C polls in this House. It is clear that the information campaign is not resonating with the public. Conditions such as haemochromatosis and risks such as sudden cardiac death could be identified from the DNA information on these cards. I understand the complexity and constraints of the issue. I urge the Minister of State to see if the deadline can be extended. Perhaps the Attorney General could advise whether the human tissue Bill could be a means of addressing this issue. We could very easily regret the destruction of such a significant body of information, which could be of great benefit to the generations coming after us. I urge caution in this regard. I ask the Minister of State to use all possible mechanisms between now and 31 March. As the Red C poll has shown, nobody knows that this is happening.

Kathleen Lynch (Cork North Central, Labour)
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I thank the Deputies. The Joint Committee on Health and Children will be dealing with the issue in detail on 28 March. It is important that this meeting is being held in advance of the deadline of 31 March 2013. It is very difficult to deal with an issue retrospectively. However, we need to consider further how to deal with it.

The Data Protection Commissioner indicated that the situation which has developed is unlawful. Our job is to deal with legislation and make things either lawful or unlawful. That is what we do every day of the week.

The information contained on the cards in question relates to matters about which we do not even know yet. It is an incredible resource, particularly in the context of any developments which might take place in the future in respect of diabetes, liver disease and - as the Irish Heart Foundation has pointed out - cardiac-related issues. Imagine what would be the position if it were possible to check the records to see who might have a predisposition to sudden adult death syndrome and to discover how we might deal with it. The type of resource that is available in this instance is both unique and incredible. We must examine how we can ensure that this resource will be protected. Perhaps the way to proceed is by introducing an opt-out clause. This is a very serious matter and we should not be rushed into dealing with it. We should take on board the Data Protection Commissioner's opinion but we must also consider how we can protect the resource.

Billy Kelleher (Cork North Central, Fianna Fail)
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I thank the Minister of State.