Ann Phelan (Carlow-Kilkenny, Labour)
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As this is an issue which appears to have gone below the radar, I welcome the opportunity to raise it.

What is the position vis-À-vis the Data Protection Commissioner and his wish to destroy all the heel-prick data cards that are older than 11 years? This important test, in which blood is taken from the heel and stored on a card, is carried out on all babies born in Ireland. It is used to detect six inherited disorders, including cystic fibrosis. The test is carried out using a sample of the baby's blood taken from the heel. The information from these tests could be invaluable in the future identification and treatment of many diseases that have so far eluded detection. The information stored on these cards could help isolate the reason for previously unexplained deaths, including sudden arrhythmic death syndrome which has already taken its toll on young people in this country. It seems the Data Protection Commissioner is concerned that some data held on babies may be compromised. This information has been collected, by means of a small blood test from newborn babies, since 1966 and has been stored, in confidence, in Temple St Hospital until July of last year. Why were these records moved? Who authorised moving them and where are they now?

The issue appears to relate to consent. From 1966 consent was verbal and later written. However, the storage of the screening cards was not explicitly referred to as part of consenting to the screening programme. A review carried out in 2009 by the Data Protection Commissioner indicated that those newborn screening cards which are currently stored without explicit consent should now be disposed of. Further, it was believed that this might breach European law on data protection. It is now the view that these cards should be destroyed. However, I believe there may be another approach. If a person, whose data are stored on one of these cards, does not wish it to be viewed by anyone under any circumstances, then perhaps it should be destroyed. However, the opposite position might apply. Another person might believe his or her card might contain useful information and may therefore wish it to continue to be stored. That should be the default position. People, who do not want their details kept on record, should make it known, but for those who are happy with the current situation, the information should be kept on record, but still under the proper protections.

If we destroy all the information it will be gone forever. However, if we store it within the bounds of data protection legislation with consent, it could be accessed by those who are entitled to do so and could be used to great effect. As this information could save lives why should we throw that away?

Kathleen Lynch (Cork North Central, Labour)
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Following the receipt of a complaint regarding the retention of newborn screening cards, NSCs, also known as Guthrie cards, the Data Protection Commissioner, DPC, found that the retention of the NSCs without consent constituted a breach of the Data Protection Acts 1998 and 2003. Following numerous meetings between the deputy Data Protection Commissioner, representatives of the Department of Health, the HSE, Cork University Hospital and Temple Street Hospital, it was agreed the NSCs older than ten years would be destroyed. Retention for ten years was deemed appropriate for the purposes of checking an initial diagnosis.

The Minister, Deputy Reilly, requested the HSE to conduct a review of this decision. The review examined the legal and ethical basis for retention of NSCs and the potential use of the existing cards for research purposes. The report and recommendations of the review group were submitted to the Minister in January 2012. Having carefully considered the issue, the Minister accepted the recommendation of the review group, that in order to meet our legal and ethical obligations, particularly under the Data Protection Acts, newborn screening cards older than ten years should be destroyed. However, the Minister recognises the potential value of the material for research purposes, which was why the review group was tasked with exploring ways in which the material could be made available to the research community in a way that is compatible with our ethical and legal obligations.

The HSE will mount an information campaign offering members of the public the opportunity to have their screening cards returned to them, prior to any destruction of the cards taking place. This will ensure that people who wish to donate their or their children's NSCs to research will be afforded the opportunity to do so.

The Minister wishes to reassure the Deputy that the cards have been always stored in Temple Street Hospital and continue to be stored there. They have not been moved. The proposed course of action seeks to ensure public trust and a continued willingness to participate in the national newborn screening programme, a vital public health measure for children and their families. I thank the Deputy for raising this important issue.

Ann Phelan (Carlow-Kilkenny, Labour)
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I thank the Minister of State for that clarification on what is to happen. I am glad that parents will be written to asking them what they want to do with the cards. These cards contain extremely valuable information that has been collected for years. I would regard it as the forerunner to a volunteer database that could be very useful. I draw the attention of the House to the importance of keeping such samples. While I cannot give the exact detail, I recall that a number of years ago a very astute garda held on to samples from a murder scene because he believed that DNA evidence would at some stage be able to help solve crimes. His actions resulted in that crime being solved and led to a conviction. We need to be able to see beyond ten years and need to look much further into the future. I thank the Minister of State for her clarification.

Kathleen Lynch (Cork North Central, Labour)
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I agree entirely with the Deputy. The issue is that we do not know the potential value of this material. We need to give people the opportunity to opt in or out. I believe most reasonable people will opt in on the basis that it has the potential to give us results to particular issues in the future that will benefit all of us.