Ann Phelan (Carlow-Kilkenny, Labour)

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?

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