Information on Stored Newborn Screening Cards

November 18, 2014.

Screening Card Return Requests are now completed

The HSE has now completed processing and fulfilling requests sent during 2013 for the return or disposal of newborn screening cards. We apologise for the delay in responding to requests, but all requests have now been processed, and where possible, cards have been returned.

Background

All babies born in Ireland are screened for 6 rare conditions soon after birth, so that babies with rare conditions can be given early and appropriate care. This is known as the Heel Prick Test. It involves taking a few drops of blood from the baby's heel onto a screening card for testing. The screening programme was updated in June 2011 and screening cards are now stored with parental consent for 10 years after the test is completed.

The National Newborn Bloodspot Screening Programme has older screening cards from all heel prick tests carried out since 1984 in storage. To comply with national and EU Data Protection law, it was proposed that screening cards from babies born between 1984 and 2002 be disposed of. Many people who did not wish to have their card disposed of applied to the HSE to have their card returned to them in early 2013.

Following concerns raised about the potential future value of Newborn Screening Cards, the Minister for Health indicated on March 25th 2013 that expert advice would be sought to consider if a method can be found to archive the material in a manner that satisfies the concerns of the Data Protection Commissioner. The Minister has requested that no destruction of the Newborn Screening Cards should take place until the Expert Group has had an opportunity to consider the matter.  

The HSE received 32,000 requests for cards to be returned and given this much larger number of requests than was expected, it took a significant period to arrange a process for responding to the requests. This process began in June 2014 and is now complete. The HSE has responded to requests, and where cards were possible to retrieve and identification was available, those cards have been returned. In some cases, it was not possible to return cards and this has been outlined to requesters.

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