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More than a million newborn screening cards destroyed

By James Fogarty - 10th Jun 2024

newborn screening cards destroyed

Approximately 1.5 million newborn screening cards were destroyed last year as they did not comply with data protection legislation.

A spokesperson for the Department of Health told the Medical Independent (MI) it has received confirmation from the Office of the Chief Executive of Children’s Health Ireland (CHI) that the relevant 1984-2011 bloodspot screening archive was disposed of on 16 May 2023.

“This is in line with a long-standing agreement with the Data Protection Commissioner, which has been informed of this outcome,” the spokesperson told MI.

“Newborn screening cards obtained after July 2011 comply with data protection legislation. Parents/guardians receive information on how the screening cards are to be used and the duration for which they are to be retained. CHI has put in place a process for the disposal of cards going forward.”

The CHI said approximately 1.5 million newborn screening cards, from between 1984 and July 2011, went through a shredding process and were then incinerated.

The national newborn bloodspot screening programme has been in place since 1966. It offers screening to all newborn infants for a number of rare, but serious conditions. The so-called ‘heel prick’ test involves taking a blood sample from the baby and placing it on a card for testing.

The cards have personal identifiable information of the baby and mother.

“The Minister for Health has made considerable investment in the newborn screening programme in recent years and significantly increased the number of conditions Ireland screens for,” the Department spokesperson said.

It had been argued that the archive should be retained for research purposes, which could potentially contribute to the overall health and wellbeing of the population.

One response to “More than a million newborn screening cards destroyed”

  1. margaretcollcrowe@gmail.com says:

    This is vandalism of the worst sort. What a disgrace. A unique data set for future research destroyed by fools who did not understand its value.

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