25 years worth of Irish baby DNA

January 13, 2010 by Infowars Ireland

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Almost every baby born in Ireland has a blood sample taken soon after birth which is then screened for five genetic diseases. Basically the only babies not to have the “heel-prick test” taken by a health worker would be those whose parents are ideologically opposed to “invasive procedures”.

A parent’s right to withhold their baby from the heel-prick-test was upheld by the Supreme Court in 2001 but the numbers who do this are very small. In her judgement Susan Denham cited Department of Health records saying only six parents a year opt-out of the service. Denham ruled that the consent of the parents is necessary before the test is carried out.

The court didn’t consider what consents were required for dealing with the samples after they were screened.

All these blood samples are put on what is known as Guthrie Cards and sent to the national newborn screening lab in the Children’s University Hospital in Temple Street in Dublin. The hospital have been carrying out the national newborn screening programme since 1966 and have identified 1,815 diseases or disorders in that time. The Irish Times did a piece recently on the sterling work the hospital has been doing to ensure babies can go on to have normal lives after their diseases are identified by the screening.

An unforeseen side-effect of the national screening programme has been the creation of a de-facto national DNA database. Unknown to the Data Protection Commissioner (DPC) and most parents the hospital’s policy is to keep all blood samples on file indefinitely.

The hospital is registered with the DPC. Its description of the records it holds includes: “Screening for metabolic disease – clinical & demographic data, name and address.” But the DPC wasn’t aware what this entailed.

Temple Street now holds 1,548,300 blood samples complete with the identifying details of each baby. There are approximately 8% more cards than the number of babies because repeat samples are received due to a variety of reasons. The samples go back to 1984 (of course!) because those taken before 1984 were destroyed after water contamination.

It’s not a DNA database as the profiles of the blood samples aren’t analysed and stored in electronic form. But if you wanted to get a DNA profile of any Irish person born since 1984 then Temple Street is the place to go. A DNA profile could be created from any of the blood samples kept on record.

In Australia police regularly seek access to baby blood samples to get DNA profiles to aid investigations – mainly missing persons cases according to this paper. I asked Temple Street whether the gardai had ever sought access to its blood sample records. Cryptically they told me that “one agency” had made a “tentative enquiry” about accessing the blood samples but didn’t follow it up. Read more…