25 years worth of Irish baby DNA

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.

The hospital wouldn't say who made the enquiry (I don't think it was the gardai) or when it was made but said its policy on patient confidentiality would mean it wouldn't allow access.

There is still concern among parents I've spoken to about what the hospital does with the samples and who can access them. Four groups of researchers from other hospitals and a university have been allowed to access the blood samples on an anonymised basis - all approved by the hospital's ethics committee.

A colleague in The Sunday Times thinks this DNA file should be made available to gardai straight away. "Imagine how useful it would be and sure if you've done nothing wrong you've nothing to worry about," he says. Obviously for many reasons this isn't going to happen!

A collection of a substantial part of the nation's DNA is a hugely sensitive and valuable resource. Temple Street hospital has a responsibility to keep those records secure so it's concerning that the hospital had a major security breach in 2007 which was unreported (until now).

The storage of baby DNA has become a hot topic in America recently. Last month in Texas a civil rights group won a court case against the state which has now agreed to destroy 5 million samples taken without consent.

The issue here is about informed consent too. It is the HSE's responsibility to collect these samples but it seems to have ignored data protection law and failed to ask parents for consent to hold on to the blood samples. There was definitely no permission given to use the samples for further research although I'm sure most parents would be glad to agree to this if it improves the screening programme.

According to the HSE's 2004 review of the newborn screening programme: "Implied consent is the accepted practice in the majority of hospitals" and that's only referring to taking the blood sample. No mention of asking permission to store the samples. The lack of asking permission to keep the records seems to have irked some parents the most.

More than one person has remarked to me that it's "strange" that Temple Street's policy on amassing this extensive collection of blood samples wasn't highlighted by the organ retention reviews of hospitals in recent years.

The Department of Health, the HSE, the hospital and the DPC are all meeting tomorrow (Wednesday January 13th) to discuss what to do with these records now we've highlighted the issue. Not too many other media seem interested in this yet but it should be interesting to see what comes out of that conflab.