Saving blood samples a matter of life and death

The Irish Times
Saturday 23 March 2013

Dr Muiris Houston

Q Should we be worried about the HSE proposal to destroy newborn blood samples?

Easter Sunday is rapidly approaching, and with it a deadline after which the Health Service Executive will incinerate more than 1 million blood samples taken from newborn babies. The heel-prick test, also known as the Guthrie test, is carried out on newborns to screen for genetic disease and the blood sample is then stored on a piece of absorbent card.

In 1966 Ireland became one of the first countries to implement the Guthrie test, which is used to detect Phenylkentonuria – a genetic condition that can damage the brain and nervous system – and five other diseases.

The decision to destroy the cards came after it emerged that samples taken before July 1st, 2011 were being retained without consent and therefore in breach of national and EU data protection legislation. A subsequent policy review carried out by an expert group recommended that samples more than 10 years old be destroyed unless their owners or guardians requested their return. The HSE deadline for such requests has been set for March 31st, after which all other samples from children born between 1984 and 2002 will be incinerated.

However, a survey by the Irish Heart Foundation (IHF) has found that just 12 per cent of the population was aware of the impending deadline.

Priceless Archive

The main reason we should be concerned about plans to destroy these blood spot cards is that they represent a priceless genetic archive. The DNA of every baby born in Ireland since 1984 is present in this archive. In light of the recent explosion of medical research based on genetic material, it’s likely that these samples could in the future be used to detect individual risk of specific diseases. More immediately, cardiologist and the IHF say the samples could save the lives of family members of more than 1,0o00 young people who have died from sudden cardiac death. They believe vital genetic information on the blood spot could be used to identify the gene of underlying cardiac conditions that could prevent more deaths in families of victims of sudden cardiac death.

Issues of patient consent are important and are being given primacy by the Department of Health. But data protection must not be allowed take precedence over human life.

There is a legislative solution out there. But first Minister for Health James Reilly must stop the impending destruction of the bloodspot cards.