The planned destruction in some three weeks of more than one million blood samples from newborn babies is causing concern among medical specialists and to the patient advocacy group, the Irish Heart Foundation (IHF). The heel prick test, also known as the Guthrie or blood spot test, is carried out on newborns to screen for six genetic diseases and the blood sample is then stored on a card.
The decision to destroy the cards came after it emerged that samples taken before July 1st 2011 are being retained without consent and therefore in breach of national and EU data protection legislation. A subsequent policy review conducted by an expert group recommended samples more than 10 years old be destroyed unless their owners or guardians request their return. The HSE deadline for such requests has been set for Easter Sunday, after which all other samples from children born between 1984 and 2002 will be incinerated.
Cardiologists and the IHF argue the samples could save the lives of family members of more than 1,000 young people who have died from sudden cardiac death. Experts believe vital genetic information on the blood spot could be used in the future to identify the gene of underlying cardiac conditions that could prevent more deaths in families of victims of sudden cardiac death.
While issues of patient consent are important, and are being given primacy by the Department of Health in this case, the medical director of the IHF, Dr Angie Brown has said data protection must not take precedence over human life. In addition, the IHF claims the issue of genetic diagnosis in cardiac conditions was not addressed by the policy review carried out by the Health Service Executive.
The forthcoming Human Tissue Bill represents an opportunity to resolve the impasse. In the meantime, Minister for Health James Reilly should instruct the HSE to halt the irreversible destruction of the blood spot cards so that a legislative solution to the problem can be found.