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Wednesday 24 September 2014

HSE under attack for destroying heel-prick archive

Eilish O'Regan Health Correspondent

Published 19/01/2013 | 05:00

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THE Health Service Executive (HSE) decision to destroy thousands of archived heel-prick screening cards will deny scientists the chance to carry out life-saving medical research, doctors have claimed.

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The heel-prick test is usually carried out three to five days after a baby's birth and involves taking a blood sample to screen for inherited disorders.

The screening cards dating from 1983 to 2002 are now being destroyed by the HSE and the consent of parents, guardians or next of kin is needed to save them.

The Royal College of Physicians yesterday condemned the move and said it will result in the permanent loss of an Irish population genetic database.

The decision to destroy them was taken to comply with EU Data Protection law and follows a complaint by an individual to the Data Protection Commissioner that his data (DNA) was retained by the State without his consent.

The college said: "We do not agree that the State is obliged by European law to destroy this national archive. Destruction of this priceless national asset is the easy but wrong option."

Disease

Access to the anonymised screening cards would allow for research into patterns of genetic disease.

One such investigation in 1999, using 900 of these cards, showed that the Irish population has the highest frequency of haemochromatosis – an iron storage disorder – in the world.

The HSE said that since July 2011, parents now give consent for the newborn screening cards to be stored and then disposed of during the child's 11th year.

Dr Kevin Kelleher, head of health protection said: "No explicit consent for storage was given at the time these historic tests were done, and therefore Data Protection legislation requires the HSE to not continue to store them."

Any person who prefers that their screening card is not disposed of can find further information online at www.newbornscreening.ie.

Irish Independent

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