Doctors have expressed concern at the decision of the HSE to destroy DNA information on every baby born in Ireland between 1984 and 2002.

The Royal College of Physicians of Ireland (RCPI) has noted that the health executive is eliminating archived 'heel prick test' screening cards from that period.

With a heel prick test, a drop of blood is obtained from the heel of every newborn baby in Ireland and allowed to dry on a card, sometimes referred to as a 'Guthrie card'.

This blood spot is then used to screen for six major diseases so that the appropriate treatment can start early in the newborn baby. The diseases screened for are: phenylketonuria, cystic fibrosis, congenital hypothyroidism, classical galactosaemia, homocystinuria, and maple syrup urine disease.

The RCPI says the HSE's action will result in the permanent loss of a genetic database of the Irish population,which it says is 'a unique bio-historical archive of pre-immigration Ireland that would be of interest to scientific investigators for generations to come and that should be used to carry out life-saving medical research.'
 
According to the HSE, these screening cards will be disposed of during 2013 to comply with EU Data Protection law, unless they are requested by the person screened or their parent/guardian/next of kin.

The RCPI, however, says the basis for this decision is a complaint by a single individual to the Data Protection Commissioner that his data (DNA) was retained by the State without his consent.
 
"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," the College said.
 
It says while it would not be practical to store all of these cards indefinitely, a 'representative and statistically valid sample' from a short period in the 1980s could be retained and anonymised for future research.

"Arrangements could easily be made to store these samples appropriately with a secure authority, define a governance structure and facilitate research access through an ethics review board. Permission to retain these cards would be obtained by advertising an invitation to individuals born between the defined dates to opt out if they so wish, with no response considered as consent."

The RCPI says access to anonymised screening cards would allow for research into patterns of genetic disease in the Irish population and its susceptibility to other diseases.

One investigation in 1999, using 900 of these cards, showed that the Irish population had the highest frequency of haemochromatosis (an iron storage disorder) in the world, the College pointed out.
 
It urged the HSE to reconsider its position on the destruction of the cards.

The HSE said the 'heel prick' screening programme was updated in July 2011, and since that date all parents now give consent for the newborn screening cards to be stored and then disposed of during the child’s 11th year, 'when the need for follow up tests for that child has reduced significantly.'

"Parents whose child is having the test now give consent for the test and for the card to be stored for up to 10 years."

"The HSE has been asked to ensure that archived newborn screening cards that are more than ten years old, and date from the 1980s to 2002, are disposed of.  This is because 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 newborn screening card is not disposed of can have their card returned to them, the HSE added.