Media release from health minister Tony Ryall

Cards containing the blood spots from heel prick tests on newborn babies will be kept indefinitely, with greater protections on access to the cards Health Minister Tony Ryall said today.

"The Ministry of Health is moving to enhance and protect privacy relating to the cards.

The blood spot cards are collected from every newborn as part of an important screening programme that identifies and then treats babies born with serious metabolic disorders. They have been collected since the late 1960s.  Parents can choose whether the card is retained in indefinite storage.   

"The disorders, such as cystic fibrosis and congenital hypothyroidism, are often difficult to detect early in babies without such a screening programme."

"The screening programme finds nearly one newborn a week with a metabolic disorder which can cause severe development delays or may be fatal if not detected and treated early," says Mr Ryall.

The protections around use of the cards for research, include:

·         Individual written consent is required for population research on samples collected before June 2011

·         For cards collected after June 2011, parents are informed about what the cards may be used for before they agree to long term storage

·         Any proposal for research using the cards must have ethics committee approval.

The Privacy Commissioner is considering developing a code which will regulate the use of information derived from blood spot samples, to further protect privacy.

Further information can be obtained from www.nsu.govt.nz