KEY POINTS:
The two million newborn baby blood samples being held in storage while authorities debate their future should be opened to wider health research, under strict controls, a support group says.
The heel-prick samples, building up in indefinite storage since 1969, are credited with saving hundreds of people from severe intellectual disabilities or premature death because the screening led to early diagnosis of childhood disorders.
Privacy Commissioner Marie Schroff wants the cards transferred to a secure authority or destroyed. She is concerned that their storage beyond the screening period could allow the blood to be used for genetic screening for employment, or for criminal purposes.
But the Organisation for Rare Disorders wants the cards stored long term. "We are keen on the idea there can be long-term benefits for society as well as families by having very long term storage," executive director John Forman said yesterday.
The main use of the so-called Guthrie cards is to screen newborns for 28 metabolic disorders, including cystic fibrosis, which are treated by drugs or special diets. They can also help find the cause when a baby dies and have occasionally been used in paternity court cases and by the police to identify victims of crimes or disasters.
The cards can legally be used for wider public health research, if approved by an ethics committee, without the need to seek further consent from the parents - or the providers of the blood once they are old enough to give consent.
Britain and the US have similar screening programmes but allow research, such as testing for chemical exposure and searching for genetic variations that may be linked to sudden infant death syndrome.
Mr Forman said such research should be permitted in New Zealand - but only if there was widespread social and cross-party political support.
Loss of confidence could lead to an upsurge in parents refusing to have a sample taken from their newborns, which in turn would lead to more disabilities and deaths from metabolic disorders.
The Ministry of Health expects to make recommendations on the programme to Health Minister Tony Ryall next year.
A September report indicates it is leaning towards proposing the cards be destroyed after 16 years, although it planned to give further thought to indefinite retention, and to giving 16-year-olds the options of asking for their card to be returned, consenting to its destruction or approving its being archived.
CHECKS ON NEWBORNS
* Virtually all of the 60,000 babies born in New Zealand each year have a blood sample taken from a heel prick, following parental consent.
* The four blood spots are stored on a "Guthrie card" with the name and other identifying details of the baby.
* The blood is tested by the Auckland District Health Board laboratory for 28 metabolic disorders, including cystic fibrosis, and retained indefinitely in secure storage.
* Around 45 babies a year are affected by these disorders.
* The heel pricks began in 1969 and around two million samples are stored.
