September 2004
A state government-funded agency that conducts newborn screening of all babies born in Victoria has defended the privacy and security of its records, following concerns raised by two Monash academics.
The director of Genetic Health Services Victoria (GHSV), Associate Professor Agnes Bankier, who is also an honorary Associate Professor in the Department of Paediatrics at Monash, said GHSV has been pro-active in clarifying the issues relating to ownership, storage and access to the newborn screening cards.
"GHSV has, since 2001, voluntarily initiated discussions with the Department of Human Services (DHS) and the Health Services and Privacy Commissioners," she said.
An expert committee was formed last November by the Health Services Commissioner to look into the questions of informed consent, privacy, storage, access and security of the cards. That report is due to be handed to the Victorian government soon.
Professor Bankier's comments follow an earlier Monash News report in which Professor Graeme Hodge and Dr Jonathan Clough of Monash Law had expressed concern about recent media reports regarding the control of the cards that contain blood samples taken from Victorian newborns since 1970.
Every baby born in hospital in Australia undergoes a routine heel prick test, in which a small amount of blood is soaked onto an absorbent card and then tested for a range of conditions, which can be treated often before the babies get sick or develop intellectual disability.
"There are issues regarding ownership and legal protection of the blood spot that need to be addressed nationally. In the meantime the newborn screening cards are stored securely in a DHS approved off-site storage facility according to government best practice guidelines, and access is restricted," said Professor Bankier.
She said access to the records is only provided for: quality assurance associated with newborn screening; specific testing with consent of the parent or the individual for medical purposes; Hospital Ethics Committee approved research carried out on identified samples with specific consent, or anonymous samples; or forensic identification by order of a court including the Coroner’s Courts -- but only if police have first obtained a court order.
"The public can be reassured that the cards are secure and safe and have every confidence in the screening program. It should not be forgotten that the newborn screening program is vital for the welfare of the babies of Victoria," Professor Bankier said.
Robyn Anns
Contact:
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