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Guthrie Heel Prick report - media release
I conducted an inquiry into the collection, retention, use and release of newborn metabolic screening test samples, often referred to as the “Guthrie test”. A heel prick blood sample is taken from babies shortly after birth and the sample is tested for seven genetic metabolic disorders.
The samples and test results are stored at the National Testing Centre at Auckland Hospital.
Almost 100% of babies born in New Zealand are tested in this programme and the newborn screening samples are retained indefinitely.
I was concerned to see if there appeared to be any changes which ought to be made in the law, in information supplied to parents, or in the retention of the samples. I also wanted to consider the implications of the use and release of the samples in court cases.
It is fortunate that the testing centre has been well managed.
However, no specific law covers the operation of the programme, or the retention of the samples. As a consequence, there is no adequate legal protection for the samples against access by third parties or against future uses.
I recommend:
1. That the Ministry of Health allocate clear responsibility and authority for the operation of the newborn metabolic screening programme.
2. That the body appointed move urgently to develop clear rules for retention of the samples and any further use or third party access to those samples, consulting widely with stakeholders and with the Privacy Commissioner.
3. That these rules, and any permission-granting structures they involve, be incorporated in legislation in such a way that they are clear, robust and enforceable.
B H Slane
Privacy Commissioner
View the Guthrie test report.