Newborns' blood collection report still secret

Tony Ryall
Tony Ryall
The Cabinet may soon consider a report on protocols for the national collection of droplets of newborns' blood, but its contents remain secret.

Last July, the Government decided the collection of blood cards from the 42-year-old national newborn metabolic screening programme should be kept indefinitely.

No publicity was given to that decision and last week Health Minister Tony Ryall refused to release the July Cabinet paper on the issue "as further advice is under active consideration".

Withholding the information was necessary to maintain the constitutional conventions for the time being to protect the confidentiality of advice tendered by ministers of the Crown or officials.

Also, it would maintain the effective conduct of public affairs through free and frank expression of opinions between ministers.

In a hand-written note at the end of the letter, Mr Ryall said he expected the July Cabinet paper and a new paper should be able to be released within two months.

Indications are this would be after the Government makes its decision on the protocols for the card collection.

The Otago Daily Times contends the public interest outweighs the minister's arguments regarding the July paper and has asked the Office of the Ombudsmen to review the decision.

After the Cabinet decision last year, the Ministry of Health was asked to develop operational protocols and governance arrangements for the blood-spot cards, which are used to check babies for metabolic disorders.

The decision to retain the Guthrie cards came after years of often contentious discussion, after a public consultation about the consent for and storage and use of the cards in 2007. A variety of groups and individuals have been involved in discussions behind closed doors.

Among the concerns about the collection were that many people were unaware the cards had been stored after testing; the nature of consent given; and whether samples collected for one purpose should be available for other uses, such as health research.

Health researchers were keen to see the collection kept. They supported the use of the cards for research. This is already legally possible with ethics committee approval, although to date all such requests have been turned down.

While a plethora of "stakeholder" organisations and individuals were consulted over a draft protocols document earlier this year, the ministry turned down an Otago Daily Times request for a copy of it.

An urgent complaint to the Office of the Ombudsmen about this has yet to be resolved, along with the minister's later refusal to release the submissions of people consulted over the draft protocols.

Mr Ryall has said a summary of feedback and the final policy framework would be made available on the National Screening Unit website next month.

Asked what was being done about the concerns, the ministry said it had analysed all submissions and would be responding to each one.

elspeth.mclean@odt.co.nz

 

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