The Otago Daily Times sought a review of the process on the grounds the lack of information readily available to the public throughout the review of the consent, storage and use of the cards made the process unreasonable.
In a covering letter with his decision, ombudsman Dr David McGee said while the process could clearly have been improved, it was less clear whether it was so defective as to be ''unreasonable'' in Ombudsmen Act terms.
The cards, sometimes known as Guthrie cards, contain blood spots collected from babies under the newborn metabolic screening programme since 1969 to diagnose more than 20 metabolic conditions.
Concern from then privacy commissioner Bruce Slane about the lack of proper rules around consent, retention and access to the samples led to a public consultation on these issues in 2007.
Following this, there were some workshops held behind closed doors involving ''stakeholder'' groups.
Documents released later under the Official Information Act showed there was considerable debate among those who took part, with one of the contentious issues whether the samples should be retained indefinitely.
Among concerns was the general lack of awareness among members of the public the samples had been kept.
In July 2010, the Cabinet decided the cards should be retained indefinitely, but that decision was not made public at the time .
Dr McGee said he was advised that as the draft policy framework for the storage, use and governance of the cards had yet to be developed and approved, ''more questions would be raised by the public than could be answered at that stage''.
Requests by the ODT for subsequent consultation documents on the framework and protocols sent to selected groups were initially refused by the Ministry of Health and Health Minister Tony Ryall did the same over the 2010 Cabinet paper.
While these documents were eventually released after all decisions on the card collection had been made, Dr McGee found last year that none of the grounds for refusal was valid.
In his latest decision, Dr McGee said under the Ombudsmen Act, he did not have the jurisdiction to examine decisions made by ministers, so must ''tread carefully''.
''However, it seems to me desirable that any steps to be taken by the ministry would be reported openly to the public throughout the entire period. I cannot see that either the ministry or, later, the Cabinet would have been compromised in their consideration of the other issues arising in the development of the governance framework had the public been aware of the directions being taken.''
While he considered it reasonable not to involve the public during the drafting of the framework, it was desirable to keep the public informed of the process.
''Having asked for and received feedback from the public since early 2007 those groups and individuals participating at the initial stages would have been interested (one might almost say entitled) to know about the ministry's intentions following the consultation process.''
The ODT had argued that the low level of response to the initial consultation made further engagement with the public important both to increase awareness and provide further views.
He found the ministry did not err by not inviting the wider public to participate in the drafting of the protocols and governance arrangements, but it could have publicised the steps it was taking from November 2009 to September 2011 (the date when decisions on the programme were officially announced).
Blood spot cards
• Stored blood spot cards in newborn metabolic screening programmeAny blood left over after screening may be used. -For repeat testing, if needed.
• To make improvements to the screening programme.
• To investigate unexplained illness or death in a family/whanau.
• For forensic use (identifying a dead or missing person or assisting with inquiries such as identifying victims of a natural disaster or crime). This is governed by a memorandum of understanding with the New Zealand police.
• For research approved by an ethics committee. To date, blood spot cards have not been used for large-scale population studies.
• Population research on blood spot cards must. -Have ethics committee approval.
• Ministry of Health approval.
• Be presented to the newborn metabolic screening programme's governance team.
• Not use up all the blood on an individual's card.
• Be considered an appropriate use of residual blood spot samples and contribute to the public good through increased scientific knowledge.
• If researchers want to use cards collected before June 2011 they must also have individuals' written consent.
*Parents/guardians can request return of children's cards at any time and anyone 16 or older can ask for their own.
