Future management of millions of cards containing newborns' blood droplets has been spelled out after four years of sometimes contentious discussion.
The policy on the national newborn metabolic screening programme, to be released today, shows compromises have been made on some of the controversial issues surrounding the 42-year-old scheme.
The policy announcement follows the Government's decision last year, which was not publicised, to store the cards indefinitely rather than destroy them or keep them for a limited time.
Researchers have won the argument over the type of informed consent to be given by parents. It will be verbal, not written as some consumer groups sought.
Parents will have the chance to decide whether they want cards stored indefinitely or returned after initial testing.
The possible use of the cards for research has been one of the keenly debated issues, mostly behind the scenes, since public consultation began the debate in 2007.
Some argued it was unethical that samples collected for one purpose be used for others and sought destruction of the "unconsented" collection, while others considered, with appropriate rules, extra use of the cards could be supported.
Under the new policy, controls on the use of cards collected before June this year are tighter than some researchers might have wanted.
Population researchers wanting to use blood on cards collected before June will need to have individuals' written consent and ethics committee approval before their requests will be considered by the programme's governance team.
Any proposal using blood collected after June must first be approved by an ethics committee and that will then be reviewed by the programme's governance team. Written permission from the Ministry of Health is also required for any research projects.
Since 1969, most babies in New Zealand have had blood tests which screen for more than 20 rare metabolic disorders.
What many people do not realise is that the cards, after being tested for these conditions, have been retained in storage in Auckland. Until now, no consent had been given for this, although people could ask for their cards to be returned.
To date, requests from researchers wanting to use residual blood left after testing have been turned down. At the moment, the national screening unit does not have any research proposals before it.
Under the new policy, collection of the blood for testing for specific metabolic disorders is listed as the primary purpose of the programme, but secondary uses are also listed, including research.
Stored blood samples cannot be used to identify criminals unless there is a court order, something which has never occurred in the history of the programme. (The Ministry of Health and police have had a memorandum of understanding allowing the cards to be used for identifying dead or missing victims of disasters or crimes, under certain conditions.)
Asked what attempt there would be to inform people ignorant of the fact their cards had been stored, a national screening unit spokeswoman said, as part of its ongoing education, the unit communicated key messages about the programme to various organisations and practitioners.
This could include articles in parenting magazines and professional or-ganisation news-letters.
Up-to-date information would be published on the unit website and web links sent out widely to consumer, professional and health provider organisations.
There will be a governance team for the screening programme, which will include representatives from a variety of organisations, others who have expertise in newborn screening and some members of the programme's advisory group.
Once membership of the group was settled that information would be on the NSU website, the spokeswoman said.
• Complaints by the Otago Daily Times to the Office of the Ombudsmen over refusals by the Minister of Health, Tony Ryall, to release the draft protocols documents for the programme and the Cabinet paper informing last year's decision on the indefinite storage of the cards are yet to be resolved.
