There is a risk secrecy around proposed protocols for the newborn metabolic screening programme could undermine trust in the scheme, principal investigator of the Human Genome Research Project Prof Mark Henaghan says.
Last year, the Government decided millions of cards containing droplets of blood taken from the heels of newborns would be kept indefinitely, but the decision was never publicised.
After that decision, it asked the Ministry of Health to develop operational protocols and governance arrangements for the cards.
The national screening unit has advised a report will go to the Government on this by the end of this month, but the Otago Daily Times has been denied an official copy of the draft documents, even though these have been circulated to four consumer organisations and others who have been participating in the debate.
An urgent complaint about this has been lodged with the Office of the Ombudsmen.
Asked to comment on the consultation process, Prof Henaghan said the Guthrie cards scheme, introduced in 1969 to test for metabolic disorders, had operated very much on goodwill and trust, which was "not a bad thing".
Parents had trusted the testing was being done for the good of their children.
At the moment, he felt many people were not "even aware of what the Guthrie cards are", or that they had been stored.
If changes to the management of the cards were to be proposed and all the people with a possible interest in this were not being told in advance what those changes were, "it does run the real risk of creating suspicion and unnecessary concern".
People should be "fully informed", he said.
There needed to be major discussion. Although discussions had been ongoing among a variety of groups and individuals on various issues about the cards since 2007 when there was public consultation, there had been little information widely disseminated on the issues officially.
Prof Henaghan accepted some of the questions under discussion were contentious, but that was not a reason for a lack of openness on the issues.
One of the debates has been the extent to which samples collected for one purpose should now be available for others, such as health research, when no consent had been given for that.
Until now, no approval for use of the cards by health researchers has been given, although the New Zealand code of health and disability consumers' rights makes provision for such research without extra consent required, if the research is approved by an ethics committee.
In the first volume of its research, the Human Genome Project stated in 2007 the programme must not be used as a tissue or DNA repository simply because it was the easiest way to answer a particular research question.
"There are almost always other paths that can be followed to answer the same research question," the report said.
Papers released to the Otago Daily Times under the Official Information Act two years ago by the minister of health showed there has been considerable tension behind the scenes between some health researchers and consumer organisations over consent, storage and future access to the cards.
