Blood sample store subject of debate

The Government decided last year millions of cards containing droplets of newborns' blood will be stored indefinitely, but the decision was never publicised.

The decision followed years of often contentious discussion, mostly behind closed doors, about the storage, consent and use of the cards, known as Guthrie cards.

Discussion of the storage question explored whether the cards from the national newborn metabolic screening programme should be stored for a certain or indefinite time, or destroyed.

Also hotly debated have been a variety of aspects of informed consent and whether samples collected for one purpose should be available for other uses, such as health research, and what protocols should surround that.

To date, requests for research using the residual blood spots (after the screening testing has taken place) have been turned down.

However, guidelines for practitioners involved with the programme published in February last year, point out that under the New Zealand code of health and disability consumers rights they could be used "without further consent from parent/guardians or individuals for research approved by an ethics committee".

Following last year's decision to retain the cards, the Government asked the Ministry of Health to develop operational protocols and governance arrangements for the cards, national screening unit antenatal and newborn screening manager Jane McEntee told the Otago Daily Times.

The ministry had consulted "stakeholder organisations" on these protocols for the $2.3 million-a-year newborn metabolic screening programme and would be reporting back to the Government by the end of this month, she said in an email response to questions.

The protocols would be released publicly once Cabinet endorsed them, she said.

The Otago Daily Times has complained to the Ombudsmen's office about the ministry turning down a request for the draft protocols.

The consumer organisations consulted on the draft were the Women's Health Action Trust, the Maternity Services Consumer Council, the Federation of Women's Health Councils Aotearoa and the Organisation for Rare Disorders.

Information on the national screening unit website does not contain any mention of the decision about indefinite storage or the fact the protocols are under consideration.

A recently produced guide for parents says the samples are either "securely stored or returned to you" and explains how to seek the return of cards, if that is the wish of parents.

Many people may be unaware that the blood spots, taken from the heels of recently born babies and now used to test for more than 20 rare metabolic disorders, have been stored since nationwide testing began in 1969.

Each year, about 45 babies are found, through the programme, to have one of the disorders.