Newborn blood spot cards have been kept and stored on an indefinite basis since the Newborn Metabolic Screening Programme (NMSP) commenced in the late 1960s. The NMSP and the National Testing Centre Advisory Group (a group in existence prior to the National Screening Unit (NSU) taking responsibility for the programme) have reviewed the retention period several times in the last 15 years, and the decision has always been to continue to retain the cards indefinitely. Families can request their children’s Guthrie cards to be returned to them at any time.

One example of access to a newborn blood spot card was the High Court case of H v G (1999), where the Court ordered the release of a residual newborn blood spot card for a dead child to determine the child’s paternity. This led to investigations into the consent and storage of the cards by both the Privacy Commissioner and the Health and Disability Commissioner.

The then Privacy Commissioner made the following recommendations in his 2003 report:

• that the Ministry of Health allocate clear responsibility and authority for the operation of the newborn metabolic screening programme
• that the body appointed move urgently to develop clear rules for retention of the samples and any further use or third party access to those samples, consulting widely with stakeholders and with the Privacy Commissioner
• that these rules, and any permission-granting structures they involve, be incorporated in legislation in such a way that they are clear, robust and enforceable.

In response to these recommendations, the Ministry of Health appointed responsibility for the funding, monitoring and strategic direction of the NMSP to the NSU in 2005. Since this time the NSU has consulted with the public on consent, storage and use of the cards, and the wider focus of the programme.

A report on policy recommendations for the MoH Executive Leadership Team will be delivered in February 2009 after which the Minister of Health will then make a decision about the future policy of the consent, storage and use of blood spot cards.

The following key public discussion documents have informed the consultation process:

The NSU consulted with the public in 2007. Below are the two reports.

Newborn Blood Spot Cards Consent Storage and Use – Public Consultation 1 2007 

Newborn Metabolic Screening Programme Focus Groups Report 2007

In response to the public consultation reports, the NMSP Advisory Group provided a report to the NSU.

NMSP Advisory Group Report July 2008

The NSU provided documentation to attendees at a stakeholder workshop in August 2008.

NSU Workshop August 2008

Following the workshop in August 2008, the NSU provided a draft policy report to the second stakeholder workshop in September 2008.

Draft Policy Options on the Secondary use and Rentention of NMSP Blood Spot Cards Sept 2008

The following document provides a summary of the submissions from the Sept 2008 workshop

Summary of Submissions Post Sept 2008 Workshop