Storage and uses of leftover blood spots
When testing of the blood sample is completed, the card with the leftover blood is either stored indefinitely in secure storage by the programme, or returned at the request of the family/guardian or the individual.
Requesting return of newborn screening sample
To request that a residual newborn metabolic screening sample is returned to you, use this form: Return of newborn metabolic screening samples ('Guthrie card' or 'blood spot card') to family request form.
What can stored blood spots be used for?
Once screening is completed, stored leftover blood spots may be used for the purposes below. These uses are rare, but they can help families/whanau and the programme.
Sometimes the blood is re-tested, if the first result was unclear.
Investigating unexplained illness or death in a family and whanau
If a person dies for an unknown reason, a blood spot card can sometimes be tested to try and identify the cause. This is arranged by a doctor, with consent from family and whanau.
This may provide valuable information for families and whanau about the cause of death and can provide families and whanau with information about the risk of other family members with that disorder.
Investigating false positive and negative results
Screening is not 100 percent accurate, and can give false negative and false positive results.
A false negative result is when a screening test puts a person in the low-risk group for a disorder (negative result), but they are later found to have the disorder.
A false positive result is when a screening test puts a person in the high-risk group for a disorder (positive result), but they are later found not to have the disorder.
The Newborn Metabolic Screening Programme aims to keep screening results as accurate as possible by reducing the number of false positive and negative results. Leftover blood spot samples may be used to investigate the cause of false positive and negative results. This helps improve the accuracy of the screening.
Quality assurance monitoring and evaluation
Leftover blood spots may be used to monitor the screening programme for quality assurance purposes.
Making improvements to the screening programme
Leftover blood spots may be used to make improvements to the programme (eg, testing equipment for accuracy).
Very rarely, the New Zealand Police, usually with consent from family and whanau, request access to a specific blood spot card to identify a deceased or missing person. For instance, police may request a blood spot card to identify a body burnt in a house fire, or to identify victims of a natural disaster. Blood spots have also been used in criminal cases to identify victims.
The Ministry of Health and the New Zealand Police first signed a Memorandum of Understanding in 2006. The Memorandum was reviewed in 2013 with the framework for police requests for access to the blood spots becoming Schedule 2. signed in May 2014.
For more information see Schedule 2 below relating to the disclosure of newborn blood spot cards and related information.
The Code of Health and Disability Services Consumers’ Rights 1996 allows residual blood spots to be used for research that is approved by an ethics committee.
Residual blood spot samples stored prior to June 2011 require individual written consent if requested for population research.
For blood spot samples collected after June 2011, any applications for population research must first be approved by an ethics committee and then is reviewed by the Newborn Metabolic Screening Programme Governance Team.
By court order
Blood spot cards held by the Newborn Metabolic Screening Programme are the same as hospital records or medical files held by doctors in relation to the powers of the Court to order access or use the sample or information. In rare circumstances the Court can order access to blood spots for the purpose of testing.
Public Consultation on Newborn Blood Spot Cards: Consent, Storage and Use
The Ministry of Health consulted on new policy requirements for the Newborn Metabolic Screening Programme during February and March 2011. The Summary Report: Submissions from consultation on the Newborn Metabolic Screening Programme Policy Framework 2011 summarises the submissions received.
Research New Zealand was commissioned by the National Screening Unit (NSU) to conduct focus group discussions in order to provide an understanding of people’s perceptions and expectations about the future storage and use of newborn blood spot cards. The Newborn Metabolic Screening Programme Focus Groups Report 2007 documents the reports on the key finding from these focus group discussions.
The Newborn Metabolic Screening Programme Advisory Group Report July 2008 outlines the recommendations to the National Screening Unit for the retention period and secondary use of Guthrie (‘blood spot’) cards.