In the case of screening, individuals are not just consenting to a screening test but to the full screening pathway. Informed consent needs to be integrated throughout the screening process. This includes consent to use data for monitoring and reporting purposes and storage and possible future uses of blood spots.
The parents/guardians, on behalf of the baby:
- must be legally competent to consent
- should understand the purpose, benefits, and potential harms of participating in the NMSP
- have the right to refuse services and withdraw consent to services at any stage.
Two decisions during consent process
Practitioners must make it clear to parents/caregivers that they have two distinct decisions to make, and assist parents/caregivers to make an informed choice for both decisions.
- Whether they agree to their baby being screened for metabolic disorders.
- If they agree to screening, whether they agree to their baby's residual blood spot samples being stored for future uses; or want the residual blood spot samples returned to them after testing.
Further information about informed consent is in the 'Guidelines for practitioners providing services within the Newborn Metabolic Screening Programme in New Zealand'.