Code of Health and Disability Services Consumers’ Rights

The Code of Health and Disability Services Consumers’ Rights provides that New Zealand healthcare consumers have a legal right to appropriate information to enable them to give informed consent.  Information about the Code can be viewed at http://www.hdc.org.nz/.

Offering newborn metabolic screening is an integral part of an LMC’s antenatal and postnatal care, and obtaining informed consent for participation in the NMSP is central to good practice. 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, and include consent to use data for monitoring and reporting purposes and storage and possible future uses of blood spots as well as sampling.

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.

For participation in the NMSP, parents/guardians have two decisions to make:

• whether they agree to their baby being screened for metabolic disorders
• if they agree to screening, whether they:
  • agree to their baby's blood spots being stored for future uses; or
  • want the blood spots returned after testing.

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. 

Health Information Privacy Code

The Health Information Privacy Code 1994 (HIPC) sets specific rules for agencies in the health sector to better ensure the protection of individual privacy, addressing health information collected, used, held, and disclosed by health agencies.  For the health sector the HIPC takes the place of the information privacy principles in the Privacy Act 1993.  The HIPC can be viewed at http://www.privacy.org.nz/.