Health and disability research involving adult participants who are unable to provide informed consent
The right to make an informed choice and give informed consent before receiving health or disability services, including participating in research, is the cornerstone of New Zealand’s Code of Health and Disability Services Consumers’ Rights (the Code). The maxim “nothing about us without us” is an essential part of the culture of New Zealand’s health and disability sector.
In some circumstances it is appropriate and lawful to provide health or disability services to a consumer without consent. An example is the provision of emergency life-saving treatment to an unconscious patient. However, it is more complex to decide whether it is appropriate to include a person who cannot give consent to be a subject of research. At present in New Zealand, research on a person who is unable to give consent can take place only if participation in the research is in that person’s best interests.
Currently, non-consensual research that is not intended to provide a benefit to an individual participant but nevertheless may provide important information of benefit to others cannot proceed because it does not meet the standard of being in the participant’s best interests.
This consultation will focus on two fundamental questions: are New Zealand’s current laws regarding non‑consensual research appropriate and, if not, how should they be amended? Please note that this consultation is limited to research involving adult consumers.
You do not need to answer all of the questions for your responses to be considered by the Commissioner.