Adult decision-making capacity and health research in Aotearoa New Zealand

The Code of Health and Disability Services Consumers' Rights (the Code)1 and the Health and Disability Commissioner Act (the Act)2 are up for review. The Code currently applies to clinical care, teaching and research. When it was introduced, there were no national mechanisms to govern research, but since then the National Ethics Advisory Committee (NEAC) has developed detailed guidelines and established a network of ethics committees at various institutional levels. As currently written, the Code prohibits research on a patient who lacks capacity unless it is in their "best interests." This precludes some important research. The NEAC guidelines are more nuanced and measured, designed to balance the risks to the patient with the benefits to the community. We argue that the Code and the Act should be amended to allow decisions about research proposals on people who lack capacity to be made by an ethics committee set up by NEAC.