Research with adults who are unable to provide informed consent
The Health and Disability Commissioner (the Commissioner)'s Report (PDF, 432 KB)(external link) proposed changes to the application of the Code of Health and Disability Services Consumers’ Rights (the Code) to health and disability research involving adult consumers who are unable to consent to their participation in the research. The changes aim to clearly state when it is legal to enrol an adult into health research without consent, the process to do so and recommendations for strengthening the ethical review environment.
In June 2020, NEAC wrote to the Associate Minister of Health about this matter to advise that NEAC strongly supports a change in the law. NEAC supports the continuation of the work that is required to change the current legal environment for research with adults who cannot provide their own consent.
NEAC outlined reasons why it considers this work is a priority for its work programme:
- unknown risks in standard of care – the evidence gap
- matters of justice
- lack of evidence to support treatment for future people.