The Health and Disability Commissioner (the Commissioner)'s Report(external link) proposes 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.
The HDC stated that it would conduct public consultation on the proposed changes, but not before the recommendations to strengthen the ethical review environment were put into place. These recommendations include amending NEAC’s National Ethical Standards (2019) and enacting significant changes to Ministry of Health procedures.
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. Further, while NEAC does not agree with every recommendation that the HDC made, 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.