Right 7(4) Consultation
Consultation on health and disability research involving adult participants who are unable to provide informed consent
The effect of Right 7(4) of the Code of Health and Disability Services Consumers' Rights (the Code) is that non-consensual research involving adult participants cannot proceed unless it is in the best interests of the participants. Frequently the outcome from the research is uncertain, so it is difficult to know whether the participants will be better off participating in the research, than they would be if not participating. However, such research may provide important information of benefit to others.
In February 2017 HDC commenced a consultation regarding research with participants who are unable to give informed consent. New Zealanders were invited to contribute and give HDC their views on whether the law relating to research involving adult consumers who are unable to give consent should be kept as it is currently or changed. If people thought a change was needed, HDC wanted to know what people thought the change should look like. The consultation ran for over two months, ending on 30 April 2017.
HDC, with the assistance of an expert advisory group, is currently reviewing all the submissions received. The Commissioner will consider the submissions and decide whether to recommend any changes to the current law.
If any change to the Code is recommended, HDC will conduct further consultation on the proposed change(s).
Open Letter from Commissioner to Submitters: HDC Consultation - Acknowledgement of Submissions (PDF, 41KB)
Download HDC Consultation Document: Health and disability research involving adult participants who are unable to provide informed consent (PDF 723kb)
HDC Consultation Document: Health and disability research involving adult participants who are unable to provide informed consent (Docx 268kb)
Update 31 July 2018
157 written responses were received as a result of the public consultation. The responses were thoughtful and carefully considered.
A summary of the responses has been prepared and that summary together with the individual submissions can be accessed under 'Submissions' to the right.
HDC is currently drafting a report that sets out the Commissioner's recommendations. This website will be updated with information on the completion of the report and next steps.