The Health and Disability Commissioner (HDC) is undertaking a public consultation about health and disability research involving adult participants who are unable to provide informed consent to participate in the research.
The effect of Right 7(4) of the Code of Health and Disability Service Consumers’ Rights (the Code) is that research with participants who cannot give informed consent cannot proceed unless the research is in the best interests of the participants. Recently, it has been argued that New Zealand’s laws regarding non-consensual research are too restrictive, and prohibit studies that could lead to significant improvements in health and disability services.
To help the Commissioner determine whether there is a need to change the Code, he has decided to undertake a consultation, during which members of the public will be invited to comment. 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? People will be asked to consider what factors or criteria they think should be taken into account when considering whether adults who are unable to provide informed consent should be research subjects and who should be the decision maker(s).
With the assistance of an expert advisory group, HDC has drafted a consultation document. The consultation document and submission can be read here
The consultation commenced on Friday 24 February 2017 and submissions will close on Sunday 30 April 2017.