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7 March 2017

The Health and Disability Commissioner 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?

With the assistance of an expert advisory group, HDC has drafted a consultation document. The consultation document and submission form can be found at www.hdc.org.nz. The consultation document and submission form are also available in easy read format on HDC’s website.

The consultation started on 24 February 2017 and submissions will close on 30 April 2017.

The Commissioner is seeking views from all interested people, including consumers, persons interested in the welfare of people unable to consent for themselves (such as family/whānau), providers, and researchers. At the conclusion of the consultation he will review all of the submissions received and will then decide whether to recommend any changes to the current law.