Abstract:
In New Zealand nearly all nonconsensual research studies on incapacitated adults are in effect prohibited under current laws. This article argues that the current prohibition goes too far, inevitably depriving incompetent participants as individuals and as a group of access to medications for which there is good reason to be confident may be directly beneficial to them, as well as to future patients and society. At the same time incapacitated participants are particularly vulnerable to exploitation and harm. All jurisdictions in which nonconsensual research is undertaken have to balance these competing ethical considerations. In the UK three different pieces of legislation have been enacted which permit nonconsensual research to proceed, subject to a comprehensive regime of strict protections for participants. The article analyses these and argues that an excellent model can be constructed from them. In late 2014 the Health and Disability Commissioner agreed to investigate this issue with a view to proposing law reform, but the promised public consultation has never eventuated. It must do so without further delay for the protection of participants and researchers, and in the interests of society.