Ethical understandings of proxy decision making for research involving adults lacking capacity: A systematic review (framework synthesis) of empirical research.
Victoria ShepherdKerenza HoodMark SheehanRichard GriffithAmber JordanFiona WoodPublished in: AJOB empirical bioethics (2018)
The findings from this systematic review challenge the accepted reductionist account of proxy decision-making. Decision-making by research proxies is highly contextualized and multifactorial in nature. The choice of proxy and the relational features of decision-making play a fundamental role: both in providing the proxy's authority as decision-maker, and guiding the decision-making process. The conceptual framework describes the relationship between the framing criteria used by the proxy, and the active elements of decision-making. Further work to develop, and empirically test the proposed framework is needed.