Precision medicine and distributive justice : wicked problems for democratic deliberation

"Wicked ethical problems have been generated by precision medicine due to both the wiliness of cancer and the fragmentation of health care financing in the United States. The wiliness of cancer has resulted in these targeted cancer therapies yielding only very marginal gains in life expectancy for most patients at very great cost, thereby threatening the just allocation of health care resources. As a life-threatening phenomenon, cancer is not morally special. Philosophers have high hopes for the utility of their theories of justice. However, metastatic cancer and costly precision medicines generate extremely complex problems of health care justice that none of these theories can address adequately. What is needed instead is a political conception of health care justice (following Rawls) and a fair and inclusive process of rational democratic deliberation governed by public reason. A basic assumption is that society has only limited health care resources to meet unlimited health care needs (generated by emerging medical technologies). The primary ethical and political virtue of rational democratic deliberation is that it allows citizens as citizens to fashion autonomously shared understandings of how to address fairly the complex problems of health care justice generated by precision medicine. Still, in a pluralistic world, ideally just outcomes are a moral and political impossibility. Wicked problems can metastasize if rationing decisions are made invisibly, in ways effectively hidden from those affected by those decisions. A fair and inclusive process of democratic deliberation makes wicked problems visible to public reason."