Patient organisations, venture philanthropy and the ethics of pursuing cures over care.

Abstract

Patient organisations aim to advance the interests of patient populations living with various diseases, disabilities and health conditions. However, because the members of a given patient population often have varied or even conflicting interests, the way in which a patient organisation pursues its mission can be contentious, as it typically involves prioritising the interests of some patients over others. There is some evidence to suggest that in recent years, patient organisations have increasingly directed resources toward supporting research, a trend that may be spurred by the rise of venture philanthropy-an emerging model in which patient organisations make high-risk, high-reward research investments with the goal of advancing treatments and cures. While venture philanthropy has garnered significant support, it has also faced criticism from patients currently living with serious illnesses, who argue that research investments benefit future patients at the expense of services for current patients. Against the backdrop of these developments, this paper investigates the ethics of patient organisations pursuing cures over care. I begin by identifying a key assumption shared by proponents and critics of venture philanthropy, which suggests that patient organisations can permissibly choose whether they aim to benefit current or future patients. Yet I go on to argue that even if patient organisations may permissibly prioritise future patients, their promissory, stewardship and representative obligations may, under some circumstances, limit their discretion to invest in research. Under other circumstances, however, these same obligations may give patient organisations reasons to prioritise research.