Abstract

Patient-driven drug development is an emerging approach to pharmaceutical research that is forged in rare-disease communities and patient advocacy networks. Patients and their advocates increasingly engage in drug discovery and influence early-stage drug research as clinical trial participants or through compassionate-use programs. Some advocacy groups and patients also influence which therapies are developed by financing promising treatments that otherwise would not secure funding. Though some critics of patient-driven drug development worry about the ethical and scientific implications of this new approach to research, it also has several advantages over the current system. In this essay I argue that patient-driven drug development is morally permissible.