Patient Participation and Empowerment in Precision Medicine.

Abstract

Precision medicine functions by grouping patients along genetic, molecular, and related "-omics" factors. This stratification relies on large, growing databases of patient-volunteered information. Both private companies and government bodies incentivize patients to volunteer this genetic information by appealing to the creation of collaborative "patient partnerships" and the concept of empowerment. This article addresses two related questions: (1) what is the actual nature of patient participation in precision medicine research? and (2) is this participation really that empowering for the average patient? The author contends that the nature of this participation is best conceived of as merely contributory, which falls short of collaboration. Participation in precision medicine research does not entail sharing values, equal say in decisions, or shared benefit. The author also contends that there are important caveats to claims that patient participation in precision medicine is empowering. Empowerment is hindered by the type of participation, the practical use or actionability of genetic data, genetic literacy, the cost of precision drugs for patients that qualify for them, and bioethical considerations of informed consent.