CSSD working group Precision Medicine: Ethics, Politics and Culture presents Consumers, Citizens, and Crowds in the Age of Precision Medicine: a talk by Cinnamon Bloss, Ph.D (University of California, San Diego).
Precision medicine depends, in large part, on the mobilization of large numbers of people to contribute their personal genetic and other health data. With this goal in mind, several research models have emerged that use a rhetoric of democratization of science or the promise that contributors will acquire knowledge through their participation. Such models vary widely with some that treat laypeople as data providers who contribute their samples and money (e.g., direct-to-consumer genomics) and others where laypeople are viewed as research creators or collaborators who co-conduct research with professional scientists (e.g., data donation platforms). The use of these varied “biomedical citizen science” models has a number of ethical and social implications, including at the individual, healthcare system, and societal levels. Ultimately these approaches have the potential to impact public trust in science and medicine broadly, particularly as the largest biomedical citizen science study to date – the Precision Medicine Initiative’s All of Us Research Program – is now underway. This presentation will showcase a series of empirical studies that aim to both inform ethical questions raised by biomedical citizen science, as well as suggest areas for future research.