Cinnamon Bloss, 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.
This event is free and open to the public; for more details, visit the website.
Cinnamon Bloss is an Associate Professor in the Departments of Psychiatry (primary) and Family Medicine and Public Health (secondary), Division of Health Policy at the University of California, San Diego. Dr. Bloss has an adjunct appointment as a Policy Analyst at the J. Craig Venter Institute and is a licensed clinical psychologist. Dr. Bloss’ current research focuses on the individual and societal impacts of emerging biomedical technologies. Dr. Bloss’ background is in clinical psychology, statistical genetics, genomic medicine, biomedical ethics, and health policy. Dr. Bloss has conducted both candidate gene and genome-wide association studies of neurocognitive phenotypes, as well as empirical work on biomedical ethics topics in the area of genetic testing, genome sequencing, and wireless sensors. Dr. Bloss has been a Co-Investigator on several previously funded NIH grants and has published over 60 papers and mentored over 30 students, ranging in level from high school to post-doctoral fellow.
This event is sponsored by The Precision Medicine: Ethics, Politics, and Culture Project (co-directed by Rachel Adams, PhD, Professor of English; and Maya Sabatello, LLB, PhD, Assistant Professor of Clinical Bioethics).