EAGER: Narrative and the Construction of Risk and Benefit in High Stakes Contexts

Kaiser Foundation Research Institute, Oakland CA

Investigators

Abstract

This award is made under NSF's EAGER funding mechanism, which supports Early-concept Grants for Exploratory Research. The researcher will investigate how people develop new understandings of risk in very high risk/very high reward situations. The context in which this question will be investigated is clinical trials of new cancer immunotherapy drugs, which have the ability to achieve high cure rates for previously incurable and rapidly terminal disease. Because the possibility of a cure comes at the cost of serious side effects, the new immunotherapies introduce a level of uncertainty about treatment outcomes beyond what either patients or clinicians have heretofore experienced. This requires new methods of communicating about and navigating uncertainty for those who run and those who participate in clinical trials. This research will investigate the relationship between new clinical understanding of immunotherapies and how explanations of risk and efficacy are crafted, utilized, and contested in the unique cultural space of the clinical trial. Dr. Marlaine Figueroa Gray (Kaiser Permanente Washington Health Research Institute) will conduct this preliminary study by documenting and analyzing conversations in which patients are consented into trials, focusing on how uncertainty is framed by the provider and the patient. Figueroa Gray will use ethnographic methods to collect data by documenting the content of consent conversations in which providers explain benefit and risk of trial participation to patients, and will observe the clinical space in which such conversations take place. The researcher will also conduct interviews with providers who run the trials and patients who participate in them at a cancer research facility in Seattle, Washington. Findings from this research will connect biomedical and lay understandings of new immunological therapeutics to professional and lay conceptions of risk and management of uncertainty. Findings will contribute to new social science theory of how people form their understandings of extreme risk and appropriate courses of action. This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.