Boundaries of Responsible Knowledge: The Positive Re-valuation of Ignorance in Medicine

• In Event: Institutions and Ignorance: New Directions in the Political Economy of Science

Abstract

Dominant narratives in biomedicine suggest that health risks are best managed through the collection of health data and subsequent intervention. Medical institutions collect vast amounts of health information about their patients. But, clinical trials in many medical fields suggest that this data collection has not improved health outcomes, and may be leading to unnecessary treatment. In response to this evidence, I argue that there is a growing risk counterculture in medicine that seeks to manage health risk through intentional ignorance of health data. Based on semi-structured, in-depth interviews with American obstetricians and clinical geneticists, I explore how healthcare institutions and providers are shifting their practices and policies towards doing and knowing less. How does the positive re-valuation of ignorance compete against a big data revolution in healthcare? In American obstetrics, a growing number of providers argue against collecting data on the fetal heart rate during labor in an effort to improve maternal and fetal health outcomes. In cardiovascular genetics, many providers seek to minimize the amount of genetic data they collect in an effort to reduce the likelihood of inappropriate treatment. But these providers face a number of institutional and legal challenges. Building upon theories in the sociology of risk, knowledge, and organizations, I suggest that the boundaries of responsible knowledge are being debated and potentially redrawn. As the amount of available health data continues to grow, it is critical for STS scholars to examine how healthcare institutions and providers grapple with the value of knowledge versus non-knowledge in medicine.

Author

• Kellie Owens, University of Pennsylvania