Mentorship for -Managing Diagnostic Uncertainty: An Examination of the Interplay of Technology, Medical Knowledge, and Law in Diagnostic Practice. The Case of Epilepsy

Investigator: Vincanne Adams, PhD
Sponsor: National Science Foundation (NSF)

Location(s): United States


This is a Science and Technology Studies dissertation improvement grant. The project is a comparative, ethnographic analysis of doctors' strategies for managing competing medical and legal demands faced in diagnosis of epilepsy in contemporary American medicine. Funds from this grant will support travel to several conferences. Funds will also support equipment purchases. The researcher will examine the interplay of technology, medical knowledge, and diagnostic practice, within a medical context of high uncertainty, where doctors are not only diagnosticians, but also key players in the legal regulation of driving for people with epilepsy. Ultimately, the researcher will explore implications of diagnostic practice for patients. People diagnosed with various seizure disorders have created support and advocacy groups, which are key sites where they share medical and legal knowledge, react to their experience of diagnosis, and work to challenge legal regulation. This research takes these social groups as an important site for the generation of alternate medical knowledge about epilepsy in cases where doctor's knowledge is sometimes taken as insufficient by patients (as well as doctors themselves). The research activities will be conducted over 16 months, and will include ethnography of:
1.) a comprehensive epilepsy clinic,
2.) a patient support group (Northern California Branch of the Epilepsy Foundation of America), and
3.) several branches of the Northern California DMV Committee that makes decisions to revoke patient's driver's licenses, as well as participant-observation at a number of key scientific and medical meetings.
This study will attempt to delineate when and how uncertainty becomes problematic, when and how controversy is closed and when and how it is left open. By detailing how diagnoses are produced, this study may be used by patients to inform themselves about the diagnostic process and may contribute to improved doctor-patient communication.