A critical ethnography of the social organization of multidisciplinary precision medicine review boards

Precision medicine uses genome data to tailor medical therapies to patients. If this individualized approach to medicine is to become the new standard of care, specialists in clinical genetics and molecular medicine must find effective ways to deliver sequencing results to treating clinicians. Members of “precision medicine review boards” determine which results should be returned to clinicians and patients and how that information should be conveyed. Little is known about how these decisions are made. Our critical ethnography of the organization and operation of one such review board explores this application of genomic medicine. From 2012 to 2014 we observed meetings of a precision medicine review board at a university medical center created as part of a research study incorporating genomic findings into clinical care for end stage cancer patients. We also analyzed documents and interviewed board members and referring physicians. The board struggled with two different – often competing – kinds of knowledge: knowledge aimed at improving patient care and knowledge intended to advance the science of genomic medicine. Board meetings, ostensibly conducted to establish best therapies, focused predominantly on the derivation of the sequencing findings. Physicians who referred patients to the study wanted less technical details and more direct advice concerning how this technology could inform patient care. Our study provides important insights about the potential causes of the imbalance between the science and practice of genomic sequencing. These insights will inform those who are creating the infrastructures necessary for incorporating precision medicine into clinical care.