Bounded Justice: Learning Health Systems and the Ethics of Scientific Knowledge Production

• In Event: The Learning Health System as a Socio-Technical System of Translation

Abstract

Based on empirical data collected on the ways in which science is co-produced for sickle cell disease (SCD) in Brazil, this presentation explores the ethical calculus of how scientific knowledge is legitimized for learning health systems. Bounded justice, as I define it, is an attempt to distribute health rights without disturbing the underlying mechanisms that generated initial inequalities. Its performance hinges on the historico-geographical context in which it is situated and can permeate any number of medical, social, and ethical realms.
Using the new U.S.-based initiative “All of Us” as a case study, I will interrogate how inclusion and knowledge production are at odds with structural barriers and how justice-based scientific and public health policies are incongruent to the very justice they are trying to produce. Faden et. al. (2013) argue for “a specific, novel obligation on health professionals and health care institutions to be active contributors to learning in health care…and that a similar obligation extends to patients, who have traditionally not been conceived in research ethics as having a duty to contribute to the ongoing learning that is integrated with the health care they receive”.
This presentation asks the questions: how can we create a collaborative system of knowledge production that acknowledges both the societal barriers imprinted on marginal stakeholders? How do we navigate the tensions between what is deemed historically legitimate by the standards of science in terms of learning in healthcare?

Author

• Melissa Creary, University of Michigan, School of Public Health