Medical Information Commons

Abstract

In this paper, we develop the concept of a medical information commons, laying out its central features and exploring connections to several strands of commons theory. We then hone in on normative questions raised by efforts to create widely-shared informational resources in the biomedical research space. Addressing these questions involves examination of the claims of key stakeholders and excavation of the moral foundations of governance mechanisms. We believe this analysis yields several important lessons for leaders of current efforts. First, they should consider investing resources in empirical studies to inform evaluation of the trade-offs associated with alternative strategies for involving participants. Second, there is intrinsic as well as instrumental value to the engagement of all stakeholders on terms that approximate as closely as possible norms of mutual regard and equal respect, a standard that is demanding but also flexible. Third (and related), consistent with principles of adaptive governance, nesting, and institutional variety, differences of approach across efforts should be expected and are indeed desirable. Finally, while it is possible to combine insights from the public domain and common-pool resource strands of commons theory, there are tensions between the two approaches. The rhetoric of “broad sharing” and “openness” may obscure the need to make difficult decisions about the boundaries of a commons, allocation of resultant benefits and burdens, and enforcement of rules.

Keywords: commons theory, biomedical research, ethics