Generating sociability to drive science: patient advocacy organizations and genetics research

Abstract

This paper examines how patient advocacy organizations (PAOs) representing those with rare genetic disorders drive research to their concerns. The rarity of the diseases produces a basic condition of marginalization: small numbers of widely distributed disease sufferers. The lack of promise of an eventual market makes it difficult to attract the economic and biological resources necessary for sustained research. My analysis relies mainly on 21 interviews with leaders from nine PAOs and scientists involved with them, and seeks to understand how PAOs try to attract and influence scientific research. Using a comparative framework, I find that the five main mechanisms emphasized in the literature--economic resources, social movement-style mobilization, moving early, lay expertise, and organizational controls--cannot fully explain the differences in strategies and relationships among members of my PAO sample. I propose instead to show how 'sociability'--forging close relationships with scientists and orchestrating relationships among them--enables PAOs to drive research to their concerns. I show how the strategic manipulation of sociability can give PAOs substantial influence over the research process. However, the forms of sociability that yield the greatest effects are difficult to achieve, and most forms of relationship-building offer PAOs much less influence on research.