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

摘要: 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 marginalization: small numbers widely distributed disease sufferers. lack promise an eventual market makes it difficult attract economic and biological resources necessary for sustained research. My analysis relies mainly on 21 interviews leaders from nine PAOs scientists involved them, seeks understand try influence scientific Using comparative framework, I find that five main mechanisms emphasized in literature--economic resources, social movement-style mobilization, moving early, lay expertise, organizational controls--cannot fully explain differences strategies relationships among members my PAO sample. propose instead show 'sociability'--forging close orchestrating them--enables strategic manipulation sociability can give substantial over process. However, forms yield greatest effects are achieve, most relationship-building offer much less