Aaron Panofsky

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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(More)
This article provides a framework for disentangling the concept of participation, with emphasis on participation in genomic medicine. We have derived seven ‘dimensions’ of participation that are most frequently invoked in the extensive, heterogeneous literature on participation. To exemplify these dimensions, we use material from a database of 102(More)
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For much of its history, behavioral genetics, or research into the influence genetics has on human behavior, has been associated with a pessimistic view of educational reforms' potential to make much difference in improving educational outcomes or reducing inequality. Recently, however, some behavioral geneticists have begun to speak in more optimistic(More)
Participation is today central to many kinds of research and design practice in information studies and beyond. From user-generated content to crowdsourcing to peer production to fan fiction to citizen science, the concept remains both unexamined and heterogeneous in its definition. Intuitions about participation are confirmed by some examples, but(More)
IN THIS exploratory article I undertake a curious project: to compare the sociology of knowledge and the artwork of Marcel Duchamp along epistemological lines. Both the sociology of knowledge and Duchamp occupy a seemingly contradictory position of simultaneous marginality and centrality in their respective arenas. The sociology of knowledge is most(More)
mission through small non-coding RNAs. This was not recognized until the late 1990s, when the discovery of gene regulation through RNA interference and the realization that it provided a powerful research tool gave epigenetics research an enormous boost. It soon became clear that the small RNAs that mediate gene silencing can not only be transmitted to(More)
I develop ‘‘personalized social policy’’ as a speculative exercise to examine the possibility that policy makers and service providers, making decisions under conditions of uncertainty, could use genetic information to divide clients into ‘‘treatment groups’’ receiving differential service goods to better meet individual needs or achieve efficiency. Using(More)
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