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)
we could not discuss in 1995 was information transmission 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(More)
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