Sharing with Strangers: Governance Models for Borderless Genomic Research in a Territorial World

Kennedy Institute of Ethics Journal 29 (1):67-95 (2019)
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Abstract

Expectations are high around the world that more research on human genomic variation will improve the utility of “precision medicine” and help address population health disparities through “precision public health”. In large measure, these expectations rest on the premise that researchers will be able to share human DNA samples and genomic data freely and widely across the international scientific community. The human genomics community pioneered polices of early deposit of genomic research data into open databases to facilitate the exchange and use of data during the mapping and sequencing of the human genome in the 1990s, and the success of those policies has made a...

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