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Chunk #1 — Introduction

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Genomic data-sharing: what will be our legacy?
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Various bottlenecks and rate-limiting research policies, however, are preventing medical providers and patients from realizing the full potential of PGM (Ramos and Rotimi, 2009; Ramos et al., 2012). Insufficient enrollment of ethnically diverse populations in genomic research and the use of vague racial and ethnic categories to describe research participants are examples of widespread practices that have led to knowledge gaps in PGM (Lee, 2009; Rotimi and Jorde, 2010; Ramos et al., 2013). This has extensive implications for scientists as well as patients, because knowledge of the penetrance and significance of key genetic markers will remain limited until large genomic datasets from diverse populations are developed and explored for the benefit of patients globally (Ramos et al., 2012, 2013)—causing frustration among investigators as well as clinicians who struggle to understand the clinical utility of certain genetic tests in diverse populations.