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Pediatric Data Sharing in Genomic Research: Attitudes and Preferences of Parents

OBJECTIVE: In the United States, data from federally funded genomics studies are stored in national databases, which may be accessible to anyone online (public release) or only to qualified researchers (restricted release). The availability of such data exposes participants to privacy risk and limit...

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Autori principali: Burstein, Matthew D., Robinson, Jill Oliver, Hilsenbeck, Susan G., McGuire, Amy L., Lau, Ching C.
Natura: Artigo
Lingua:Inglês
Pubblicazione: American Academy of Pediatrics 2014
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Accesso online:https://ncbi.nlm.nih.gov/pmc/articles/PMC3966500/
https://ncbi.nlm.nih.gov/pubmed/24616359
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1542/peds.2013-1592
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