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The project data sphere initiative: accelerating cancer research by sharing data.
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Computational resources associating diseases with genotypes, phenotypes and exposures.
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One Size Doesn't Fit All: Measuring Individual Privacy in Aggregate Genomic Data.
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Use of the National Heart, Lung, and Blood Institute Data Repository.
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Controlled Access under Review: Improving the Governance of Genomic Data Access.
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The Philadelphia Neurodevelopmental Cohort: A publicly available resource for the study of normal and abnormal brain development in youth.
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Exploring pathways to trust: a tribal perspective on data sharing.
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PhenDisco: phenotype discovery system for the database of genotypes and phenotypes.
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A mechanism for controlled access to GWAS data: experience of the GAIN Data Access Committee.
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Evolving approaches to the ethical management of genomic data.
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Research ethics. Research practice and participant preferences: the growing gulf.
Science. 2011 Jan 21;331(6015):287-8. doi: 10.1126/science.1199000.
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Glad you asked: participants' opinions of re-consent for dbGap data submission.
J Empir Res Hum Res Ethics. 2010 Sep;5(3):9-16. doi: 10.1525/jer.2010.5.3.9.
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Meeting the governance challenges of next-generation biorepository research.
Sci Transl Med. 2010 Jan 20;2(15):15cm3. doi: 10.1126/scitranslmed.3000361.
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Public opinion about the importance of privacy in biobank research.
Am J Hum Genet. 2009 Nov;85(5):643-54. doi: 10.1016/j.ajhg.2009.10.002. Epub 2009 Oct 29.
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Protecting aggregate genomic data.
Science. 2008 Oct 3;322(5898):44. doi: 10.1126/science.322.5898.44b. Epub 2008 Sep 4.
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The NCBI dbGaP database of genotypes and phenotypes.
Nat Genet. 2007 Oct;39(10):1181-6. doi: 10.1038/ng1007-1181.

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