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Article

Secondary uses and the governance of de-identified data: lessons from the human genome diversity panel.

BMC medical ethics - 26 Sept 2011

Fullerton Stephanie M, Lee Sandra S-J

Abstract excerpt

BACKGROUND: Recent changes to regulatory guidance in the US and Europe have complicated oversight of secondary research by rendering most uses of de-identified data exempt from human subjects oversight. To identify the implications of such guidelines for harms to participants and communities, this paper explores the secondary uses of one de-identified DNA sample collection with limited oversight: the Human Genome...

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Methodology Data sources Editorial policy Privacy About Contact Helena Bioinformatics

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Identifiers

PMID: 21943371
DOI: 10.1186/1472-6939-12-16
PMCID: PMC3195203

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PubMed metadata and Literature Corpus relationships. Corpus snapshot updated 7 Sept 2026. Manifest publication-graph-cohort-2026-09-07.1.

Source receipt: pubmed, retrieved 7 Sept 2026.

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