Genomic research data: open vs. restricted access

IRB: Ethics & Human Research 32 (1):1 (2010)
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Openness is one of science’s fundamental ethical norms, but it should not take precedence over the obligation to protect the confidentiality of data. Deidentifying the data obtained from human genomic research as a condition of providing open access to research data is a strategy to promote scientific openness while protecting research participants’ confidentiality interests. However, given recent advances in methods of reidentifying individuals whose deidentified data are in genomic databases, the best way to balance scientific openness and protection of human subjects in genomic research is to permit access to genomic data on a restricted basis



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