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What does it mean to be identifiable? Export

The American journal of bioethics : AJOB, Vol. 8, No. 10. (October 2008), pp. 7-8.

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anonymized-research genetic-information genetic-research privacy

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[Excerpt:] These commentaries helpfully draw attention to several related developments that have emerged since our manuscript was submitted: the passage of the Genetic Non-Discrimination Act (GINA) of 2008 (HR 493, Genetic Information Nondiscrimination Act of 2008) and the findings of David Craig and his colleagues regarding the identifiability of individual SNP profiles (Nils et al. 2008) and corresponding policy changes for NIH-funded Genome-Wide Association Studies (National Institutes of Health 2008). Both GINA and Craig point to an emerging realization that genetic sequence information is even more uniquely identifiable than was previously assumed. McGuire and Greenbaum et al. each raise compelling reasons to be skeptical of the de-identifiability of genomic information. We particularly appreciate their acknowledgement of our data as supplementing these other reasons to be critical of the identifiability/non-identifiability regulatory distinction and resulting contradictory policies.


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