The NIH genomic data sharing RFI — Make data-sharing plans scored within a re-identification framework

  • Tumor genetic information versus somatic and heritable genetic information. Tumor genetic information would have a much lower risk of re-identification when compared to somatic and heritable genetic information.
  • The length of the sequence with a risk for re-identification as sequence length increases. Shorter sequences will have a lower risk of re-identification than long genetic sequences
  • Rare diseases or sequences versus those more common in populations. Having additional frequency information regarding genetic mutations or baseline rates of a particular genetic sequence will be important to be able to statistically evaluate re-identification risk
  • The comprehensiveness or number of heritable sequences that can use genetic information to identify related individuals. For example, a dataset with a small or limited number of SNPs will have a lower risk of re-identification compared to a dataset with numerous or comprehensive sets of SNPs.

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Doug Fridsma is the Head of Government Partnerships at Datavant, and the former Chief Science Officer at the Office of the National Coordinator for Health IT.

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Doug Fridsma

Doug Fridsma

Doug Fridsma is the Head of Government Partnerships at Datavant, and the former Chief Science Officer at the Office of the National Coordinator for Health IT.

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