The NIH RFI on genomic data sharing — Protecting genomic data

Questions/answers regarding the NIH RFI on genomic data sharing

Can genomic information just be redacted to protect an individual’s privacy?

Can we use the safe harbor process to de-identify genomic data?

What is expert determination, and how can we improve the process?

What factors should be considered when using expert determination for genomic information?

  • whether the sequence is from a tumor or somatic cell line with tumor sequences at a lower risk for re-identification than inheritable or somatic cell lines
  • the frequency of specific mutations with rare or low frequency mutation at a higher risk for re-identification
  • the length of the sequence with shorter sequences at a lower risk for re-identification
  • the comprehensiveness of the dataset with more comprehensive information about an individual at higher risk for re-identification.

Does HIPAA prevent sharing of genomic information based on potential risk for relatives?

Are there other ways to protect privacy and link together genomic data for analysis?

Can restricted enclaves or repositories help to protect patient information?

Is there any recent experience in using PPRL techniques to link data together while protecting a patient’s privacy?

How do we create a process that continually improves the way in which we protect (and share) genomic data?

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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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