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Last active August 29, 2015 14:10
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DNAOpenSci - How do you share and control/limit the data

How do you share and control/limit the data

How to limit the data:

  • Masking the mendelian variants / restrict access to particular region of genome
  • Aggregate the information to the population level
  • Encrypt the data to still keep the patterns but not disclose the raw data

Issues:

  • We might still get privacy concerning information from non-mendelian variants
  • Population information might not be relevant for individuals (complex genes interactions, etc)
  • Gets in the way of the research, and personalised medicine

Does privacy makes sense for genomic data?

  • Decrease in cost will make kitchen-sequencing available to anyone (sequence your girlfriend, your employee).
  • If we limit the data to a particular institute or research group, they can still leak the data
  • Even if it's illegal to sequence you without consent and then later discriminate, companies will do it privately and might not get caught (e.g., http://www.forbes.com/sites/dailymuse/2014/08/04/the-facebook-experiment-what-it-means-for-you/). We would need to verify with an independent entity that there's no discrimination for a particular variant/phenotype, like we nowadays do with gender balance.
  • Even if you don't share your data, and don't spread your DNA everywhere (ahah), your data might still be inferred from your relatives (parents, brothers). Can/should you forbid them to share?

Where to focus efforts?

  • DRM-like technologies to have "privacy" preserved in genomics?
  • Laws and policies to prevent/remedy the damage that companies/insurance/rogue individuals might try to cause by discriminating?
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