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Sharing sensitive
genomic human data
Jordi Rambla
Hi! I’m
sequencing
Hi! I’m
sequencing,
too
Great!
Let’s share
and compare!
My genome is rare!
How you dare to
share! (and ...
thus, we put data under custody
EGA as an
example for
controlled access
The EGA is a resource for permanent secure
archiving and sharing of all types of p...
…well, with the right tools, safety is gone.
AMIA Jt Summits Transl Sci Proc 2016 Aug 31;2016:122-31. eCollection 2016.
On...
or to keep it private because
genomics could lead to
individual identification?
to share info for increasing
the “sample s...
Brimsilomural,paintedbyGuidovanHelteninDecember2015[Image©BruceRMitchell2016]
Circles of trust, connected silos…
the GA4GH
(a community initiative)
• File Formats (BAM, VCF…)
• APIs
• Security recommendations
• Metadata standards
• Gen...
Table 1. Data use categories and requirements (Consent Codes): definition and abbreviation.
Dyke SOM, Philippakis AA, Ramb...
Avoiding the “all or nothing” approach…
THANKS!
11
And infrastructure support from the following sources:
Core organizations:
Additional sources:
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Sharing sensitive genomic human data, by Jordi Rambla De Argila, CRG-Center for Genomic Regulation - European Genome-Phenome Archive at the CRG (8th OpenAIRE workshop)

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Presentation at the 8th OpenAIRE workshop - Panel: The Infrastructures: services and tools.

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Sharing sensitive genomic human data, by Jordi Rambla De Argila, CRG-Center for Genomic Regulation - European Genome-Phenome Archive at the CRG (8th OpenAIRE workshop)

  1. 1. Sharing sensitive genomic human data Jordi Rambla
  2. 2. Hi! I’m sequencing Hi! I’m sequencing, too Great! Let’s share and compare! My genome is rare! How you dare to share! (and compare) Data sharing is wonderful… but, some data is sensitive
  3. 3. thus, we put data under custody
  4. 4. EGA as an example for controlled access The EGA is a resource for permanent secure archiving and sharing of all types of potentially identifiable genetic and phenotypic data resulting from biomedical research projects. 4 Data is provided by research centers and health care institutions. Access is controlled by Data Access Committees. Data requesters are researchers from other research or health care institutions.
  5. 5. …well, with the right tools, safety is gone. AMIA Jt Summits Transl Sci Proc 2016 Aug 31;2016:122-31. eCollection 2016. On the privacy risks of sharing clinical proteomics data. Li S, Bandeira N, Wang X, Tang H. maybe, safety is in numbers… (what if we just share aggregated data?)
  6. 6. or to keep it private because genomics could lead to individual identification? to share info for increasing the “sample size”? The “Sharing dilemma” http://louiscyr.connexion-lanaudiere.ca/
  7. 7. Brimsilomural,paintedbyGuidovanHelteninDecember2015[Image©BruceRMitchell2016] Circles of trust, connected silos…
  8. 8. the GA4GH (a community initiative) • File Formats (BAM, VCF…) • APIs • Security recommendations • Metadata standards • Genotype to Phenotype (G2P) • Unified and “consensus” Donor Consent Agreements • PoC Projects (e.g. Beacon)
  9. 9. Table 1. Data use categories and requirements (Consent Codes): definition and abbreviation. Dyke SOM, Philippakis AA, Rambla J, Paltoo DN, Luetkemeier ES, et al. (2016) Consent Codes: Upholding Standard Data Use Conditions. PLoS Genet 12(1): e1005772. doi:10.1371/journal.pgen.1005772 http://journals.plos.org/plosgenetics/article?id=info:doi/10.1371/journal.pgen.1005772
  10. 10. Avoiding the “all or nothing” approach…
  11. 11. THANKS! 11 And infrastructure support from the following sources: Core organizations: Additional sources:

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