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 compare)

Data sharing is wonderful…

but, some data is sensitive

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 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.

…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?)

or to keep it private becausegenomics could lead to individual identification?

to share info for increasingthe “sample size”?

The “Sharing dilemma”

http://louiscyr.connexion-lanaudiere.ca/

Brim

silo m

ural, p

ainte

d b

y Gu

ido

van H

elten

in D

ecem

ber 2

01

5 [Im

age © B

ruce R

Mitch

ell 20

16

]Circles of trust, connected silos…

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)

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.1005772http://journals.plos.org/plosgenetics/article?id=info:doi/10.1371/journal.pgen.1005772

Avoiding the “all or nothing” approach…

THANKS!

11

And infrastructure support from the following sources:

Core organizations:

Additional sources: