Consent to research
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consent to research
designed by: john wilbanks
sponsored by:Sage Bionetworks
Kauffman FoundationLybba
pro bono counsel provided by:dan vorhaus (
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traditionalstudy
institution
“normal” home of research study- university- medical center
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traditionalstudy
institution
novelinstitutions
emerging home of research study- may invest at university- may invest in novel studies (including mobile, company, ???)
“normal” home of research study- university- medical center
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traditionalstudy
institution
- forming nodes, but not networks.- unlikely to achieve integration.
novelinstitutions
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traditionalstudy
institution
traditionalstudy
institution
traditionalstudy
institution
traditionalstudy
institution
traditionalstudy
institution
traditionalstudy
institution
traditionalstudy
institution
novelinstitutions
novelinstitutions
novelinstitutions
novelinstitutions
novelinstitutions
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privacy aggregator
privacymarketplace
- privacy intermediaries to facilitate private access- empower granular access to private information- focused on HIPAA sensitive data
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what‘s missing?
public access to information needed to build models of disease.
the role of research in the system - of individuals who want their data used to generate new knowledge
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what do we propose to build?
standards that allow for open and extensible communication across all four classes of entities.
1. the creation of “public genomic records” that are individual, but not identified.
2. consent systems and user interfaces that allow those public genomic records to move from place to place
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what do we propose to build?
standards that allow for open and extensible communication across all four classes of entities.
1. the creation of “public genomic records” that are individual, but not identified.
2. consent systems and user interfaces that allow those public genomic records to move from place to place
Sage Bionetworks
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what do we propose to build?
standards that allow for open and extensible communication across all four classes of entities.
1. the creation of “public genomic records” that are individual, but not identified.
2. consent systems and user interfaces that allow those public genomic records to move from place to place
Consent to Research
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“approve once, research many times”
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sage bionetworks “public genomic records”
“static” genomic
data
full genome sequencegenome variation (i.e. 23andme)
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sage bionetworks “public genomic records”
“dynamic” genomic
data
DNA expressionRNA expressionmethylation“the new new machine”
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sage bionetworks “public genomic records”
“observational”data
phenotypic disease response“ambient” data (smartphones etc)
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sage bionetworks “public genomic records”
“static” genomic
data
“dynamic” genomic
data
“observational”data
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sage bionetworks “public genomic records”
“static” genomic
data
“dynamic” genomic
data
“observational”data
requires “informed consent” to share.
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old school consent
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new school consent
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new school consent
(has a real legal tool underneath)
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coming in 2012.
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want to learn more?
follow @wilbanksfollow @sagebio
http://del-fi.org/consenthttp://sagebase.org/commons