Portable Informed Consent
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Portable Informed Consent

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Slides from the NCI DCLG meeting March 18 2013. Agenda at http://advocacy.cancer.gov/files/DCLG_Meeting_62_Public_Agenda.pdf

Slides from the NCI DCLG meeting March 18 2013. Agenda at http://advocacy.cancer.gov/files/DCLG_Meeting_62_Public_Agenda.pdf

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    Portable Informed Consent Portable Informed Consent Presentation Transcript

    • 1. sharing by small but coherent groups cancreate asymmetrically valuable resources.
    • small group sharing
    • coherentism from: standard legal toolscommon infrastructure norms metadata
    • (doesn’t exist for personal health data)
    • http://opensnp.org/users/615
    • http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
    • “Also there is no suggestion ofconsanguinity in your pedigree.”http://www.ianlogan.co.uk/
    • 2.the experiment:
    • let’s build a small but coherent group toshare data and see if it works in health.
    • PLC:“portable” legal consent
    • terms in blue pop up definitions
    • all boxes must be checked volunteer must click to proceed
    • volunteer cannot skip video
    • 21
    • 22
    • 23
    • 24
    • 3.success will not magically increase thanks to data.
    • 26
    • assume 1,000,000 downloadsassume 10% false positive rate 100,000 doctor visits $1000 per biopsy
    • thank you @wilbanksjohn.wilbanks@sagebase.org