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Kansas City Area Life Sciences Institute - keynote @ annual dinner
 

Kansas City Area Life Sciences Institute - keynote @ annual dinner

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    Kansas City Area Life Sciences Institute - keynote @ annual dinner Kansas City Area Life Sciences Institute - keynote @ annual dinner Presentation Transcript

    • KCALSI Annual Dinner Keynote @wilbanks October 1, 2013
    • 1. give me a place to stand, and a lever, and i shall move the world.
    • every age has its own lever.
    • ours is cheap data.
    • cheap data changes how we justify our opinions.
    • OPS = AB(H + BB + HBP) + TB(AB + BB + SF + HBP) / AB(AB + BB + SF + HBP)
    • 2. research data v. consumer data
    • https://www.scienceexchange.com/
    • 3. engaging a larger cohort (or, “crowdsourcing”).
    • tension between anonymity and utility.
    • “more like plutonium than gold”
    • tension between expectation and reuse.
    • our data isn’t worth much - on its own.
    • $.50 to $2.50 for SSN, birthdate, etc.
    • $5 to $15 for credit checks, health records
    • the value is in the aggregate.
    • 4. the current approach won’t cut it.
    • 33
    • 34
    • 35
    • 36
    • assume 1,000,000 downloads assume 10% false positive rate 100,000 doctor visits $1000 per biopsy
    • that’s the setup.
    • sharing by small but coherent groups can create asymmetrically valuable resources.
    • small group sharing
    • proven to work in: software content
    • let’s try a small but coherent group to share data and see if it works in science.
    • Omberg,  et  al.  Nature  Gene*cs •Analysis of: 12 Tumor types, 6 molecular profiling platforms •Focus series of: 4 papers in Nature Genetics, with 14 more to follow in other NPG journals TCGA Pan-Cancer Consortium
    • 68core projects
    • 248researchers
    • 28institutions
    • 1070datasets
    • 1723results
    • 18papers in press
    • let’s try a small but coherent group to share data and see if it works in health.
    • “eat less and exercise”
    • the experiment:
    • volunteer must click to proceed all boxes must be checked
    • http://opensnp.org/users/615
    • http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
    • “Also there is no suggestion of consanguinity in your pedigree.” http://www.ianlogan.co.uk/
    • it’s likely that we will end up with a sharing monopoly of some sort.
    • once entrenched, hard to move.
    • instinct of institution: to increment.
    • a. “just like now, but moreso”
    • b. the cartel.
    • c. an open system.
    • 77
    • “in the end, all data is either deleted or made public” - quinn norton
    • shared data will be the fulcrum.
    • thank you @wilbanks john.wilbanks@sagebase.org