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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
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.
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assume 1,000,000 downloadsassume 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:softwarecontent
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://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.
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“in the end, all data is either
deleted or made public”
- quinn norton
shared data will be the fulcrum.
