Kansas City Area Life Sciences Institute - keynote @ annual dinner

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.

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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://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.

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“in the end, all data is either

deleted or made public”

- quinn norton

shared data will be the fulcrum.

thank you

@wilbanksjohn.wilbanks@sagebase.org