Portable Informed Consent

Post on 17-May-2015

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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

Transcript of Portable Informed Consent

1.sharing by small but coherent groups can

create asymmetrically valuable resources.

small group sharing

coherentism from:

standard legal toolscommon infrastructure

normsmetadata

(doesn’t exist for personal health data)

“Also there is no suggestion of consanguinity in your pedigree.”

http://www.ianlogan.co.uk/

2.the experiment:

let’s build a small but coherent group to

share data and see if it works in health.

PLC: “portable” legal consent

terms in blue pop up definitions

volunteer must click to proceed

all boxes must be checked

volunteer cannot skip video

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3.success will not magically increase thanks to data.

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assume 1,000,000 downloadsassume 10% false positive rate

100,000 doctor visits$1000 per biopsy

thank you

@wilbanksjohn.wilbanks@sagebase.org