Elements of Informed ConsentJOHN WILBANKS AND MEGAN DOERR

@WILBANKS@MEGDOERR@SAGEBIO

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Design is upstream of technology

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• Mobile or web-app highlight reel of the informed consent form (“long form”)

• Series of participant self-navigated, self-paced screens

• May include animation, video, other interactive elements

• May include summative or formative assessment

• One of three major user agreements for app-mediated research

• eConsent

• Long form

• Privacy Policy/Terms of Use

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(A little more on the “Learn more”)

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file:///var/folders/9p/bbpc5fkd6ybdzwss43hcfzsc0000gn/T/noun_dna_77921.png

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Giving sharing power to the participant

changeable by participant

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Sharing by influencing developers

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Sharing by influencing developers

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2016: AllofUs Research Program

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Another way to structure an eConsent screen

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What is the purpose of All of Us?

• To give medical advice and treatment.

• To help scientists make discoveries about health.