consenting to research

iDASH webinar

3/16/2012

“Privacy is about context, social situations, and control.”

- danah boyd

We are going to get our [genetic, health] data, one way or another.

but we often lack agency to decide what is done with data about us…

(we are also going to talk about it)

in the future, anyone who wants a copy of your genome will probably be able to get it.

how do we ensure our data gets turned into knowledge?

“technology doesn’t support patient engagement”

Terms in blue pop up to definitions

volunteer must click to proceed

all boxes must be checked

volunteer cannot skip video

https://vimeo.com/37704392

1. understanding the choice

you decide what data you’ll upload

can researchers contact me (anonymously)?

you

please email

patient #XYZ123

researcher

2. understanding what happens to your data

3. PLC is a data gift

no “quid pro quo”

1. will not re-identify you2. will not harm you

3. research will be “open”

4. you are consenting to risk and uncertainty.

potential for harmeconomicsocialand more we don’t know

links to external resources

volunteer must click to proceed

volunteer must affirm desire to consent

volunteer must check each box

definitions pop up as user examines

both boxes must be checked

Individual Level Data

De-identifiedDataset

Sage BionetworksCGRE

Portable Legal Consent

1 2 3 4 5

Participants

Researchers

CGRE Database Synapse Database

Advocacy Foundation

Hospital

Advocacy Foundation

Portable Legal Consent

Public Recruitment

Sage BionetworksSynapse

12-month recruitment goal: 25,000

to do:vendor integrationeuropean “port”“real names” vulnerable populations“bolt on” for clinical studies

follow:

@wilbankshttp://weconsent.us

play:http://consenttoresearch.us (alpha, no guarantees, constantly changing)