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Consent to Research - iDASH webinar

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Freshest version of the Consent to Research Project slides. For a webinar as part of the iDASH project. http://idash.ucsd.edu/

Freshest version of the Consent to Research Project slides. For a webinar as part of the iDASH project. http://idash.ucsd.edu/

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  • very interesting...i'm a member of 23andme currently. thanks
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  • control over informationhuman dignityintimacyrestricted accessharm preventionexploitationdiscrimination
  • Transcript

    • 1. consenting to research iDASH webinar 3/16/2012
    • 2. “Privacy is about context, socialsituations, and control.” - danah boyd
    • 3. We are going to get our [genetic,health] data, one way or another.
    • 4. but we often lack agency to decide what is done with data about us…
    • 5. (we are also going to talk about it)
    • 6. in the future, anyone who wants acopy of your genome will probably beable to get it.
    • 7. how do we ensure our data getsturned into knowledge?
    • 8. “technology doesn’t support patient engagement”
    • 9. Terms in blue pop up to definitions
    • 10. all boxes must be checked volunteer must click to proceed
    • 11. volunteer cannot skip video
    • 12. https://vimeo.com/37704392
    • 13. 1. understanding the choice
    • 14. you decide what data you’ll upload
    • 15. can researchers contact me (anonymously)?
    • 16. please email patient #XYZ123researcher you
    • 17. 2. understanding what happens to your data
    • 18. 3. PLC is a data gift
    • 19. no “quid pro quo”
    • 20. 1. will not re-identify you 2. will not harm you3. research will be “open”
    • 21. 4. you are consenting to risk and uncertainty.
    • 22. potential for harmeconomicsocialand more we don’t know
    • 23. links to external resourcesvolunteer must click to proceed
    • 24. volunteer must check each box definitions pop up as user examivolunteer must affirm desire to consent
    • 25. both boxes must be checked
    • 26. Public Portable Legal Sage Bionetworks Sage Bionetworks Recruitment Consent CGRE Synapse Foundation Advocacy CGRE Database Synapse Database Portable Legal Consent Individual Level De-identified 1 2 3 Data 4 Dataset 5 Hospital Researcher Foundation AdvocacyParticipants
    • 27. 12-month recruitment goal: 25,000
    • 28. to do:vendor integrationeuropean “port”“real names”vulnerable populations“bolt on” for clinical studies
    • 29. follow:@wilbankshttp://weconsent.usplay:http://consenttoresearch.us(alpha, no guarantees, constantly changing)