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consenting to research     iDASH webinar       3/16/2012
“Privacy is about     context, socialsituations, 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 acopy of your genome will probably beable to get it.
how do we ensure our data getsturned into knowledge?
“technology doesn’t support    patient engagement”
Terms in blue pop up to definitions
all boxes must be checked     volunteer must click to proceed
volunteer cannot skip video
https://vimeo.com/37704392
1. understanding the choice
you decide what data you’ll upload
can researchers contact me      (anonymously)?
please               email              patient             #XYZ123researcher              you
2. understanding what happens          to your data
3. PLC is a data gift
no “quid pro quo”
1. will not re-identify you    2. will not harm you3. research will be “open”
4. you are consenting to risk and           uncertainty.
potential for harmeconomicsocialand more we don’t know
links to external resourcesvolunteer must click to proceed
volunteer must check each box            definitions pop up as user examivolunteer must affirm desire to consent
both boxes must be checked
Public          Portable Legal                     Sage Bionetworks        Sage Bionetworks       Recruitment          Con...
12-month recruitment goal: 25,000
to do:vendor integrationeuropean “port”“real names”vulnerable populations“bolt on” for clinical studies
follow:@wilbankshttp://weconsent.usplay:http://consenttoresearch.us(alpha, no guarantees, constantly changing)
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
Consent to Research - iDASH webinar
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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/

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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 of "Consent to Research - iDASH webinar "

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