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Consent to Research - iDASH webinar
 

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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  • control over informationhuman dignityintimacyrestricted accessharm preventionexploitationdiscrimination

Consent to Research - iDASH webinar Consent to Research - iDASH webinar Presentation Transcript

  • 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 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
  • 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)