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Research, the Cloud, and the IRB


                                          PRIM&R Workshop
                                           December 3, 2011

                                           Michael Zimmer, PhD
              Assistant Professor, School of Information Studies
             Co-Director, Center for Information Policy Research
                             University of Wisconsin-Milwaukee

                                         zimmerm@uwm.edu
                                       www.michaelzimmer.org
Agenda
 What is Cloud Computing
 Opportunities for Use in Research
 Ethical Dimensions
   Subject confidentiality & anonymity
   Data privacy & security
   Data ownership & stewardship
   Research integrity & authorship

 What can Researchers and IRBs do?
 What do Researchers and IRBs need?
What is Cloud Computing?




KEXINO (CC BY-NC-ND 2.0) http://www.flickr.com/photos/kexino/4202662815/
What is Cloud Computing?
 On-demand, network-based access to
  computing recourses
 Location independent, flexible, scalable, cost
  effective, little (if any) local support or
  maintenance
 As of September 2008, 69 percent of Americans
  were using webmail services, storing data
  online, or otherwise using software
  programs, such as word processing
  applications, whose functionality is located on
  the web.
3 Layers of Cloud Computing




http://en.wikipedia.org/wiki/File:Cloud_computing.svg (CC BY-SA 3.0)
Application Layer
 “Software as a service”

 Providing productivity applications via the
  Web; no local software needed
Platform Layer
 “Platform as a service”

 Providing application development platforms
  and operating systems via the Web
 Can deploy applications without needing
  your own infrastructure
Infrastructure Layer
 “Infrastructure as a service”

 Provide computing infrastructure on demand

 Outsourcing servers, storage, network
  equipment, processing power, data centers
3 Layers of Cloud Computing




http://en.wikipedia.org/wiki/File:Cloud_computing.svg (CC BY-SA 3.0)
Research Opportunities for Cloud
                             Computing
 Application layer
   Most common and easiest application of cloud
   Data gathering, storage, collaboration

 Platform layer
   Hosted apps for recruitment & surveys

 Infrastructure layer
   Access to increased processing power for large-
     scale research projects
   Some non-traditional uses
Research Opportunities: Applications
 Data gathering using web-based survey
  applications
   SurveyMonkey
   Zoomerang
   Qualtrics

 Typically used “in the wild”, sometimes
  institutionally-bound
Research Opportunities: Applications
 Data storage & sharing using cloud-based
  applications
   Dropbox
   Box.net
   iCloud

 Communication & collaboration using cloud-
  based applications
   Gmail, IM, Skype
   Google Docs, Office Live
   Wikis
Research Opportunities: Platforms
 With skilled programmers, can build custom
  apps to deploy via cloud-based platforms
   Subject recruitment and screening apps on
    Facebook
   Building and deploying test instruments within
    online gaming platforms
   Monitoring and activity tracking apps on mobile
    device platforms
Research Opportunities: Infrastructure
 Leverage cloud-based computing
  infrastructures to handle resource-intensive
  processing tasks
   Clinical trial data storage & processing
   Sharing extremely large databases

 Innovative, non-traditional use of cloud-
  based processing “resources”
   ____@Home (distributed computing)
   FoldIt
   Amazon Mechanical Turk
FoldIt
FoldIt
 Web-based puzzle video game to assist with
  protein folding research
 Leverage millions of gamers to assist in data
  processing
 Players produced an accurate 3D model of
  and AIDS-related enzyme in just ten days
   Researchers had been trying for 15 years
Amazon Mechanical Turk
 Facilitates outsourcing of computational or
  other mundane tasks
 Requesters post “Human Intelligence Tasks”
  offering minimal fees
 Workers select tasks to complete for
  micropayments
Research, the Cloud, and the IRB
Ethical Dimensions
 Subject confidentiality & anonymity

 Data privacy & security

 Data ownership & stewardship

 Research integrity & authorship
Subject Confidentiality & Anonymity
 When recruiting subjects or collecting data
  with cloud-based applications…
   Are IP addresses logged in such a way to allow
    re-identification of subjects
   Using a Facebook app might provide researchers
    access to unnecessary personal information
   Are cloud providers tracking data and usage
    themselves? Delivering ads?
Data Privacy & Security
 Critical concern of any cloud system, takes on
  even more importance when dealing with
  subject data
   Are cloud-based communication and
    collaboration systems using SSL encryption?
   Is data stored on cloud-servers encrypted?
   What is service’s policy regarding 3rd party access
     Advertisers
     Investigative inquiry vs. subpoena vs. warrants?
     Electronic Communication Privacy Act (ECPA)
Data Ownership & Stewardship
 Who owns, and who controls (meta)data in
  the cloud?
   Are you granting the cloud provider any license to
    use your data or activities (for advertising, data
    mining, etc)?
   Can you ensure data remains in the U.S.?
   Can data be destroyed on demand, including
    backups?
   Can you ensure cloud provider won’t hold your
    data “hostage”, or disappear?
Research Integrity & Authorship
 Should researchers rely on cloud-based data
  processing and analysis?
   Must trust (audit?) external/collaborative
    processing platforms
   Ethical to use Mechanical Turk, or otherwise
    outsource mundane tasks?
   Authorship claims?
What can Researchers & IRBs do?
 Read and understand the Terms of Service
   Incorporate in risk analysis

 Include mention of cloud-based services in
  consent forms
   Level of detail?

 Monitor cloud services over life of project
   Have terms or practices changed?

 All this is new, complex, and difficult…
What do Researchers & IRBs need?
 Training in interpreting ToS

 Tools to help make translation between
  federal regulations and ToS, and evaluate
  protocols
 What else?

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Research, the Cloud, and the IRB

  • 1.  Research, the Cloud, and the IRB PRIM&R Workshop December 3, 2011 Michael Zimmer, PhD Assistant Professor, School of Information Studies Co-Director, Center for Information Policy Research University of Wisconsin-Milwaukee zimmerm@uwm.edu www.michaelzimmer.org
  • 2. Agenda  What is Cloud Computing  Opportunities for Use in Research  Ethical Dimensions  Subject confidentiality & anonymity  Data privacy & security  Data ownership & stewardship  Research integrity & authorship  What can Researchers and IRBs do?  What do Researchers and IRBs need?
  • 3. What is Cloud Computing? KEXINO (CC BY-NC-ND 2.0) http://www.flickr.com/photos/kexino/4202662815/
  • 4. What is Cloud Computing?  On-demand, network-based access to computing recourses  Location independent, flexible, scalable, cost effective, little (if any) local support or maintenance  As of September 2008, 69 percent of Americans were using webmail services, storing data online, or otherwise using software programs, such as word processing applications, whose functionality is located on the web.
  • 5. 3 Layers of Cloud Computing http://en.wikipedia.org/wiki/File:Cloud_computing.svg (CC BY-SA 3.0)
  • 6. Application Layer  “Software as a service”  Providing productivity applications via the Web; no local software needed
  • 7. Platform Layer  “Platform as a service”  Providing application development platforms and operating systems via the Web  Can deploy applications without needing your own infrastructure
  • 8. Infrastructure Layer  “Infrastructure as a service”  Provide computing infrastructure on demand  Outsourcing servers, storage, network equipment, processing power, data centers
  • 9. 3 Layers of Cloud Computing http://en.wikipedia.org/wiki/File:Cloud_computing.svg (CC BY-SA 3.0)
  • 10. Research Opportunities for Cloud Computing  Application layer  Most common and easiest application of cloud  Data gathering, storage, collaboration  Platform layer  Hosted apps for recruitment & surveys  Infrastructure layer  Access to increased processing power for large- scale research projects  Some non-traditional uses
  • 11. Research Opportunities: Applications  Data gathering using web-based survey applications  SurveyMonkey  Zoomerang  Qualtrics  Typically used “in the wild”, sometimes institutionally-bound
  • 12. Research Opportunities: Applications  Data storage & sharing using cloud-based applications  Dropbox  Box.net  iCloud  Communication & collaboration using cloud- based applications  Gmail, IM, Skype  Google Docs, Office Live  Wikis
  • 13. Research Opportunities: Platforms  With skilled programmers, can build custom apps to deploy via cloud-based platforms  Subject recruitment and screening apps on Facebook  Building and deploying test instruments within online gaming platforms  Monitoring and activity tracking apps on mobile device platforms
  • 14. Research Opportunities: Infrastructure  Leverage cloud-based computing infrastructures to handle resource-intensive processing tasks  Clinical trial data storage & processing  Sharing extremely large databases  Innovative, non-traditional use of cloud- based processing “resources”  ____@Home (distributed computing)  FoldIt  Amazon Mechanical Turk
  • 16. FoldIt  Web-based puzzle video game to assist with protein folding research  Leverage millions of gamers to assist in data processing  Players produced an accurate 3D model of and AIDS-related enzyme in just ten days  Researchers had been trying for 15 years
  • 17. Amazon Mechanical Turk  Facilitates outsourcing of computational or other mundane tasks  Requesters post “Human Intelligence Tasks” offering minimal fees  Workers select tasks to complete for micropayments
  • 19. Ethical Dimensions  Subject confidentiality & anonymity  Data privacy & security  Data ownership & stewardship  Research integrity & authorship
  • 20. Subject Confidentiality & Anonymity  When recruiting subjects or collecting data with cloud-based applications…  Are IP addresses logged in such a way to allow re-identification of subjects  Using a Facebook app might provide researchers access to unnecessary personal information  Are cloud providers tracking data and usage themselves? Delivering ads?
  • 21. Data Privacy & Security  Critical concern of any cloud system, takes on even more importance when dealing with subject data  Are cloud-based communication and collaboration systems using SSL encryption?  Is data stored on cloud-servers encrypted?  What is service’s policy regarding 3rd party access  Advertisers  Investigative inquiry vs. subpoena vs. warrants?  Electronic Communication Privacy Act (ECPA)
  • 22. Data Ownership & Stewardship  Who owns, and who controls (meta)data in the cloud?  Are you granting the cloud provider any license to use your data or activities (for advertising, data mining, etc)?  Can you ensure data remains in the U.S.?  Can data be destroyed on demand, including backups?  Can you ensure cloud provider won’t hold your data “hostage”, or disappear?
  • 23. Research Integrity & Authorship  Should researchers rely on cloud-based data processing and analysis?  Must trust (audit?) external/collaborative processing platforms  Ethical to use Mechanical Turk, or otherwise outsource mundane tasks?  Authorship claims?
  • 24. What can Researchers & IRBs do?  Read and understand the Terms of Service  Incorporate in risk analysis  Include mention of cloud-based services in consent forms  Level of detail?  Monitor cloud services over life of project  Have terms or practices changed?  All this is new, complex, and difficult…
  • 25. What do Researchers & IRBs need?  Training in interpreting ToS  Tools to help make translation between federal regulations and ToS, and evaluate protocols  What else?