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Research, the Cloud, and the IRB:
NEW OPPORTUNITIES :: NEW CHALLENGES




Michael Zimmer, PhD
Assistant Professor, School of Information Studies
Director, Center for Information Policy Research
University of Wisconsin-Milwaukee
zimmerm@uwm.edu
www.michaelzimmer.org
• Anyone who has studied the history of
  technology knows that technological change is
  always a Faustian bargain
• Technology giveth and technology taketh away,
  and not always in equal measure.
• A new technology sometimes creates more than
  it destroys. Sometimes, it destroys more than it
  creates. But it is never one-sided.
                                                       •   Neil Postman




10/12/2012        Virginia IRB Consortium Conference                  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
• Conceptual Gaps & Policy Vacuums
• What can Researchers and IRBs do?

10/12/2012               Virginia IRB Consortium Conference   3
What is Cloud Computing?




                          KEXINO (CC BY-NC-ND 2.0) http://www.flickr.com/photos/kexino/4202662815/

10/12/2012   Virginia IRB Consortium Conference                                              4
What is Cloud Computing?
• On-demand, network-based access to computing
  recourses
• Features
     •   Location independent; supports increased mobility
     •   Flexible, scalable, robust
     •   On-demand performance; big data processing
     •   Little (if any) local support or maintenance




10/12/2012               Virginia IRB Consortium Conference   5
What is Cloud Computing?
• Milestones
     •   1999 – Salesforce.com delivers enterprise services via the
         web
     •   2002 – Amazon Web Services (storage, computation, human
         intelligence via the cloud)
     •   2004 – Gmail reboots web-based email, follows with Google
         Docs
     •   2006 – Amazon’s Elastic Compute Cloud (EC2)
     •   2007 – IBM shifts focus to the cloud
• Popularity
     • As early as 2008, 69 percent of Americans were using
       webmail services, storing data online, or otherwise using
       software programs located on the web
     • By 2011, 80% of Fortune 500 companies use IBM cloud


10/12/2012                 Virginia IRB Consortium Conference         6
3 Layers of Cloud Computing




                                           http://en.wikipedia.org/wiki/File:Cloud_computing.svg (CC BY-SA 3.0)



10/12/2012   Virginia IRB Consortium Conference                                                    7
Application Layer
• “Software as a service”
• Providing productivity applications via the Web;
  no local software needed




10/12/2012         Virginia IRB Consortium Conference   8
Platform Layer
• “Platform as a service”
• Providing application development platforms and
  operating systems via the Web
• Can deploy applications without needing your
  own infrastructure or distribution channels




10/12/2012         Virginia IRB Consortium Conference   9
Infrastructure Layer
• “Infrastructure as a service”
• Provide computing infrastructure on demand
• Outsourcing servers, storage, network
  equipment, processing power, data centers




10/12/2012         Virginia IRB Consortium Conference   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


10/12/2012                Virginia IRB Consortium Conference    11
Research Opportunities: Applications
• Data gathering using web-based survey
  applications
     •   SurveyMonkey
     •   Zoomerang
     •   Qualtrics
• Typically used “in the wild”, sometimes
  institutionally-bound




10/12/2012              Virginia IRB Consortium Conference   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

10/12/2012                Virginia IRB Consortium Conference   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




10/12/2012                Virginia IRB Consortium Conference   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)
  •   Fold.It
  •   Amazon Mechanical Turk



 10/12/2012               Virginia IRB Consortium Conference   15
Fold.It
• Web-based puzzle video game to assist with
  protein folding research
• Leverage millions of gamers to assist in data
  processing




10/12/2012         Virginia IRB Consortium Conference   16
Fold.It




                                                  http://fold.it/
10/12/2012   Virginia IRB Consortium Conference                     17
Fold.It
• 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 10 days
     •   Researchers had been trying for 15 years




10/12/2012               Virginia IRB Consortium Conference   18
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




10/12/2012         Virginia IRB Consortium Conference   19
Amazon Mechanical Turk




10/12/2012   Virginia IRB Consortium Conference   20
3 Layers of Cloud Computing




                                           http://en.wikipedia.org/wiki/File:Cloud_computing.svg (CC BY-SA 3.0)



10/12/2012   Virginia IRB Consortium Conference                                                   21
Ethical Dimensions
• Subject confidentiality & anonymity
• Data privacy & security
• Data ownership & stewardship
• Research integrity & authorship




10/12/2012        Virginia IRB Consortium Conference   22
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? Selling user data?




10/12/2012             Virginia IRB Consortium Conference   23
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)




  10/12/2012                   Virginia IRB Consortium Conference   24
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?




 10/12/2012              Virginia IRB Consortium Conference    25
Research Integrity & Authorship
• Should researchers rely on cloud-based data
  processing and analysis?
   •   Can you trust (or audit?) external/collaborative processing
       platforms
   •   Ethical to use Mechanical Turk, or otherwise outsource
       mundane tasks to unknown persons for nominal wages?
   •   Authorship claims?




  10/12/2012              Virginia IRB Consortium Conference    26
Ethical Dimensions
• Subject confidentiality & anonymity
• Data privacy & security
• Data ownership & stewardship
• Research integrity & authorship




10/12/2012        Virginia IRB Consortium Conference   27
Conceptual Gaps & Policy Vacuums
• Emergence of new technologies often lead to
  conceptual gaps in how we think about ethical
  problems, and reveal policy vacuums for how we
  should best address them

     • Computer technology transforms “many of our human
       activities and social institutions,” and will “leave us with
       policy and conceptual vacuums about how to use
       computer technology”
     • “Often, either no policies for conduct in these
       situations exist or existing policies seem inadequate.
                            •   Jim Moor, “What is Computer Ethics?”

10/12/2012               Virginia IRB Consortium Conference       28
Conceptual Gaps & Policy Vacuums
• The fluidity and complexity of cloud-based tools
  and platforms creates potential conceptual gaps
     • Are these ethical dimensions merely the same as before,
       or fundamentally different due to the cloud?
     • Does the nature of anonymity, privacy, consent, even
       harm change when dealing with cloud-based research?




10/12/2012             Virginia IRB Consortium Conference   29
Conceptual Gap: Privacy
          • Presumption that because subjects make information
            available on a cloud-based service, they don’t have an
            expectation of privacy
                • Researchers/IRBs might assume everything is always public, and
                  was meant to be
                • Assumes no harm could come to subjects if data is already
                  “public”
          • New ethical problems…
                • Ignores contextual nature of sharing
                • Fails to recognize the strict dichotomy of public/private doesn’t
                  apply in the 2.0 world
                • Need to track if ToS/architecture have changed, or if users even
                  understand what is available to researchers
Nissenbaum, H. 2011. “Privacy in Context: Technology,
Policy, and the Integrity of Social Life”
             10/12/2012                                 Virginia IRB Consortium Conference   30
Conceptual Gap: Anonymity vs.
             Identifiability
             • Presumption that stripping names & other obvious
               identifiers provides sufficient anonymity when
               sharing data in the cloud
                  •   Assumes only PII allows re-identification
             • New ethical problems…
                  •   Ignores how anything can potentially identifiable
                      information and become the “missing link” to re-identify
                      an entire dataset
                  •   “Anonymous” datasets are not achievable and provides
                      false sense of protection
Ohm, P. “Broken promises of privacy: Responding to the
surprising failure of anonymization.” UCLA Law Review

             10/12/2012                             Virginia IRB Consortium Conference   31
Conceptual Gap: Consent
• Presumption that because something is shared or
  available without a password, the subject is
  consenting to it being harvested for research
     •   Assumes no harm can come from use of data already
         shared with friends or other contextually-bound circles
• New ethical problems…
     •   Must recognize that a user making something public
         online comes with a set of assumptions/expectations
         about who can access and how
     •   Must recognize how research methods might allow un-
         anticipated access to “restricted” data

10/12/2012                Virginia IRB Consortium Conference   32
Conceptual Gap: Harm
• Presumption that “harm” means risk of physical or
  tangible impact on subject
  •   Researchers often imply “data is already public, so what
      harm could possibly happen”
• New ethical problems
  •   Must move beyond the concept of harm as requiring a
      tangible consequence
      •   Protecting from harm is more than protecting from hackers,
          spammers, identity thieves, etc
  •   Consider dignity/autonomy theories of harm
      •   Must a “wrong” occur for there to be damage to the subject?
      •   Do subjects deserve control over the use of their data streams?
 10/12/2012                   Virginia IRB Consortium Conference            33
Conceptual Gap: Human Subjects
             • Researchers (esp. CompSci) often interact only
               with datasets, objects, or avatars, thus feel a
               conceptual distance from an actual human
                   •   Often don’t consider what they do as “human subject”
                       research
             • New ethical problems
                   •   Must bridge this (artificial) distance between
                       researcher and the actual human subject
                   •   Also consider other stakeholders within the complex
                       arrangement of information intermediaries
Carpenter, K & Dittrich, D. “Bridging the Distance: Removing the Technology Buffer and
Seeking Consistent Ethical Analysis in Computer Security Research”

             10/12/2012                               Virginia IRB Consortium Conference   34
Conceptual Gaps & Policy Vacuums
• The fluidity and complexity of cloud-based tools and
  platforms creates potential conceptual gaps
     • Are these ethical dimensions merely the same as before, or
       fundamentally different due to the cloud?
     • Does the nature of anonymity, privacy, consent, even harm
       change when dealing with cloud-based research?
• Leaving researchers & IRBs with considerable policy
  vacuums
     • How should researchers deal with using the cloud in their
       projects?
     • How should IRBs review them?

• And how can we ensure good research still gets done…

10/12/2012               Virginia IRB Consortium Conference         35
What can Researchers & IRBs do?
- broadly
• Get educated, find recourses
     •   Events like today; PRIM&R
     •   Utilize disciplinary resources
         •   For example: “Ethical decision-making and Internet research:
             Recommendations from the AoIR Ethics Working Committee”
     •   Keep up on research
     •   Utilize experts
• Look for guidance
     •   Increased attention hopefully will prompt guidance
         from HHS and related regulatory bodies


10/12/2012                    Virginia IRB Consortium Conference            36
What can Researchers & IRBs do?
- practically
• Read and understand the Terms of Service
     •   Incorporate in risk analysis
• Include mention of cloud-based services in
  consent forms
     •   Level of detail?
• Monitor/audit cloud services over life of project
     •   Have terms or practices changed?
• All this is new, complex, and difficult…


10/12/2012                  Virginia IRB Consortium Conference   37
• Anyone who has studied the history of
  technology knows that technological change is
  always a Faustian bargain
• Technology giveth and technology taketh away,
  and not always in equal measure.
• A new technology sometimes creates more than
  it destroys. Sometimes, it destroys more than it
  creates. But it is never one-sided.
                                                       •   Neil Postman




10/12/2012        Virginia IRB Consortium Conference                 38
Research, the Cloud, and the IRB:
NEW OPPORTUNITIES :: NEW CHALLENGES




Michael Zimmer, PhD
Assistant Professor, School of Information Studies
Director, Center for Information Policy Research
University of Wisconsin-Milwaukee
zimmerm@uwm.edu
www.michaelzimmer.org

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Research Cloud IRB New Opportunities Challenges

  • 1. Research, the Cloud, and the IRB: NEW OPPORTUNITIES :: NEW CHALLENGES Michael Zimmer, PhD Assistant Professor, School of Information Studies Director, Center for Information Policy Research University of Wisconsin-Milwaukee zimmerm@uwm.edu www.michaelzimmer.org
  • 2. • Anyone who has studied the history of technology knows that technological change is always a Faustian bargain • Technology giveth and technology taketh away, and not always in equal measure. • A new technology sometimes creates more than it destroys. Sometimes, it destroys more than it creates. But it is never one-sided. • Neil Postman 10/12/2012 Virginia IRB Consortium Conference 2
  • 3. Agenda • What is Cloud Computing? • Opportunities for Use in Research • Ethical Dimensions • Subject confidentiality & anonymity • Data privacy & security • Data ownership & stewardship • Research integrity & authorship • Conceptual Gaps & Policy Vacuums • What can Researchers and IRBs do? 10/12/2012 Virginia IRB Consortium Conference 3
  • 4. What is Cloud Computing? KEXINO (CC BY-NC-ND 2.0) http://www.flickr.com/photos/kexino/4202662815/ 10/12/2012 Virginia IRB Consortium Conference 4
  • 5. What is Cloud Computing? • On-demand, network-based access to computing recourses • Features • Location independent; supports increased mobility • Flexible, scalable, robust • On-demand performance; big data processing • Little (if any) local support or maintenance 10/12/2012 Virginia IRB Consortium Conference 5
  • 6. What is Cloud Computing? • Milestones • 1999 – Salesforce.com delivers enterprise services via the web • 2002 – Amazon Web Services (storage, computation, human intelligence via the cloud) • 2004 – Gmail reboots web-based email, follows with Google Docs • 2006 – Amazon’s Elastic Compute Cloud (EC2) • 2007 – IBM shifts focus to the cloud • Popularity • As early as 2008, 69 percent of Americans were using webmail services, storing data online, or otherwise using software programs located on the web • By 2011, 80% of Fortune 500 companies use IBM cloud 10/12/2012 Virginia IRB Consortium Conference 6
  • 7. 3 Layers of Cloud Computing http://en.wikipedia.org/wiki/File:Cloud_computing.svg (CC BY-SA 3.0) 10/12/2012 Virginia IRB Consortium Conference 7
  • 8. Application Layer • “Software as a service” • Providing productivity applications via the Web; no local software needed 10/12/2012 Virginia IRB Consortium Conference 8
  • 9. Platform Layer • “Platform as a service” • Providing application development platforms and operating systems via the Web • Can deploy applications without needing your own infrastructure or distribution channels 10/12/2012 Virginia IRB Consortium Conference 9
  • 10. Infrastructure Layer • “Infrastructure as a service” • Provide computing infrastructure on demand • Outsourcing servers, storage, network equipment, processing power, data centers 10/12/2012 Virginia IRB Consortium Conference 10
  • 11. 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 10/12/2012 Virginia IRB Consortium Conference 11
  • 12. Research Opportunities: Applications • Data gathering using web-based survey applications • SurveyMonkey • Zoomerang • Qualtrics • Typically used “in the wild”, sometimes institutionally-bound 10/12/2012 Virginia IRB Consortium Conference 12
  • 13. 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 10/12/2012 Virginia IRB Consortium Conference 13
  • 14. 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 10/12/2012 Virginia IRB Consortium Conference 14
  • 15. 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) • Fold.It • Amazon Mechanical Turk 10/12/2012 Virginia IRB Consortium Conference 15
  • 16. Fold.It • Web-based puzzle video game to assist with protein folding research • Leverage millions of gamers to assist in data processing 10/12/2012 Virginia IRB Consortium Conference 16
  • 17. Fold.It http://fold.it/ 10/12/2012 Virginia IRB Consortium Conference 17
  • 18. Fold.It • 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 10 days • Researchers had been trying for 15 years 10/12/2012 Virginia IRB Consortium Conference 18
  • 19. 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 10/12/2012 Virginia IRB Consortium Conference 19
  • 20. Amazon Mechanical Turk 10/12/2012 Virginia IRB Consortium Conference 20
  • 21. 3 Layers of Cloud Computing http://en.wikipedia.org/wiki/File:Cloud_computing.svg (CC BY-SA 3.0) 10/12/2012 Virginia IRB Consortium Conference 21
  • 22. Ethical Dimensions • Subject confidentiality & anonymity • Data privacy & security • Data ownership & stewardship • Research integrity & authorship 10/12/2012 Virginia IRB Consortium Conference 22
  • 23. 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? Selling user data? 10/12/2012 Virginia IRB Consortium Conference 23
  • 24. 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) 10/12/2012 Virginia IRB Consortium Conference 24
  • 25. 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? 10/12/2012 Virginia IRB Consortium Conference 25
  • 26. Research Integrity & Authorship • Should researchers rely on cloud-based data processing and analysis? • Can you trust (or audit?) external/collaborative processing platforms • Ethical to use Mechanical Turk, or otherwise outsource mundane tasks to unknown persons for nominal wages? • Authorship claims? 10/12/2012 Virginia IRB Consortium Conference 26
  • 27. Ethical Dimensions • Subject confidentiality & anonymity • Data privacy & security • Data ownership & stewardship • Research integrity & authorship 10/12/2012 Virginia IRB Consortium Conference 27
  • 28. Conceptual Gaps & Policy Vacuums • Emergence of new technologies often lead to conceptual gaps in how we think about ethical problems, and reveal policy vacuums for how we should best address them • Computer technology transforms “many of our human activities and social institutions,” and will “leave us with policy and conceptual vacuums about how to use computer technology” • “Often, either no policies for conduct in these situations exist or existing policies seem inadequate. • Jim Moor, “What is Computer Ethics?” 10/12/2012 Virginia IRB Consortium Conference 28
  • 29. Conceptual Gaps & Policy Vacuums • The fluidity and complexity of cloud-based tools and platforms creates potential conceptual gaps • Are these ethical dimensions merely the same as before, or fundamentally different due to the cloud? • Does the nature of anonymity, privacy, consent, even harm change when dealing with cloud-based research? 10/12/2012 Virginia IRB Consortium Conference 29
  • 30. Conceptual Gap: Privacy • Presumption that because subjects make information available on a cloud-based service, they don’t have an expectation of privacy • Researchers/IRBs might assume everything is always public, and was meant to be • Assumes no harm could come to subjects if data is already “public” • New ethical problems… • Ignores contextual nature of sharing • Fails to recognize the strict dichotomy of public/private doesn’t apply in the 2.0 world • Need to track if ToS/architecture have changed, or if users even understand what is available to researchers Nissenbaum, H. 2011. “Privacy in Context: Technology, Policy, and the Integrity of Social Life” 10/12/2012 Virginia IRB Consortium Conference 30
  • 31. Conceptual Gap: Anonymity vs. Identifiability • Presumption that stripping names & other obvious identifiers provides sufficient anonymity when sharing data in the cloud • Assumes only PII allows re-identification • New ethical problems… • Ignores how anything can potentially identifiable information and become the “missing link” to re-identify an entire dataset • “Anonymous” datasets are not achievable and provides false sense of protection Ohm, P. “Broken promises of privacy: Responding to the surprising failure of anonymization.” UCLA Law Review 10/12/2012 Virginia IRB Consortium Conference 31
  • 32. Conceptual Gap: Consent • Presumption that because something is shared or available without a password, the subject is consenting to it being harvested for research • Assumes no harm can come from use of data already shared with friends or other contextually-bound circles • New ethical problems… • Must recognize that a user making something public online comes with a set of assumptions/expectations about who can access and how • Must recognize how research methods might allow un- anticipated access to “restricted” data 10/12/2012 Virginia IRB Consortium Conference 32
  • 33. Conceptual Gap: Harm • Presumption that “harm” means risk of physical or tangible impact on subject • Researchers often imply “data is already public, so what harm could possibly happen” • New ethical problems • Must move beyond the concept of harm as requiring a tangible consequence • Protecting from harm is more than protecting from hackers, spammers, identity thieves, etc • Consider dignity/autonomy theories of harm • Must a “wrong” occur for there to be damage to the subject? • Do subjects deserve control over the use of their data streams? 10/12/2012 Virginia IRB Consortium Conference 33
  • 34. Conceptual Gap: Human Subjects • Researchers (esp. CompSci) often interact only with datasets, objects, or avatars, thus feel a conceptual distance from an actual human • Often don’t consider what they do as “human subject” research • New ethical problems • Must bridge this (artificial) distance between researcher and the actual human subject • Also consider other stakeholders within the complex arrangement of information intermediaries Carpenter, K & Dittrich, D. “Bridging the Distance: Removing the Technology Buffer and Seeking Consistent Ethical Analysis in Computer Security Research” 10/12/2012 Virginia IRB Consortium Conference 34
  • 35. Conceptual Gaps & Policy Vacuums • The fluidity and complexity of cloud-based tools and platforms creates potential conceptual gaps • Are these ethical dimensions merely the same as before, or fundamentally different due to the cloud? • Does the nature of anonymity, privacy, consent, even harm change when dealing with cloud-based research? • Leaving researchers & IRBs with considerable policy vacuums • How should researchers deal with using the cloud in their projects? • How should IRBs review them? • And how can we ensure good research still gets done… 10/12/2012 Virginia IRB Consortium Conference 35
  • 36. What can Researchers & IRBs do? - broadly • Get educated, find recourses • Events like today; PRIM&R • Utilize disciplinary resources • For example: “Ethical decision-making and Internet research: Recommendations from the AoIR Ethics Working Committee” • Keep up on research • Utilize experts • Look for guidance • Increased attention hopefully will prompt guidance from HHS and related regulatory bodies 10/12/2012 Virginia IRB Consortium Conference 36
  • 37. What can Researchers & IRBs do? - practically • Read and understand the Terms of Service • Incorporate in risk analysis • Include mention of cloud-based services in consent forms • Level of detail? • Monitor/audit cloud services over life of project • Have terms or practices changed? • All this is new, complex, and difficult… 10/12/2012 Virginia IRB Consortium Conference 37
  • 38. • Anyone who has studied the history of technology knows that technological change is always a Faustian bargain • Technology giveth and technology taketh away, and not always in equal measure. • A new technology sometimes creates more than it destroys. Sometimes, it destroys more than it creates. But it is never one-sided. • Neil Postman 10/12/2012 Virginia IRB Consortium Conference 38
  • 39. Research, the Cloud, and the IRB: NEW OPPORTUNITIES :: NEW CHALLENGES Michael Zimmer, PhD Assistant Professor, School of Information Studies Director, Center for Information Policy Research University of Wisconsin-Milwaukee zimmerm@uwm.edu www.michaelzimmer.org