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Research, the Cloud, and the IRB

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Keynote address at the Sixth Annual Virginia IRB Consortium Conference: "Research Review Challenges: …

Keynote address at the Sixth Annual Virginia IRB Consortium Conference: "Research Review Challenges:
From the Small IRB to the Age of Technology" October 12, 2012
http://www.virginia.edu/vpr/irb/sbs/events_conference.html

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  • 1. Research, the Cloud, and the IRB:NEW OPPORTUNITIES :: NEW CHALLENGESMichael Zimmer, PhDAssistant Professor, School of Information StudiesDirector, Center for Information Policy ResearchUniversity of Wisconsin-Milwaukeezimmerm@uwm.eduwww.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 Postman10/12/2012 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 maintenance10/12/2012 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 cloud10/12/2012 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 needed10/12/2012 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 channels10/12/2012 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 centers10/12/2012 Virginia IRB Consortium Conference 10
  • 11. Research Opportunities for CloudComputing• 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 uses10/12/2012 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-bound10/12/2012 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 • Wikis10/12/2012 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 platforms10/12/2012 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 processing10/12/2012 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 years10/12/2012 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 micropayments10/12/2012 Virginia IRB Consortium Conference 19
  • 20. Amazon Mechanical Turk10/12/2012 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 & authorship10/12/2012 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 & authorship10/12/2012 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 researchersNissenbaum, 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 protectionOhm, P. “Broken promises of privacy: Responding to thesurprising 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” data10/12/2012 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 intermediariesCarpenter, K & Dittrich, D. “Bridging the Distance: Removing the Technology Buffer andSeeking 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 bodies10/12/2012 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 Postman10/12/2012 Virginia IRB Consortium Conference 38
  • 39. Research, the Cloud, and the IRB:NEW OPPORTUNITIES :: NEW CHALLENGESMichael Zimmer, PhDAssistant Professor, School of Information StudiesDirector, Center for Information Policy ResearchUniversity of Wisconsin-Milwaukeezimmerm@uwm.eduwww.michaelzimmer.org