Research, the Cloud, and the IRB


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Research, the Cloud, and the IRB

  1. 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
  2. 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. 3. What is Cloud Computing?KEXINO (CC BY-NC-ND 2.0)
  4. 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. 5. 3 Layers of Cloud Computing (CC BY-SA 3.0)
  6. 6. Application Layer “Software as a service” Providing productivity applications via the Web; no local software needed
  7. 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. 8. Infrastructure Layer “Infrastructure as a service” Provide computing infrastructure on demand Outsourcing servers, storage, network equipment, processing power, data centers
  9. 9. 3 Layers of Cloud Computing (CC BY-SA 3.0)
  10. 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. 11. Research Opportunities: Applications Data gathering using web-based survey applications  SurveyMonkey  Zoomerang  Qualtrics Typically used “in the wild”, sometimes institutionally-bound
  12. 12. Research Opportunities: Applications Data storage & sharing using cloud-based applications  Dropbox   iCloud Communication & collaboration using cloud- based applications  Gmail, IM, Skype  Google Docs, Office Live  Wikis
  13. 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. 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
  15. 15. FoldIt
  16. 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. 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
  18. 18. Ethical Dimensions Subject confidentiality & anonymity Data privacy & security Data ownership & stewardship Research integrity & authorship
  19. 19. 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?
  20. 20. 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)
  21. 21. 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?
  22. 22. 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?
  23. 23. 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…
  24. 24. What do Researchers & IRBs need? Training in interpreting ToS Tools to help make translation between federal regulations and ToS, and evaluate protocols What else?