research, the cloud, and the irb

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  • 1.Research, the Cloud, and the IRBPRIM&R Workshop December 3, 2011 Michael Zimmer, PhDAssistant Professor, School of Information Studies Co-Director, Center for Information Policy Research University of Wisconsin-Milwaukee

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) 4. What is Cloud Computing? On-demand, network-based access tocomputing recourses Location independent, flexible, scalable, costeffective, little (if any) local support ormaintenance As of September 2008, 69 percent of Americanswere using webmail services, storing dataonline, or otherwise using softwareprograms, such as word processingapplications, whose functionality is located onthe web. 5. 3 Layers of Cloud Computing (CC BY-SA 3.0) 6. Application Layer Software as a service Providing productivity applications via theWeb; no local software needed 7. Platform Layer Platform as a service Providing application development platformsand operating systems via the Web Can deploy applications without needingyour own infrastructure 8. Infrastructure Layer Infrastructure as a service Provide computing infrastructure on demand Outsourcing servers, storage, networkequipment, processing power, data centers 9. 3 Layers of Cloud Computing (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 surveyapplications SurveyMonkey Zoomerang Qualtrics Typically used in the wild, sometimesinstitutionally-bound 12. Research Opportunities: Applications Data storage & sharing using cloud-basedapplications Dropbox iCloud Communication & collaboration using cloud-based applications Gmail, IM, Skype Google Docs, Office Live Wikis 13. Research Opportunities: Platforms With skilled programmers, can build customapps to deploy via cloud-based platforms Subject recruitment and screening apps onFacebook Building and deploying test instruments withinonline gaming platforms Monitoring and activity tracking apps on mobiledevice platforms 14. Research Opportunities: Infrastructure Leverage cloud-based computinginfrastructures to handle resource-intensiveprocessing 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. FoldIt 16. FoldIt Web-based puzzle video game to assist withprotein folding research Leverage millions of gamers to assist in dataprocessing Players produced an accurate 3D model ofand AIDS-related enzyme in just ten days Researchers had been trying for 15 years 17. Amazon Mechanical Turk Facilitates outsourcing of computational orother mundane tasks Requesters post Human Intelligence Tasksoffering minimal fees Workers select tasks to complete formicropayments 18. Ethical Dimensions Subject confidentiality & anonymity Data privacy & security Data ownership & stewardship Research integrity & authorship 19. Subject Confidentiality & Anonymity When recruiting subjects or collecting datawith cloud-based applications Are IP addresses logged in such a way to allowre-identification of subjects Using a Facebook app might provide researchersaccess to unnecessary personal information Are cloud providers tracking data and usagethemselves? Delivering ads? 20. Data Privacy & Security Critical concern of any cloud system, takes oneven more importance when dealing withsubject data Are cloud-based communication andcollaboration systems using SSL encryption? Is data stored on cloud-servers encrypted? What is services policy regarding 3rd party access Advertisers Investigative inquiry vs. subpoena vs. warrants? Electronic Communication Privacy Act (ECPA) 21. Data Ownership & Stewardship Who owns, and who controls (meta)data inthe cloud? Are you granting the cloud provider any license touse your data or activities (for advertising, datamining, etc)? Can you ensure data remains in the U.S.? Can data be destroyed on demand, includingbackups? Can you ensure cloud provider wont hold yourdata hostage, or disappear? 22. Research Integrity & Authorship Should researchers rely on cloud-based dataprocessing and analysis? Must trust (audit?) external/collaborativeprocessing platforms Ethical to use Mechanical Turk, or otherwiseoutsource mundane tasks? Authorship claims? 23. What can Researchers & IRBs do? Read and understand the Terms of Service Incorporate in risk analysis Include mention of cloud-based services inconsent forms Level of detail? Monitor cloud services over life of project Have terms or practices changed? All this is new, complex, and difficult 24. What do Researchers & IRBs need? Training in interpreting ToS Tools to help make translation betweenfederal regulations and ToS, and evaluateprotocols What else?


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