Research, the Cloud, and the IRB

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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


<ul><li> 1. Research, the Cloud, and the IRB:NEW OPPORTUNITIES :: NEW CHALLENGESMichael Zimmer, PhDAssistant Professor, School of Information StudiesDirector, Center for Information Policy ResearchUniversity of </li> <li> 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 </li> <li> 3. Agenda What is Cloud Computing? Opportunities for Use in Research Ethical Dimensions Subject confidentiality &amp; anonymity Data privacy &amp; security Data ownership &amp; stewardship Research integrity &amp; authorship Conceptual Gaps &amp; Policy Vacuums What can Researchers and IRBs do?10/12/2012 Virginia IRB Consortium Conference 3 </li> <li> 4. What is Cloud Computing? KEXINO (CC BY-NC-ND 2.0) Virginia IRB Consortium Conference 4 </li> <li> 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 </li> <li> 6. What is Cloud Computing? Milestones 1999 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 Amazons 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 </li> <li> 7. 3 Layers of Cloud Computing (CC BY-SA 3.0)10/12/2012 Virginia IRB Consortium Conference 7 </li> <li> 8. Application Layer Software as a service Providing productivity applications via the Web; no local software needed10/12/2012 Virginia IRB Consortium Conference 8 </li> <li> 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 </li> <li> 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 </li> <li> 11. Research Opportunities for CloudComputing Application layer Most common and easiest application of cloud Data gathering, storage, collaboration Platform layer Hosted apps for recruitment &amp; surveys Infrastructure layer Access to increased processing power for large-scale research projects Some non-traditional uses10/12/2012 Virginia IRB Consortium Conference 11 </li> <li> 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 </li> <li> 13. Research Opportunities: Applications Data storage &amp; sharing using cloud-based applications Dropbox iCloud Communication &amp; collaboration using cloud- based applications Gmail, IM, Skype Google Docs, Office Live Wikis10/12/2012 Virginia IRB Consortium Conference 13 </li> <li> 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 </li> <li> 15. Research Opportunities: Infrastructure Leverage cloud-based computing infrastructures to handle resource-intensive processing tasks Clinical trial data storage &amp; 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 </li> <li> 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 </li> <li> 17. Fold.It Virginia IRB Consortium Conference 17 </li> <li> 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 </li> <li> 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 </li> <li> 20. Amazon Mechanical Turk10/12/2012 Virginia IRB Consortium Conference 20 </li> <li> 21. 3 Layers of Cloud Computing (CC BY-SA 3.0)10/12/2012 Virginia IRB Consortium Conference 21 </li> <li> 22. Ethical Dimensions Subject confidentiality &amp; anonymity Data privacy &amp; security Data ownership &amp; stewardship Research integrity &amp; authorship10/12/2012 Virginia IRB Consortium Conference 22 </li> <li> 23. Subject Confidentiality &amp; 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 </li> <li> 24. Data Privacy &amp; 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 services 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 </li> <li> 25. Data Ownership &amp; 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 wont hold your data hostage, or disappear? 10/12/2012 Virginia IRB Consortium Conference 25 </li> <li> 26. Research Integrity &amp; 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 </li> <li> 27. Ethical Dimensions Subject confidentiality &amp; anonymity Data privacy &amp; security Data ownership &amp; stewardship Research integrity &amp; authorship10/12/2012 Virginia IRB Consortium Conference 27 </li> <li> 28. Conceptual Gaps &amp; 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 </li> <li> 29. Conceptual Gaps &amp; 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 </li> <li> 30. Conceptual Gap: Privacy Presumption that because subjects make information available on a cloud-based service, they dont 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 doesnt 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 </li> <li> 31. Conceptual Gap: Anonymity...</li></ul>