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Penn State - Institutional Review Board - Open 2011

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Penn State - Institutional Review Board - Open 2011

  1. 1. Ethical Challenges in Research with Developing Communities<br />Carey Bell Rachel Dzombak Tara SulewskiKhanjan Mehta<br />Humanitarian Engineering & Social Entrepreneurship (HESE) Program<br />The Pennsylvania State University<br />
  2. 2. Road Map<br /><ul><li> Current Ventures
  3. 3. Importance of ‘Research’
  4. 4. The Institutional Review Board (IRB)
  5. 5. Challenges Faced & Lessons Learned</li></ul>Navigating the IRB process<br />Conducting study in Kenya<br />Larger Conflicts and Challenges<br />
  6. 6. HESE @ Penn State<br />
  7. 7. the ventures <br />
  8. 8. EDSGN 452 || Section 1<br />ESSENTIAL DESIGN<br />Renewable Energy Solar Driers Anaerobic Digesters<br />Wastewater Management Water Filtration Systems<br />Briquetting Machines Water Well Drilling Rigs<br />
  9. 9. EDSGN 452 || Section 2<br />Mashavu: <br />Networked Health Solutions for the Developing World<br />234 Students + 5 Faculty <br />40 Majors & Ten colleges<br />
  10. 10. EDSGN 452 || Section 3<br />WishVast<br />Building Trust and Social Capital using Cell Phones<br />Beta-tested in Kenya; Pilot Testing in South Africa<br />
  11. 11. EDSGN 452 || Section 4<br />iSPACES: <br />Rethinking Science Education in Tanzania<br />Bachelors of Education (Science) Degree<br />Science, Systems and Entrepreneurship<br />
  12. 12. EDSGN 452 || Section 5<br />Project Prerana + Mpower<br />ICT Solutions for Women’s Education <br />Affordable Technologies for Maternal Health<br />
  13. 13. Fieldwork: Real; Rigorous; Intense <br />
  14. 14. Research Emphasis<br />Applied Science, Designs,<br />Methodologies, Curricular Models<br />Lessons Learned & Resources<br />23P; 6R; 9M; 5D; 12N<br />
  15. 15. Why Research?<br />
  16. 16. <ul><li> Anecdotal vs. (in)Credible Research
  17. 17. Increased Academic Rigor
  18. 18. Enhanced Résumés
  19. 19. Building a body of knowledge</li></li></ul><li>Institutional Review Board<br />Tuskegee Syphilis Study<br />Declaration of Helsinki<br />1932<br />1964<br />1974<br />1947<br />1930<br />2011<br />National Research Act<br />Nuremburg Trials<br />
  20. 20. Institutional Review Board<br />Review and Approve ‘research’ involving human participation<br />Operates independently in compliance with Federal Regulations<br />Exempt<br />Expedited<br />Full Review<br />
  21. 21. Navigating the IRB<br />Informed Consent <br />Form<br />FDA Approval<br />Local Approval<br />Detailed Protocol<br />Minimal Risk<br />Expedited<br />(3 weeks)<br />Data Storage <br />&<br />Disposal<br />Photos<br />Location<br />Collaboration Letters<br />Recruitment Script<br />
  22. 22. Benefits of IRB <br />Standardization; Rigor; Peace of Mind <br />
  23. 23. Critiques of IRB <br />Biomedical Res; Time constraints; Simplification<br />
  24. 24. Research in Developing Communities<br />Chaotic; <br />
  25. 25. Research in Developing Communities<br />Chaotic; Dynamic;<br />
  26. 26. Research in Developing Communities<br />Chaotic; Dynamic; Unfamiliar<br />
  27. 27. Countdown: Lessons Learned<br />9<br />8<br />7<br />6<br />5<br />4<br />3<br />2<br />1<br />0<br />
  28. 28. 10: Kumi<br />Preparing Protocol<br />START EARLY!!!<br />
  29. 29. 9: Tisa<br />Preparing Protocol<br />Be concise; Meet Face to Face; Get Letters<br />
  30. 30. 8: Nane<br />Preparing Protocol<br />Risk Management: What if???<br />
  31. 31. HakunaMatata<br />7: Saba<br />Recruitment and Consent<br />
  32. 32. 6: Sita<br />HakunaMatata<br />Language Barrier<br />
  33. 33. 5: Tano<br />HakunaMatata<br />Research Participation Incentives<br />
  34. 34. 4: Nne<br />HakunaMatata<br />Involvement Criteria<br />
  35. 35. 3: Tatu<br />Non-medical student Engagement<br />HakunaMatata<br />
  36. 36. 2: Mbili<br />Larger Conflicts<br />Research on a shoestring budget<br />
  37. 37. 1: Moja<br />Larger Conflicts<br />“Hit and Run” Research Ethical? <br />
  38. 38. Larger Conflicts<br />0: Sifuri<br />Chaos of Eship (in Africa) vs. <br />Discipline of Research<br />
  39. 39. Appropriate & Rigorous Research and Design to<br />Build Multi-Million Smile Enterprises<br />

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