Ethical Challenges in Research with Developing Communities

Humanitarian Engineering & Social Entrepreneurship (HESE) Program

The Pennsylvania State University

Carey Bell Rachel Dzombak Tara Sulewski Khanjan Mehta

Road Map

• Current Ventures • Importance of ‘Research’• The Institutional Review Board (IRB)• Challenges Faced & Lessons Learned

1. Navigating the IRB process2. Conducting study in Kenya3. Larger Conflicts and Challenges

HESE @ Penn StateTeaching

• 13-credit ECE Certificate

• Fall semester:• Sensor and Controller System

Integration• Social Entrepreneurship

• Spring semester:• Projects in Community

Service Engineering• Design for Developing

Communities

Research• IJSLE: HESE

• eplum Assessment• Systems Thinking• Cultural Anthropology• Social networks, trust

and cellphones• Indigenous Knowledge

Systems and Sticky Info• Design Space Exploration• Changing the

Conversation• Global Jugaad Commons

Engagement• Mashavu• WishVast• Essential Design• iSPACES• HESE - India

• Invention 2 Venture Conference

• Milking the Rhino: ISS• Kochia Chronicles• AcademIK Connections• *K-12(Center for

Science in the Schools)

the ventures

ED

SG

N 4

52

||

Secti

on

1

ESSENTIAL DESIGNRenewable Energy Solar Driers Anaerobic Digesters

Wastewater Management Water Filtration Systems

Briquetting Machines Water Well Drilling Rigs

ED

SG

N 4

52

||

Secti

on

2

Mashavu: Networked Health Solutions for the Developing World

234 Students + 5 Faculty 40 Majors & Ten colleges

WishVastBuilding Trust and Social Capital using Cell Phones

Beta-tested in Kenya; Pilot Testing in South Africa

ED

SG

N 4

52

||

Secti

on

3

iSPACES: Rethinking Science Education in Tanzania

Bachelors of Education (Science) Degree

Science, Systems and Entrepreneurship

ED

SG

N 4

52

||

Secti

on

4

Project Prerana + MpowerICT Solutions for Women’s Education

Affordable Technologies for Maternal Health

ED

SG

N 4

52

||

Secti

on

5

Fieldwork: Real; Rigorous; Intense

23P; 6R; 9M; 5D; 12N

Applied Science, Designs,Methodologies, Curricular ModelsLessons Learned & Resources

Research Emphasis

Why Research?

• Anecdotal vs. (in)Credible Research• Increased Academic Rigor• Enhanced Résumés• Building a body of knowledge

Institutional Review Board

1932

1947 1974National

Research Act

1930 2011

Tuskegee Syphilis Study

Nuremburg Trials

1964

Declaration of Helsinki

Institutional Review Board

• Review and Approve ‘research’ involving human participation• Operates independently in compliance with Federal Regulations

Exempt Expedited Full Review

Navigating the IRB

Minimal RiskExpedited(3 weeks)

LocationLocal

Approval

Collaboration Letters

Recruitment Script

Detailed Protocol

Data Storage &

Disposal

FDA Approval

Informed Consent

FormPhotos

Benefits of IRB

Standardization; Rigor; Peace of Mind

Critiques of IRB

Biomedical Res; Time constraints; Simplification

Research in Developing Communities

Chaotic;

Chaotic; Dynamic;

Research in Developing Communities

Chaotic; Dynamic; Unfamiliar

Research in Developing Communities

Countdown: Lessons Learned

98765

43210

Preparing Protocol

START EARLY!!!

10: Kumi

Preparing Protocol

Be concise; Meet Face to Face; Get Letters

9: Tisa

Preparing Protocol8: Nane

Risk Management: What if???

Hakuna Matata

Recruitment and Consent

7: Saba

Hakuna Matata

Language Barrier

6: Sita

Hakuna Matata

Research Participation Incentives

5: Tano

Hakuna Matata

Involvement Criteria

4: Nne

Non-medical student Engagement

3: TatuHakuna Matata

Larger Conflicts

Research on a shoestring budget

2: Mbili

Larger Conflicts1: Moja

“Hit and Run” Research Ethical?

Larger Conflicts

Chaos of Eship (in Africa) vs. Discipline of Research

0: Sifuri

Appropriate & Rigorous Research and Design to

Build Multi-Million Smile Enterprises