Cultural and contextual relativism and ethics in global health research

1. Cultural and contextual relativism and ethics in global health research María Luisa Zúñiga, Ph.D. Division of Global Public Health UCSD School of Medicine October 2011 Support From: NIMH MH072353-05,  MH084266-02 & NCCAM AT004676-01A1

2. “To live on the border is to live in the center: to be at the entrance and the exit; to inhabit two worlds, two cultures and to accept both” José Antonio Burciaga

3. Why is cultural relativism relevant to ethics of global health research? Because it can influence how we: • Conceptualize and design research • Write our IRB protocols (e.g., What is an appropriate amount or type of incentive? How do we ascertain that a potential participant really understands what is being asked of them?) • Implement our study or intervention • Interpret and present our research findings • Engage our research partners and communities

4. The study that didn’t go as planned… and that’s a good thing SUPER MUJER ¡No Estás Sola!

5. Ethics of International Engagement and Service-Learning Project. (2011). Global praxis: Exploring the ethics of engagement abroad. Vancouver, BC: Retrieved from: http://ethicsofisl.ubc.ca/ Resource kit: http://ethicsofisl.ubc.ca/downloads/_2011-EIESL-kit-loRes.pdf

6. Attributes of Ethical Engagement: • Respectful and ethical engagement • Honesty and truthfulness • Humility and openness • Moral courage • Compassion • Generosity of Spirit • Mutuality and reciprocity • Commitment to social Justice

7. Transnational engagement in research “The language of international development work traditionally rests on an us/them dialectic that puts the development worker in the role of “problem solver” and the international community in the role of “persons-needing-help”“ p. 24, EISL

8. When paternalism rears its ugly head… • _________ government just doesn’t get it, they are so corrupt • You have to jump through so many hoops to get access to their data • Their infrastructure is so weak it is hard to get anything done • They don’t have any grocery stores there • Their physicians just aren’t trained to do research • They hardly publish • It is less formal there, we don’t have to worry about _________ • We tried to intervene, but they just don’t want to change…

9. Reflective approach to ethics “Gain a more critical understanding of ethical issues by gathering multiple perspectives. This requires that participants are willing to consider approaches and perspectives that may not be their own. “ P21 EIESL Project

10. Immigration and health issues in Mexico

11. Intercultural Understanding “explores the complexities and ethical implications embedded in intercultural interactions, cultural (mis)understanding, power dynamics, and diverse ways of knowing. p. 41 EIESL

12. Developing Intercultural Understanding (IU) To overcome personal and systemic stereotypes and biases IU promotes reflection on: • one’s own identity, family history, and background. • the history, politics and economics of both one’s own country and the countries in which they engage. EIESL

13. Challenging stereotypes and assumptions ‘Well for one thing we don’t have a problem with water, everyone in the U.S. has access to clean water’ US cities along the northern US-Mexico border have some of the poorest regions in the U.S.: • four of the seven poorest cities and five of the poorest counties in the U.S. are located in Texas along the Mexican border. • US border counties have experienced an increase in unemployment and a decrease in per capita income over the past 30 years P 733 Pan American Health Organization. Health in the Americas, 2007. Volume II-Countries. United States-Mexico Border Area.   http://www.paho.org/hia/archivosvol2/paisesing/United%20States%20Mexico%20Border%20Area%20English.pdf

14. Challenging stereotypes and assumptions, cont. Mexico’s border states have lower unemployment rates and higher wages compared to other regions of the country. Mexico’s border states also have the lowest poverty rates and highest literacy rates in the country Pan American Health Organization. Health in the Americas, 2007. Volume II-Countries. United States-Mexico Border Area.   http://www.paho.org/hia/archivosvol2/paisesing/United%20States%20Mexico%20Border%20Area%20English.pdf

15. Versión: 19 de Marzo 2010 BORRADOR

17. What might be the implications of continuing to reinforce “how bad the problem is” is in a global health setting? How do we balance the ‘deficit model’ of approaching public health problems?

18. “Tijuana is the corner where dreams collide and bounce back from a country in need of peace” Reacciona Tijuana

19. Promoting intercultural understanding • How can we better train ourselves to be conscious of our assumptions and the things we take for granted? • How can faculty teach students important competencies without focusing solely on a deficit-oriented model or reinforcing paternalistic attitudes? • What are the effects of our presence in a community? What are we taking with us when we leave? • What are we leaving behind? EIESL

20. Balance and reciprocity 1. What are some important things to consider when engaging in a partnership with a community abroad? 2. How can we ensure we are communicating effectively and respectfully? 3. How can we avoid being paternalistic or alienating? 4. How can we ensure that people feel they have a safe space to be heard and that their needs are being met? 5. How do we (both as students and as faculty) understand our role in communities? EIESL

21. Acknowledgements: Dr. Dena Plemmons Assistant Professor Department of Anthropology, Research Ethicist, UCSD Research Ethics ProgramDr. Michael KalichmanDirector, UCSD Research Ethics Program

22. Resources • Resources for Research Ethics Education http://research-ethics.net/ • Ethics of International Engagement and Service-Learning Projecthttp://ethicsofisl.ubc.ca/ • UCSD Research Ethics Program http://ethics.ucsd.edu/research.html • UCSD University Ethics Center http://ethics.ucsd.edu/index.html • The Myth of Democracy

24. REFERENCE SLIDES

25. Closing thoughts • Gaining multiple perspectives on global research ethics dilemmas or issues is critical. • How we describe “at home” our interactions or observations with other individuals, agencies and structures “over there” has consequences. • Cultivating cultural relativism is a process, as is incorporating it into the way we conduct our research

26. Good read SAVAGE CAPITALISM AND THE MYTH OF DEMOCRACY: Latin America in the Third Millennium Michael Hogan 2009

27. Over sixty million yearly north-bound crossings--San Diego County/Baja California border annually (SANDAG, 2006) • 63,000 persons cross from Tijuana to San Diego to work every day (COLEF, 2007)

28. US-Mexico Border Region Source: Pan American Health Organization Border Region ~3000 km (1,863 miles) North/South 100 km (62 miles) CA/Baja CA 322 km (200 miles)

29. Proportion of Latinos varies by region of the US-Mexico border.… California 36% Texas 86%

30. If the U.S. side of the border became the 51st state…… The region would rank: • Last in access to care • Last in per/capita income • First in # of school children living in poverty & uninsured 2005 American Community Survey, US Census Bureau

31. Mexican border states • Economically prosperous cities are at the northern border of Mexico (Tijuana is the eighth largest city in Mexico) • Migration from other parts of Mexico and Latin America challenge infrastructure development & maintenance (i.e. water, sewage, electricity)

32. What we share • Transborder and migratory populations • Environmental pollutants (air, sewage, pesticides) • Economic and cultural interaction and benefit • Chronic and Infectious--Double burden of disease • Populations with dual health care coverage

33. The changing landscape of health care access…U.S. insurance companies offer medical and dental coverage in Tijuana “Since 2000, several private insurance companies and at least one employer group have developed such plans, which cover an estimated 150,000 California workers who use Mexican medical facilities near the border.” Wallace, S.P., Mendez-Luck C., Castañeda, X. (2009). Heading South: Why Mexican Immigrants in California Seek Health Services in Mexico. Medical Care, 47(6), 662-669.

35. Binational coordination and Research

36. Patient-initiated changes to antiretroviral therapy (ART) regimen among Latinos living in the U.S.-Mexico border region ___________________________ M.L. Zúñiga, F. Muñoz, J Kozo, E. Blanco, R. Scolari Among 230 HIV+ Latinos on ARVs: ► 77% Male ► Average age 41 years ► 93% born in Mexico No significant differences between U.S. and Mexican residents ► ~50% made at least one round trip border crossings in the last 6 months (average 15 roundtrips) ► 65% reported medical coverage in US or Mexico (24% both countries)

37. _________________________________

38. Am J Public Health. 2010 Feb 10. [Epub ahead of print]

39. “Condoneta” HIV-prevention information & condom distribution van Tijuana, Baja California, México– sponsored by CENSIDA (primary Mexican Federal HIV/AIDS Agency)

40. Patronato Pro - COMUSIDA Tijuana, A.C. County of San Diego, Health and Human Services Agency Public Health Services Collaborating Institutions