Skip to main content
SpringerLink
Log in

Trust, Conflict, and Engagement in Occupational Health: North American Epidemiologists Conduct Occupational Study in Communities Affected by Chronic Kidney Disease of Unknown Origin (CKDu)

Current Environmental Health Reports Aims and scope Submit manuscript

Cite this article

Abstract

Purpose of Review

Science has been used as a tool of colonialism, and aspects of science privilege researchers in the global North (USA and Europe). The environmental justice and worker health movements in the USA and globally have influenced aspects of how occupational and environmental health research is conceived and conducted so that it is more equitable. This review provides a case example of research in the area of chronic kidney disease of unknown origin (CKDu).

Recent Findings

In the present work, the author describes aspects of community-based participatory research and anti-colonial research that influence a current occupational epidemiology study of CKDu in Mesoamerica among workers in agriculture and non-agricultural industries. The research includes investigators from numerous countries in the global North and South and funding from the US government and corporations.

Summary

The role of industry in science and the misuse of science by corporate interests remain substantial threats to research integrity. The ability of researchers to navigate potentially conflicting interests with industry and workers, and establish trust within and outside the scientific community, is essential for sustained engagement in longitudinal studies. Trust is about human relationships. It takes time and effort to build and is essential for creating equitable, empowering research relationships.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Notes

  1. This manuscript was written from a short talk prepared in response to a request by organizers of Chronic Kidney Disease in Agricultural Communities, a workshop hosted by the National Institute of Environmental Health Sciences and the National Institute of Diabetes and Digestive and Kidney Diseases (NIEHS and NIDDK) in Bethesda, MD, on June 26, 2018.

References

Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

  1. Michaels D. Doubt is their product: how industry’s assault on science threatens your health. Oxford; New York: Oxford University Press; 2008.

    Google Scholar 

  2. Moss R. Nuclear Lab Employees With Radiation-Linked Cancers Have Been Forced to Wait Years for Potential Benefits. In: Pacific Standard. https://psmag.com/social-justice/nuclear-lab-workers-wait-a-decade-for-benefits. Accessed 8 Jun 2019

  3. Editors H com Agent Orange. In: HISTORY. https://www.history.com/topics/vietnam-war/agent-orange-1. Accessed 8 Jun 2019

  4. Monforton C. Weight of the evidence or wait for the evidence? Protecting underground miners from diesel particulate matter. Am J Public Health. 2006;96:271–6.

    Article  Google Scholar 

  5. Morris J. A toxic legacy. Slate; 2015.

  6. Ozonoff D, Boden LI. Truth and consequences: health agency responses to environmental health problems. Sci Technol Hum Values. 1987;12:70–7.

    Google Scholar 

  7. Russell D, Lewis S, Keating B. Inconclusive by design: waste, fraud and abuse in federal environmental health research. Environmental Health Network and the National Toxics Campaign. 1992.

  8. Bullard RD, editor. The quest for environmental justice: human rights and the politics of pollution. 1st ed. San Francisco: Sierra Club Books; 2005.

    Google Scholar 

  9. Pellow DN. Resisting global toxics: transnational movements for environmental justice. Cambridge: MIT Press; 2007.

    Book  Google Scholar 

  10. Executive Order 12898, actual text. http://www.ejnet.org/ej/execorder.html. Accessed 15 Apr 2019

  11. Shufro J. The COSH Movement and Right to Know. In: Encyclopaedia of Occupational Health & Safety. http://www.iloencyclopaedia.org/part-iii-48230/resources-institutional-structural-and-legal/community-level/community/the-cosh-movement-and-right-to-know. Accessed 15 Apr 2019

  12. Zachek CM, Rubin SM, Scammell MK. Whatever works: legal tactics and scientific evidence in environmental justice cases. Environ Justice. 2015;8:20–5.

    Article  Google Scholar 

  13. Institute of Medicine. Toward Environmental Justice: Research, Education, and Health Policy Needs. Washington, DC: National Academy Press; 1999.

    Google Scholar 

  14. Shepard P, Northridge ME, Prakash S, Stover G. Preface: advancing environmental justice through community-based participatory research. Environ Health Perspect. 2002;110(S2):139–40.

    Article  Google Scholar 

  15. Community Engagement and Research Translation. In: National Institute of Environmental Health Sciences. https://www.niehs.nih.gov/research/supported/centers/srp/outreach/index.cfm. Accessed 15 Apr 2019

  16. CES4Health. http://www.ces4health.info/. Accessed 15 Apr 2019

  17. Progress in Community Health Partnerships: Research, Education, and Action | JHU Press. https://www.press.jhu.edu/journals/progress-community-health-partnerships-research-education-and-action. Accessed 15 Apr 2019

  18. Gateways: International Journal of Community Research and Engagement. https://epress.lib.uts.edu.au/journals/index.php/ijcre. Accessed 15 Apr 2019

  19. New Solutions: A Journal of Environmental and Occupational Health Policy. In: SAGE Journals. /home/new. Accessed 15 Apr 2019

  20. Community Health Studies. http://communityhealthstudies.cdph.ca.gov/. Accessed 15 Apr 2019

  21. Scammell MK, Howard GJ. Is a Health Study the Answer for Your Community? A Guide for Making Informed Decisions. 2013. https://www.bu.edu/sph/about/departments/environmental-health/research/research-groups-and-centers/superfund-research-program-at-boston-university/community-engagement-core/health-studies-guide/. Accessed 29 Aug 2019

  22. CDC - Environmental Public Health Tracking: About The Program. 2019. https://www.cdc.gov/nceh/tracking/about.htm. Accessed 15 Apr 2019

  23. Partnerships for Environmental Public Health Annual Meeting. In: National Institutes of Environmental Health Sciences. https://www.niehs.nih.gov/news/events/pastmtg/2018/peph_annual_meeting/index.cfm. Accessed 26 Apr 2019

  24. Misztal BA. Trust in modern societies: the search for the bases of social order. Cambridge: Polity Press; Blackwell Publishers, Inc; 1996.

    Google Scholar 

  25. Jasanoff S, editor. States of knowledge: the co-production of science and social order, transferred to digital print. London: Routledge; 2010.

    Google Scholar 

  26. Clapp R. From Critical Science to Solutions: The Best of Scientific Solutions. 1st ed; 2017. https://doi.org/10.4324/9781315231631.

    Book  Google Scholar 

  27. ANNUAL REPORT: SEPTEMBER 2015 – SEPTEMBER 2016: | NIEHS-WHO Collaborating Centre for Environmental Health Sciences. National Institute of Environmental Health Sciences

  28. Weiner DE, McClean MD, Kaufman JS, Brooks DR. The Central American epidemic of CKD. Clin J Am Soc Nephrol. 2013;8:504–11.

    Article  Google Scholar 

  29. Correa-Rotter R, Wesseling C, Johnson RJ. CKD of unknown origin in Central America: the case for a Mesoamerican nephropathy. Am J Kidney Dis. 2014;63:506–20.

    Article  Google Scholar 

  30. • Johnson RJ, Wesseling C, Newman LS. Chronic kidney disease of unknown cause in agricultural communities. N Engl J Med. 2019;380:1843–52 Recent and comprehensive overview of CKDu.

    Article  Google Scholar 

  31. Tatapudi RR, Rentala S, Gullipalli P, Komarraju AL, Singh AK, Tatapudi VS, et al. High prevalence of CKD of unknown etiology in Uddanam, India. Kidney Int Rep. 2019;4:380–9.

    Article  Google Scholar 

  32. Rajapakse S, Shivanthan MC, Selvarajah M. Chronic kidney disease of unknown etiology in Sri Lanka. Int J Occup Environ Health. 2016;22:259–64.

    Article  Google Scholar 

  33. Ganguli A. In reply to ‘Kidney Disease of Unknown Cause in Agricultural Laborers (KDUCAL) Is a Better Term to Describe Regional and Endemic Kidney Diseases Such as Uddanam Nephropathy’. Am J Kidney Dis. 2017;69:552–3.

    Article  Google Scholar 

  34. Ordunez P, Martinez R, Reveiz L, Chapman E, Saenz C, Soares da Silva A, et al. Chronic kidney disease epidemic in Central America: urgent public health action is needed amid causal uncertainty. PLoS Negl Trop Dis. 2014;8:e3019.

    Article  Google Scholar 

  35. Pan American Health Organization. Epidemic of chronic kidney disease in agricultural communities in Central America. Case definitions, methodological basis and approaches for public health surveillance. 2016;64

  36. Torres C, Aragón A, González M, López I, Jakobsson K, Elinder C-G, et al. Decreased kidney function of unknown cause in Nicaragua: a community-based survey. Am J Kidney Dis. 2010;55:485–96.

    Article  Google Scholar 

  37. Peraza S, Wesseling C, Aragon A, Leiva R, García-Trabanino RA, Torres C, et al. Decreased kidney function among agricultural workers in El Salvador. Am J Kidney Dis. 2012;59:531–40.

    Article  Google Scholar 

  38. Wesseling C, Aragón A, González M, Weiss I, Glaser J, Rivard CJ, et al. Heat stress, hydration and uric acid: a cross-sectional study in workers of three occupations in a hotspot of Mesoamerican nephropathy in Nicaragua. BMJ Open. 2016;6:e011034.

    Article  Google Scholar 

  39. • Gallo-Ruiz L, Sennett CM, Sánchez-Delgado M, et al. Prevalence and risk factors for CKD among brickmaking workers in La Paz Centro, Nicaragua. Am J Kidney Dis. 2019. https://doi.org/10.1053/j.ajkd.2019.01.017Important occupational study identifying high prevalence of CKDu and associated risk factors among non-agricultural workers.

    Article  Google Scholar 

  40. Wijkström J, Leiva R, Elinder C-G, Leiva S, Trujillo Z, Trujillo L, et al. Clinical and pathological characterization of Mesoamerican nephropathy: a new kidney disease in Central America. Am J Kidney Dis. 2013;62:908–18.

    Article  Google Scholar 

  41. López-Marín L, Chávez Y, García XA, et al. Histopathology of chronic kidney disease of unknown etiology in Salvadoran agricultural communities. MEDICC Rev. 2014;16:49–54.

    PubMed  Google Scholar 

  42. Wijkström J, González-Quiroz M, Hernandez M, Trujillo Z, Hultenby K, Ring A, et al. Renal morphology, clinical findings, and progression rate in Mesoamerican nephropathy. Am J Kidney Dis. 2017;69:626–36.

    Article  Google Scholar 

  43. Ramirez-Rubio O, McClean MD, Amador JJ, Brooks DR. An epidemic of chronic kidney disease in Central America: an overview. Postgrad Med J. 2013;89:123–5.

    Article  Google Scholar 

  44. Wesseling C, Crowe J, Hogstedt C, Jakobsson K, Lucas R, Wegman DH, et al. Resolving the enigma of the mesoamerican nephropathy: a research workshop summary. Am J Kidney Dis. 2014;63:396–404.

    Article  Google Scholar 

  45. Ramirez-Rubio O, Brooks DR, Amador JJ, Kaufman JS, Weiner DE, Scammell MK. Chronic kidney disease in Nicaragua: a qualitative analysis of semi-structured interviews with physicians and pharmacists. BMC Public Health. 2013. https://doi.org/10.1186/1471-2458-13-350.

  46. Laws RL, Brooks DR, Amador JJ, et al. Changes in kidney function among Nicaraguan sugarcane workers. Int J Occup Environ Health. 2015;21:241–50.

    Article  Google Scholar 

  47. Ramírez-Rubio O, Amador JJ, Kaufman JS, et al. Urine biomarkers of kidney injury among adolescents in Nicaragua, a region affected by an epidemic of chronic kidney disease of unknown aetiology. Nephrol Dial Transplant. 2016;31:424–32.

    Article  Google Scholar 

  48. Laws RL, Brooks DR, Amador JJ, et al. Biomarkers of kidney injury among Nicaraguan sugarcane workers. Am J Kidney Dis. 2016;67:209–17.

    Article  CAS  Google Scholar 

  49. Kupferman J, Amador JJ, Lynch KE, et al. Characterization of Mesoamerican nephropathy in a kidney failure hotspot in Nicaragua. Am J Kidney Dis. 2016;68:716–25.

    Article  Google Scholar 

  50. Riefkohl A, Ramírez-Rubio O, Laws RL, et al. Leptospira seropositivity as a risk factor for Mesoamerican nephropathy. Int J Occup Environ Health. 2017;23:1–10.

    Article  CAS  Google Scholar 

  51. Compliance Advisor Ombudsman Annual Report 2016. Office of the Compliance Advisor Ombudsman (CAO)

  52. Research Group for the Study of Chronic Kidney Disease in Central America | SPH | Boston University. In: School of Public Health. https://www.bu.edu/sph/about/departments/epidemiology/research/research-group-for-the-study-of-chronic-kidney-disease-in-central-america/. Accessed 8 Jun 2019

  53. Scammell MK, Senier L, Darrah-Okike J, Brown P, Santos S. Tangible evidence, trust and power: public perceptions of community environmental health studies. Soc Sci Med. 2009;68:143–53.

    Article  Google Scholar 

  54. Michaels D. Addressing conflict in strategic literature reviews: disclosure is not enough: how could disclosure of interests work better in medicine, epidemiology and public health? J Epidemiol Community Health. 2009;63:599–600.

    Article  Google Scholar 

  55. Funk C, Kennedy B. Public confidence in scientists has remained stable for decades: Pew Research Center; 2019.

  56. Lee Rainie. U.S. Public Trust in Science and Scientists. 2017. https://www.pewinternet.org/2017/06/27/u-s-public-trust-in-science-and-scientists/. Accessed 29 Aug 2019

  57. Lo B, Field MJ, Institute of Medicine (U.S.), editors. Conflict of interest in medical research, education, and practice. Washington, D.C: National Academies Press; 2009. Accessed 29 Aug 2019

  58. Draper E. The company doctor: risk, responsibility, and corporate professionalism. New York: Russell Sage Foundation; 2003.

    Google Scholar 

  59. Levins R, Lewontin R. Applied Biology in the Third World: The Struggle for Revolutionary Science. In: “Racial” Economy of Science: Toward a Democratic Future. Bloomington: Indiana University Press; 1993.

    Google Scholar 

  60. Trabanino RG. End-stage renal disease among patients in a referral hospital in El Salvador. Rev Panam Salud Publica. 2002;12:202–6.

    Article  Google Scholar 

  61. Cerdas M. Chronic kidney disease in Costa Rica. Kidney Int. 2005;68:S31–3.

    Article  Google Scholar 

  62. Minkler M, Wallerstein N, editors. Community based participatory research for health. San Francisco: Jossey-Bass; 2003.

    Google Scholar 

  63. Yakima Valley Farm Worker’s Clinic. “Research Participation” Procedure. 2002. https://depts.washington.edu/ccph/pdf_files/Research Participation Procedure_FINAL-02.pdf. Accessed 30 July 2019.

  64. Yale Center for Clinical Investigations. Principles and Guidelines for Community-University Research Partnerships. 2009. https://depts.washington.edu/ccph/pdf_files/Principles_for_U-CPs_09-05-11_-_FINAL.pdf Accessed 30 July 2019.

  65. APHA. Policy Number 200412. 2004–12 Support for Community-Based Participatory Research in Public Health. 2004. https://apha.org/policies-and-advocacy/public-health-policy-statements/policy-database/2014/07/23/14/58/support-for-community-based-participatory-research-in-public-health. Accessed 30 July 2019.

  66. American Indian Law Center. Model Tribal Research Code, With Materials for Tribal Regulation for Research and Checklist for Indian Health Boards. 1999. https://ccph.memberclicks.net/assets/Documents/CBPRCurriculum/AppendixF/mdl-code.pdf. Accessed 30 July 2019.

  67. Mirkinson J Puerto Rico: Disaster Colonialism Strikes Again. In: Haitisolidarity.net. https://haitisolidarity.net/in-the-news/puerto-rico-disaster-colonialism-strikes-again/.

  68. Hart MA, Straka S, Rowe G. Working across contexts: practical considerations of doing indigenist/anti-colonial research. Qual Inq. 2017;23:332–42.

    Article  Google Scholar 

  69. partner | Definition of partner in English by Oxford Dictionaries. In: Oxford Dictionaries | English. https://en.oxforddictionaries.com/definition/partner. Accessed 26 Apr 2019

  70. •• Roy RD Decolonise science – time to end another imperial era. In: The Conversation. http://theconversation.com/decolonise-science-time-to-end-another-imperial-era-89189. Accessed 8 Jun 2019. Very important summary of roots of colonialism, imperialism, and Western science and efforts to decolonize science in the global South and North. Not specific to occupational health.

Download references

Acknowledgments

Thank you Kate Applebaum, David Ozonoff, Les Boden, and Mike McClean for edits and input. Discussions and experience with Juan Jose Amador, Daniel Brooks, David Friedman, Ramon Garcia-Trabanino, Emmanuel Jarquin, Jessica Leibler, and Damaris Lopez contributed to my thinking on this topic.

Funding

Funding sources referred to in the manuscript include the National Institute of Environmental Health Sciences of the National Institutes of Health, Award Number R01ES027584 and the Azucareros del Istmo Centroamericano (AICA), an association of sugar producers in Central America who gave a gift to Boston University. The author was also supported by a JPB Environmental Health Fellowship from by the JPB Foundation and managed by the Harvard T.H. Chan School of Public Health.

Author information

Authors and Affiliations

  1. Department of Environmental Health, Boston University School of Public Health, 715 Albany St., T442 West, Boston, MA, 02118, USA

    Madeleine K. Scammell

Authors
  1. Madeleine K. Scammell
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Madeleine K. Scammell.

Ethics declarations

Conflict of Interest

The author declares that she has no conflict of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

This article is part of the Topical Collection on Occupational Health

Rights and permissions

Reprints and Permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Scammell, M.K. Trust, Conflict, and Engagement in Occupational Health: North American Epidemiologists Conduct Occupational Study in Communities Affected by Chronic Kidney Disease of Unknown Origin (CKDu). Curr Envir Health Rpt 6, 247–255 (2019). https://doi.org/10.1007/s40572-019-00244-6

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s40572-019-00244-6

Keywords

search

Navigation