EDITORIAL Global Health Fieldwork Ethics: Mapping the Challenges

Volume 21/1, June 2019, p 1 – 5

Rachel Hall-Clifford, David G. Addiss, Robert Cook-Deegan, and James V. Lavery

Introduction

As Paul Farmer has observed, “global health remains a collection of problems rather than a discipline.”¹ An exclusive focus on technical problems and the quest for solutions obscures how global health is actually enacted and implemented through fieldwork. In this special section, we consider “fieldwork” broadly to include any on-the-ground research or program design, implementation, or evaluation conducted by or with local participants and communities, which often involves collaborators from abroad.

At the very heart of global health fieldwork, relationships—real-world connections among people and across institutions—give meaning to the goals and projects of this multidisciplinary field. Those relationships inspire us and compel us to act to reduce health inequalities and promote health and social justice. Yet, in working toward these goals, we must more fully consider the asymmetries embedded in global health practice—imbalances of power, access to resources, and decision making—many of which come to a head in the context of fieldwork.

The dynamics of global health fieldwork and the nature of the relationships that emerge through it have been conspicuously underexplored in global health scholarship. This special section of Health and Human Rights Journal highlights the ways in which participants interact and experience the work of global health. It is an effort to shed light on some of the ethical challenges of fieldwork and to explore terrain that might lead to practical ethical guidance for global health fieldworkers.

Research regulations and traditional research ethics fall short in helping navigate many of the challenges that arise in global health practice. The US Federal Policy for the Protection of Human Subjects, first adopted in 1991 and known as the Common Rule, establishes procedures and regulations for research involving human participants and builds on the 1979 Belmont Report ethical principles of respect for persons, beneficence, and justice.² Most of the ethical issues raised in this special section fall outside the scope of the Common Rule, which has become the de facto international standard, due in part to the power and reach of US federal funding. The dominance of the Common Rule paradigm allows for adherence to procedural ethics without attending to many broader ethical questions that emerge from global health fieldwork, such as guidance on financing, “ownership” of programs and appropriate engagement with stakeholders, and, increasingly, data sharing and the implications of big data. Moreover, there is very little emphasis on institutional or organizational ethics in global health research, which belies the centrality of interpersonal and institutional relationships that are at the heart of the global health enterprise. These relationships are shaped by inherent power imbalances between high-income and low- to middle-income countries that are not fully acknowledged for their deep influences on how we think, work, and evaluate success in global health. Yet it is precisely through these relationships that the relevance and value of the right to health becomes tangible.

As a multidisciplinary field, global health does not have clear or consistent guidance for fieldwork ethics. Perhaps our unshakable belief in our shared mission to improve health and the lives of marginalized populations across the globe has made us too complacent about the ethical stakes involved in the complex interpersonal and institutional relationships that fuel all global health efforts. This has significant implications for human rights—the very ideals we seek to promote—since it has allowed breaches of ethics, inadvertent or otherwise, to go underreported and under-examined. Local collaborators, project communities, and fieldworkers themselves are made vulnerable by the gap between procedural ethics and the complex ethical realities of fieldwork in global health.

Workshop on Ethically Managing Global Health Fieldwork Risks

In April 2018, a group of 29 global health researchers and practitioners from various disciplines, institutions, and career phases—from students to CEOs—came together for the Workshop on Ethically Managing Global Health Fieldwork Risks held at Agnes Scott College in Decatur, Georgia, USA. The idea for the workshop initially emerged through informal, serendipitous conversations. Each of us has worked in global health, and we have experienced situations in the field that led us to question our own actions and to seek ethical guidance, which was largely absent from the global health literature (see Hall-Clifford and Cook-Deegan; Addiss and Amon; and Graham, Lavery, and Cook-Deegan in this issue). We came to realize that our varied experiences spoke to shared encounters with the gap between ethical principles and the complexities of real-world fieldwork.

The primary objective of the two-day workshop was to provide a place to consider fieldwork experiences and ethical challenges. The format involved each participant sharing a short case example from their own work that presented particular ethical questions, followed by discussion. Through creating opportunity for dialogue, we wanted to begin mapping the fieldwork challenges that participants had experienced. While we recognized that an exhaustive taxonomy of every ethical challenge and situation that global health fieldworkers face may not be possible, we wanted to do more than throw our hands up in despair at the complexity.

What emerged during the workshop was a rare opportunity to share fieldwork experiences, including mistakes and vulnerabilities, across disciplinary and researcher-practitioner boundaries. Topics covered by participants’ case examples included power dynamics within global health funding and agenda setting; inequalities among foreign and local global health staff; the limits of consent, participant recruitment, data security, and resource allocation in contexts of crisis; challenges in training and supporting global health students; issues in global health photography and communication; personal and moral injury to global health fieldworkers; gender-based violence in the field; and organizational and institutional roles in ensuring ethical practices. Although far from exhaustive, these workshop topics suggest a preliminary taxonomy of ethical issues that have largely evaded serious attention in the traditional global health ethics guidance documents.

Many of the discussions also signaled broader ethical challenges within the paradigms through which we conceptualize and conduct global health fieldwork, such as the common practice of having foreign fieldworkers parachute in for short periods of time and expectations of ethical on-the-fly decision making. Another theme centered on the challenges and shortcomings of our efforts to provide adequate preparation for students to participate in fieldwork, particularly in light of the increased pressure on universities to compete for students by offering meaningful work experiences early in training programs. The expectation that students should engage in the field early coupled with the dearth of cohesive practical ethics in global health can lead to terrible outcomes for students—who are often left without appropriate support before, during, or after fieldwork—and their local hosts.

The most salient and pressing theme that arose from the workshop was gender-based violence in the context of fieldwork and the lack of open discussion about it in global health. Nearly every woman in the room had been touched by gender-based violence, and many of the men were shocked at how pervasive an issue this is for their colleagues. We explored the challenges that women fieldworkers and local participants face as well as the reality that global health workers can be the perpetrators as well as the victims of gender-based violence during fieldwork.

In the special section

The articles in this special section, which emerged following the workshop, present a wide array of global health fieldwork ethics challenges, which powerfully illustrate the ways in which global health has not adequately addressed on-the-ground ethics. Above all, the papers illustrate that unexpected situations and encounters frequently occur during fieldwork, often with problematic outcomes. Rachel Hall-Clifford and Robert Cook-Deegan highlight risks associated with fieldwork conducted in dangerous places and illustrate how failures to navigate those risks can lead to immense harm to community participants and fieldworkers themselves. David G. Addiss and Joseph J. Amon further explore unintended harms in global health and critically examine our individual and institutional responses to situations that call for apology and reparation.

Another key theme emerging from the contributions to this special section is the insufficiency of training for global health fieldworkers on the dangers and realities of fieldwork. Aimee Lorraine C. Capinpuyan and Red Thaddeus D. Miguel explore the challenges of participating as medical interns in a program to extend the reach of health services in the Philippines, and Jacob Roble et al. describe the efforts of a student-led group to improve preparation and accountability for undergraduate short-term global health experiences within the university context. Beyond their time as students, ongoing ethics training and support is vital but often absent for global health professionals. Izraelle McKinnon et al. describe the outcomes of human rights training for staff working in global health projects, highlighting a lack of clarity around how current training on ethics and human rights principles is acted on in the field. While we must support individual fieldworkers in making ethical decisions in the field throughout their careers, we must also further incorporate ethics into our institutional norms and protocols. In his commentary, David Ross describes efforts at the Task Force for Global Health to further institutionalize ethical thinking at every level.

Across global health, the representation of global health project participants and communities in publications and publicity can underscore the deep power dynamics embedded in the field. Aubrey Graham et al. examine these power dynamics through the techniques and use of photography in global health fieldwork. Sharing data fairly and responsibly with participating communities presents further ethical challenges. Alyssa Mari Thurston et al. explore the lack of ethical guidance in communicating study results to participants and communities through an analysis of breastmilk biomonitoring studies, pointing out a dearth of meaningful engagement with these stakeholders to shape ethical norms of practice and guidelines. Jennifer Mootz et al. expand the discussion of ethical dissemination of results in their consideration of gender-based violence in conflict settings, in which they question the ways in which to best protect individual participants while disseminating data to communities and entities which might help alleviate violence.

Finally, while gender-based violence has been lifted up as a central concern for global health, particularly in relation to universal health coverage, its negative impact in global health fieldwork is inadequately recognized and remains largely unaddressed. There are key challenges both in how to ethically study and work to end gender-based violence and in how to support global health fieldworkers who experience it. Shana Swiss et al. further explore the ethical implications of gathering data on the impact of conflict on women. Arachu Castro describes her long-term work in documenting obstetric violence against women in Latin America and articulates some of the challenges of her dual roles as global health researcher and activist. Further elaborating on the theme of insufficient training, Corey McAuliffe et al. present data on the experiences of female graduate students in global health, including experiences of gender-based discrimination and violence. In her commentary, Rachel Hall-Clifford shares experiences of sexual harassment and assault during global health fieldwork, recognizing that such accounts are largely absent from the fieldwork literature and discussions within the field. Finally, the special section includes a joint statement against gender-based violence in global health fieldwork by many participants of the 2018 workshop. Global health must take action to end this widespread but typically invisible violation of rights during fieldwork.

Steps forward

The articles in this special section point to many perils—practical, ethical, and moral—in global health fieldwork. Yet we believe they also point to important points of entry to improve our ethical practices and to develop clear guidance and support for fieldworkers in global health. Across the field, efforts are underway to address our ethical shortfalls. Training is being improved by the sharing of lessons learned through collective groups, such as the Consortium of Universities for Global Health, and the opportunity for deep engagement with the experiences of fieldworkers, including through resources such as the Human Engagement Learning Platform for Global Health. Institutions are also moving toward broadening their scope of ethical responsibility, such as the Focus Area for Compassion and Ethics at the Task Force for Global Health, and organizing action to increase equity within global health, such as the work of Women in Global Health. These emerging projects and programs are hopeful signs that our unexamined bureaucratic processes and norms of practice are being disrupted in favor of a deeper ethical reckoning. As many of the articles in this special section illustrate, human rights violations—of local participants, project communities, and fieldworkers—occur within the context of global health fieldwork. It is our responsibility as a field, particularly one dedicated to the promotion of health as a human right, to establish clear and practical ethical guidance to mitigate and eliminate these violations and to ensure that the relationships we build are ones of partnership and equality.

Acknowledgments

The authors thank Agnes Scott College, the Task Force for Global Health, and the Emory University Rollins School of Public Health for their co-sponsorship of the 2018 Workshop on Global Health Fieldwork Ethics. We extend particular gratitude to Elizabeth Kiss, who as President of Agnes Scott College energetically supported this project and lent her expertise as an ethicist to the workshop. We also thank Arthur Kleinman, who delivered the 2018 Agnes Scott College O.C. Hubert Public Lecture, “Caregiving: What Distinguishes the Social Medicine Approach to Global Health,” as the inaugural workshop event and provided invaluable insight as a participant in the workshop.

Rachel Hall-Clifford, MPH, MSc, PhD, is an associate professor of anthropology and public health at Agnes Scott College in Georgia, USA, and director of the National Association for the Practice of Anthropology – Occupational Therapy Field School in Guatemala.

David G. Addiss, MD, MPH, is director of the Focus Area for Compassion and Ethics at the Task Force for Global Health in Decatur, USA.

Robert Cook-Deegan, MD, is a professor at the School for the Future of Innovation in Society, and at the Consortium for Science, Policy and Outcomes at Arizona State University, USA.

James V. Lavery, PhD, is Conrad N. Hilton Chair in Global Health Ethics and a professor in the Hubert Department of Global Health, Rollins School of Public Health, and Center for Ethics at Emory University in Atlanta, USA.

Please address correspondence to Rachel Hall-Clifford. Email: rhallclifford@agnesscott.edu.

Competing interests: None declared.

Copyright © 2019 Hall-Clifford, Addiss, Cook-Deegan, and Lavery. This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits unrestricted non- commercial use, distribution, and reproduction in any medium, provided the original author and source are credited.

References

Farmer, “Preface,” in P. Farmer, J. Y. Kim, A. Kleinman, and M. Basilico (eds), Reimagining global health: An introduction(Berkeley: University of California Press, 2013).
US Department of Health and Human Services, Office for Human Research Protection, Federal Policy for the Protection of Human Subjects (“Common Rule”). Available at https://www.hhs.gov/ohrp/regulations-and-policy/regulations/common-rule/index.html.