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Ethically Managing Risks in Global Health Fieldwork: Human Rights Ideals Confront Real World Challenges Rachel Hall-Clifford and Robert Cook-Deegan

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Ethically Managing Risks in Global Health Fieldwork: Human Rights Ideals Confront Real World Challenges Rachel Hall-Clifford and Robert Cook-Deegan r. hall-clifford and r. cook-deegan / global health fieldwork ethics and human rights, 7-18 Ethically Managing Risks in Global Health Fieldwork: Human Rights Ideals Confront Real World Challenges rachel hall-clifford and robert cook-deegan Abstract Global health is an interdisciplinary field engaged with implementation of the human right to health, yet ethical dimensions of the on-the-ground realities of this work have been underexplored. Fieldwork in global health produces knowledge through both primary research and the lessons of practical program implementation. Much of this essential knowledge, which often documents health disparities and other human rights abuses, arises from work in dangerous contexts. Work in such environments entails risk to all participants in the global health enterprise, both local and foreign, but affects them differently. The risks of ethical fieldwork must be considered not only for the well-being of project participants and fieldworkers but also in light of how they shape and constrain global health research and program implementation. Drawing on case examples from the authors’ fieldwork, this article marks an effort to begin disentangling the realities of risks in the field and the responsibility borne by the fieldworker to undertake ethical action, recognizing that decisions are often made without established protocols or the immediate availability of guidance from colleagues. We call for further engagement within global health on ethical issues distinctive to the complex and dangerous places in which the promise of a right to health is enacted in the real world. 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. 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. Please address correspondence to Rachel Hall-Clifford. Email: [email protected]. Competing interests: None declared. Copyright © 2019 Hall-Clifford and Cook-Deegan. 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. JUNE 2019 VOLUME 21 NUMBER 1 Health and Human Rights Journal 7 r. hall-clifford and r. cook-deegan / Global health fieldwork ethics and human rights, 7-18 Introduction expose local partners, participating communities, and fieldworkers themselves to unforeseen and The cobblestones up the hill to “my” family’s house in disastrous outcomes. Fieldwork in global health, a highland Guatemalan town always felt satisfying under my feet as I walked homeward in the late rooted in the advancement of health as a human afternoons. Alternately warmed by the sun or slick right, is intended to produce knowledge through with rain depending on the season, they led home, both primary research and the empirical lessons past friends and neighbors to be greeted along the learned through program implementation. Much way. I reveled in the feeling of belonging that marks of this knowledge—whether illustrating health dis- accomplishment as a fieldworker. The physical parities, documenting abuses committed against exertion of the climb was gratifying after a day spent on the far less concrete efforts of interviewing, people, or describing factors that undermine the observing, and doing surveys about children’s access capabilities needed to lead a fully realized human to primary health care services. The members life—is gained by gathering data in dangerous of the family with whom I lived energized me, places. This work entails risk to global health field- quickening my steps toward the warmth of the stove workers and to those around them. Those risks are and evening conversations. They were indigenous, often confronted with little or no training, based mobilized, and brilliant. on an implicit assumption that dangers can be suc- More than 20 years after the Guatemalan peace cessfully and ethically navigated by the fieldworker. accords ended a decades-long genocidal civil war, Failures to do so have no formal place in reporting rates of ethnic violence remain high. My adopted global health project outcomes, and community family was torn apart when an adult son was participants and fieldworkers can be left to grapple assassinated for being an activist. His body bore with the aftermath without systematic support. the testament that the indigenous must know their place—his tongue cut out, his brain bashed in as Beyond an unfulfilled responsibility for the a visceral message to silence those who challenge well-being of fieldworkers and project collaborators the status quo. The family spent a frantic evening and communities, global health must also account searching for him when it became apparent he had for the ways in which the knowledge that informs been taken, their feet flying over those same well- goal setting and principles of practice is shaped by worn cobblestones. They found him clinging to life the risks and ethical challenges of fieldwork. in a ditch at dawn; there was no time to save him, only to glimpse his incredible suffering and say An exhaustive taxonomy of the practical and inadequate goodbyes. ethical challenges of fieldwork is infeasible, given the wildly diverse situations in which global health Following the assassination, I received a few and human rights workers may find themselves. anonymous threatening voicemails and stayed Yet anticipating potential risks to fieldworkers and physically away, an option I was very aware of their project communities can help mitigate them. having but which the family did not. Years of grief Risks faced by fieldworkers arise through the possi- and indecision followed. The family ultimately decided not to pursue prosecution of the murder in bility of causing harm to others and the possibility the face of futility and fear of reprisals. Beyond my of harm to fieldworkers themselves. Firsthand ac- sadness at the loss of my friend, I feel guilt, however counts of fieldwork challenges have begun to emerge misplaced or even self-aggrandizing, that my in the literature.1 In this article, we share examples projects and shared passion for indigenous causes from our own work in an effort to illustrate some of may have helped invite trouble. My beloved daily the gaps between ethical ideals and realities in the journey to their door, when reconsidered, becomes a pale flag marking with each wave an invitation to field. We focus on the experiences of fieldworkers in deadly scrutiny. navigating the appropriate level of engagement and activism in project communities, implementation Though an extreme example, this fieldwork of informed consent in contexts of crisis, routine experience of the first author illustrates that well-in- dangers in the field, and grappling with self-iden- tentioned and carefully implemented fieldwork can tity and morals in the field. We propose a global 8 JUNE 2019 VOLUME 21 NUMBER 1 Health and Human Rights Journal r. hall-clifford and r. cook-deegan / global health fieldwork ethics and human rights, 7-18 health ethics practice framework to systematically risks might influence outcomes, or when experi- (1) anticipate the ethical issues likely to arise in ences might be used to educate future fieldworkers. fieldwork, (2) incorporate practical fieldwork skills Important emphasis has been made in recent years and applied ethics into global health training, and on the dissemination of research findings within (3) share ethics-related lessons learned from field- project communities, though important questions work in professional publications and discourse. about how to do so safely and ethically remain (see This practice framework can help bridge the gap Mootz et al. in this issue). between particular field experiences and the ab- Public health ethics tend toward the teleolog- stract principles of research ethics through a focus ical, even utilitarian, as we attend to maximizing on applications to real world contexts. good and minimizing harm for populations as a collective.4 This tendency seems also to have shaped Background approaches to fieldwork, with vital, life-saving ends sometimes justifying less-than-ideal means when it Global health evidence and ethics comes to research and implementation in dangerous Global health is an interdisciplinary field drawing contexts. By nature, global health and human rights from academic disciplines across human rights, empiricism must cross geopolitical and cultural medicine, and the natural and social sciences. Per- boundaries.5 Global health also confronts sociocul- haps due to this interdisciplinarity, global health has tural differences and substantial power imbalances not settled on a coherent, cross-cutting set of theo- between fieldworkers and community participants.6 ries to produce evidence through a formal inductive Significant work in the past two decades has been process as in other academic disciplines.2 From an- dedicated to improving methods of community par- other interdisciplinary approach, human rights has ticipatory involvement in global health programs and grown from its roots in activism and law to include establishing meaningful
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