Ethics and Humanitarian Research: Generating Evidence Ethically (PREA Conference 2019)

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Ethics and Humanitarian Research: Generating Evidence Ethically

Conference held at The Fawcett Event Center,
The Ohio State University, Columbus, Ohio, USA

25-26 March 2019

The PREA research project is funded by Elrha's Research for Health in Humanitarian Crises (R2HC) Programme, which aims to improve health outcomes by strengthening the evidence base for public health interventions in humanitarian crises. The R2HC programme is funded by the UK Government (DFID) and the Wellcome Trust.

Additional funding for the PREA Conference was provided by The Ohio State University Center for Bioethics.

Monday 25 March

Session 1

Welcome and Introduction
O'Mathúna, Dónal; Weisenberger, Jan; Gebreyes, Wondwossen; Melnyk, Bernadette
Description | Abstract | Full Text PDF | Video

Session 2

Keynote 1: Emphasis on Beneficence in Research with Vulnerable Populations: Developing an Assessment Tool for Researchers
Pillai, Veena
Description | Abstract | Full Text PDF | Video

Session 3. Oral Presentations 1: Participant—Researcher Tensions

Paper A. Unexpected and dangerous situations cropped during field research data collection for public Health Research: An Experience Sharing
Sudhakar Narayan, Morankar
Description | Abstract | Full Text PDF | Video

Paper B. 'Nobody wants you here' - Lessons learned (the hard way) in researching medical humanitarian networks in Syria and Ukraine
Roborgh, Sophie

Paper C. Ethical challenges when conducting research in rural, post-conflict areas: experiences from South Sudan
Mugo, Janet Wanjiku
Description | Abstract | Full Text PDF | Video

Session 4

The Post-Research Ethics Analysis (PREA) Project
O'Mathúna, Dónal; Van Bortel, Tine; Upadhaya, Nawaraj; Mulate, Yimtubezinash Woldeamanuel; Hanafiah, Ainul; Martin, Steven
Description | Abstract | Full Text PDF | Video

Session 5

The PREA Tool
O'Mathúna, Dónal
Description | Abstract | Full Text PDF | Video

Session 6. Oral Presentations 2: Gender and Reproductive Health

Paper A. Improving Women's Autonomy in Humanitarian Crises through Qualitative Study
Princewill, Chitu Womehoma
Description | Abstract | Full Text PDF | Video

Paper B. Birth control strategies in disaster prone settings in India
Asirvatham, Packiaraj
Description | Abstract | Full Text PDF | Video

Paper C. Conflicts of Child Marriage in Conflict: Who's story is heard?
Ahmad, Ayesha
Description | Abstract | Full Text PDF | Video

Session 7. Global Initiatives

Paper A. The NIH Fogarty International Center: Advancing health research in humanitarian crises
Mistry, Amit
Description | Abstract | Full Text PDF | Video

Paper B. The Nuffield Council on Bioethics: Contributing to debate on the ethical conduct of research in global health emergencies
Wright, Katharine
Description | Abstract | Full Text PDF | Video

Session 8

Keynote 2: A living laboratory? Ethics and experimentality in humanitarian innovation
Hunt, Matthew
Description | Abstract | Full Text PDF | Video

Tuesday 26 March

Session 9

Keynote 3: Consent complexities, Ebola, and the fine line between collaboration and exploitation in research conducted during public health emergencies
Nouvet, Elysée
Description | Abstract | Full Text PDF | Video

Session 10. Oral Presentations 3: Tools and Assessments

Paper A. Avoiding the Same Mistakes: Understanding and Countering Bias in the Deployment of Artificial Intelligence for Humanitarian Assessments
Kreutzer, Tino
Description | Abstract | Full Text PDF | Video

Paper B. Selected Principles for Ethical Social and Behavior Change Communication
Jacobson, Tom; LeMire Garlic, Nicole
Description | Abstract | Full Text PDF | Video

Paper C. Do approaches to the training and supervision of researchers promote or constrain ethical research practice in humanitarian settings?
Chiumento, Anna
Description | Abstract | Full Text PDF | Video

Session 11

Ethics and Humanitarian Innovation: different approaches and learning from humanitarian research
Skeels, Anna; Hytti, Laura; Guay, Joseph; Harlow, Siobán D.

Session 12

CARE Panel: Research in Humanitarian Crises
Howard, Dana; Pillai, Veena; Lin, Erin; Yotebieng, Marcel
Description | Abstract | Full Text PDF | Video

Session 13. Oral Presentations 4: Communities in Crisis

Paper A. Ethics of conducting research in crisis settings: How does Flint measure up?
Iyioke, Ike Valentine
Description | Abstract | Full Text PDF | Video

Paper B. Research with vulnerable populations in humanitarian crises: ethical challenges and overlooked areas
Barber, Rebecca
Description | Abstract | Full Text PDF | Video

Paper C. Representation of Minorities in Research: A View from the Community
Pyakurel, Sudarshan
Description | Full Text PDF | Video

Session 14. Oral Presentations 5: Researcher Training and Support

Paper A. Ethical Decision-Making in Situations of Extreme Violence: A Case Study of Syria
Robinson, Courtland
Description | Abstract | Full Text PDF | Video

Paper B. Moral distress among disaster responders: what is it, and can we do anything about it? A scoping review.
Gustavsson, Martina
Description | Abstract | Full Text PDF | Video

Paper C. The Experience of Conducting Ethical Review during the Ebola Virus Disease Emergency in Liberia
Tegli, Jemee K.
Description | Abstract | Full Text PDF | Video

Session 15

Keynote 4: Is there an upper limit to the risks that humanitarian research may legitimately visit upon research participants?
Eyal, Nir; Respondent: Passino, Kevin
Description | Abstract | Full Text PDF | Video

Session 16

Closing Remarks
O'Mathúna, Dónal; Nash, Ryan
Description | Abstract | Video

Poster Presentations

A Systematic Review of HIV Risk-Reduction Interventions among Refugees and Asylum Seekers
Ali, Rania

A systematic literature review of the ethics of conducting research in the humanitarian setting
Bruno, William; Parmar, Parveen; Haar, Rohini J.
Description | Abstract | Full Text PDF

How are moral challenges among disaster responders dealt with? The lived experiences of moral challenges and its potential consequences among disaster responders
Gustavsson, Martina
Description | Abstract | Full Text PDF

Children as Therapeutic Orphans in Humanitarian Research
Monzon, Alana
Description | Abstract | Full Text PDF

Ethical challenges when conducting research in rural, post-conflict areas: experiences from South Sudan
Mugo, Janet Wanjiku
Description | Abstract | Full Text PDF

Using Participatory Research to discuss Sexual and Reproductive Health and Rights with Urban Refugee Youth
Vernaelde, Jamie
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Now showing 1 - 20 of 30

Representation of Minorities in Research: A View from the Community
(2019-03) Pyakurel, Sudarshan
Closing Remarks
(2019-03) O'Mathúna, Dónal; Nash, Ryan
Ryan Nash, Director of the Center for Bioethics at The Ohio State University, and Dónal O'Mathúna bring the PREA conference to an add. They express gratitude to the participants, funders and staff who contributed to making the conference a success. They discuss plans for future related initiatives.
The Experience of Conducting Ethical Review during the Ebola Virus Disease Emergency in Liberia
(2019-03) Tegli, Jemee K.
Background: The plethora of scientific and ethical debates on critical issues on conduction of research during emergencies are evolving concerns. The Liberian experience is worth mentioning because the Ebola Virus Disease outbreak changed the fragile ethics review structure. Ethics review committees were overwhelmed with clinical trials applications from 2014 through 2016. Studies needed accelerated reviews which placed ethics committees in edgy position. Method: There were seven trials protocols submitted to two ethics boards in Liberia during the period. The University of Liberia Institutional Review Board and the National Research Ethics Board. Two of these were submitted to the ULIRB and the rest to the NREB. The NREB situated under the Ministry of Health was responsible for all clinical trials while the ULIRB was responsible for all social, behavior and anthropological studies. However, both entities established a collaboration for their members to do joint reviews of clinical trials. Findings: Safety concerns of therapeutics and vaccines candidates and comprehension of the research protocols were daunting. Pre-clinical data prior to review were a challenge. PIs were sometime confuse on where to go, i.e., NREB or the Liberian Medicine and Health Regulatory Authority as both were requirements. PIs were always anxious to initiate studies at all cost as they believe that situation was a window of opportunity. Conclusion: During emergencies, there are salient ethical issues that emerged from ethics review oversight to structure and composition. It is important that trials are accelerated through structured ethics review process once the requirements are met by researchers.
Welcome and Introduction
(2019-03) O'Mathúna, Dónal
This session introduces the PREA conference, Ethics and Humanitarian Research: Generating Evidence Ethically. The conference is opened by Dónal O’Mathúna, Principal Investigator of the PREA (Post-Research Ethics Analysis) research project. The conference is dedicated to the memory of Professor Chesmal Siriwardhana who originally developed the project and died in a traffic accident shortly after the project began. The conference attendees are then welcomed to The Ohio State University by: Prof Jan Weisenberger, Senior Associate Vice President of Office of Research; Prof Wondwossen Gebreyes, Executive Director, Global One Health initiative; and Prof Bernadette Melnyk, Vice President for Health Promotion, University Chief Wellness Officer, Dean and Professor, College of Nursing.
CARE Panel: Research in Humanitarian Crises
(2019-03) Howard, Dana; Pillai, Veena; Lin, Erin; Yotebieng, Marcel
Conversations About Research Ethics (CARE) is a year-long series of faculty-led conversations at The Ohio State University related to the ethical issues that arise from engaging in research. This CARE panel will discuss the distinctive challenges of conducting research during and after humanitarian crises. Disasters and conflicts lead to crises that call for humanitarian responses. How can we know that the type of response being provided is actually effective, timely, and the best use of the available resources? To answer these questions, there has been a recent drive for more research and other evidence-generating activities related to humanitarian aid. But research related to humanitarian aid often involve human participants and thus raise ethical issues of their own. Among the questions we will discuss: How can such research avoid exploitation? What counts as good evidence of efficacy? What sort of risks can we expect research participants to sign up for? Is informed consent possible? Are there conditions under which research is not appropriate and the sole priority should be providing aid? The panel will feature Dr. Veena Pillai (Dhi Consulting and Training, Malaysia). Combining her medical license, research, and interests in humanitarian work, Dr. Pillai works with refugees in Kuala Lumpur, Malaysia. She is affiliated with the University of Malaya through various research projects, and she was a past Global Health Equity Scholar (GHES). She will be joined by Erin Lin (Political Science, The Ohio State University) and Marcel Yotebieng (College of Public Health, The Ohio State University).
The Post-Research Ethics Analysis (PREA) Project
(2019-03) O'Mathúna, Dónal
A series of presentations provide an overview of the PREA project and preliminary findings. An initial scoping review led to the Research Ethics Tool commissioned by the project funders, R2HC. Then a more thorough PREA Systematic Review was conducted, led by Mr Steven Martin of Anglia Ruskin University, UK. The methods and search results are presented, followed by an overview of the 13 Themes identified in the analysis. Then Prof Tine Van Bortel introduced the qualitative research component, beginning with the training for the in-country interviewers. Mr Nawaraj Upadhaya of HealthNet TPO discusses the coordination of the interviews in Nepal, Afghanistan and South Sudan. Dr Yimtu Mulate, Addis Ababa University conducted the interviews in Ethiopia. The qualitative analysis was discussed by Prof Van Bortel and Dr Ainul Hanafiah of the University of East London, UK. The methods of the analysis and the 10 Themes identified were presented, as well as overall conclusions from the findings.
Conflicts of Child Marriage in Conflict: Who's story is heard?
(2019-03) Ahmad, Ayesha
In this presentation, the story of childhood from the vantage point of conflict will be critiqued. Child marriage is often depicted as an event with an emphasis on the physical risks and consequences. Child marriage during conflict is viewed through a gender lens to explain the phenomenon of increased rates of child marriage. However, I will try to reframe child marriage as a process from birth. Such reframing gives space to accommodating the nuances that are experienced with child marriage, particularly in terms of the psychological impact of gender-based violence situated in war-violence, and the nature of a trauma related to being pre-scribed your destiny amid the constant threat of death during war and conflict. The fears and anxieties that surround the point of child marriage will also be explored, looking at the role of storytelling as both enhancing and reducing psychological harms. For example, because child marriage is an open taboo, folk stories and traditional oral-storytelling are embodied by generational memories of marriage whilst still a child. The juxtaposition between the silence of suffering and the extravagance of the meaning of child marriage will also be discussed. Whilst child marriage is forced marriage, erasing the child in the language of this practice also hides other forms of gender-based violence that are yet to be clearly recognised in policy and research as harmful traditional practices such as displaying of sheets post-wedding night or the silencing of voice. To conclude, I call for a more robust and rigorous research that is developed from conflict contexts rather than the application of standardised rights and ethical principles, with the hope that creating new conceptual frameworks will be able to structure the stories that are still lived, yet not known within the evidence-base on child (forced) marriage.
The PREA Tool
(2019-03) O'Mathúna, Dónal
The PREA Tool is the primary practical output from the Post-Research Ethics Analysis (PREA) Project. This presentation shows how it was developed from the findings of the PREA systematic review and qualitative interview analysis. The Tool is available at https://www.preatool.com/. It has two main uses: to allow research teams to explore the ethical issues as they develop, conduct, and review their projects. As the user identifies characteristics of the project, the Tool will provide prompts for various ethical issues that should be considered. It eventually provides suggestions for various types of resources to allow further exploration or training in specific ethical issues. Links are provided to these resources, most of which are available open-access. The second use is a search function to identify resources on specific ethical issues relevant to humanitarian health research and evidence generation. Plans for further development, revision and evaluation of the Tool are presented.
A systematic literature review of the ethics of conducting research in the humanitarian setting
(2019-03) Bruno, William; Parmar, Parveen; Haar, Rohini J.
Background: There has been a recent drive toward professionalization of relief services during humanitarian crises. For example, the Sphere Project, a collaborative initiative among several humanitarian groups, attempted to create minimum standards for humanitarian response. The goal of this systematic review is to identify common ethical issues surrounding research in humanitarian settings published since the initiation of the Sphere Project. Methods: With adherence to PRISMA guidelines for systematic review, we searched PubMed and Scopus for articles published after 1997 (Sphere Project initiation) to 2017 with robust discussions of research ethics in the humanitarian setting. Results: Of the 714 unique articles resulting from our search terms, 29 (4.1%) matched our inclusion criteria. Eighteen (62.1%) were published in 2015 or later and only four were published before 2007. The articles were organized into one or more of five non-mutually exclusive categories: 14 (48.2%) expert statements; 9 (31.0%) case studies; 5 (17.2%) literature reviews; 5 (17.2%) original research studies; and two (6.9%) book chapters. Of 11 topics outlined by our analysis, cultural considerations, community engagement, and ethics review were the most common (42.3%, 37.9%, and 34.5% of articles, respectively). Conclusions: This study represents the first systematic review of research ethics in the humanitarian setting. We identified an increase in articles with robust ethical discussions. However, our data highlight a paucity of original research studies, which, along with a continuation of the general trend of growing literature, will need to be remedied if the ideals of the Sphere Project are to be realized.
Emphasis on Beneficence in Research with Vulnerable Populations: Developing an Assessment Tool for Researchers
(2019-03) Pillai, Veena
Beneficence refers to the obligation the researcher has to maximize benefits for the individual participant in society. In research, the benefit can be of a potential nature, for example, "the greater good" potential of information that can transform policy or improve services. This indirect beneficence is widely accepted. This researcher believes that in vulnerable populations, we should consider the larger role beneficence has the potential to play. Whether beneficence is in the form of advocacy, direct services or incentives, researchers need to understand beneficence, its impact on research, and on study populations post-research. Understanding this better will help navigate the main challenge: How to derive the appropriate, non-coercive, ethical benefit for each unique project and each population. This study proposes to develop a tool that assesses, on a context and case basis, the appropriate form of beneficence for the study population involved. The study will conduct interviews with researchers and study participants in various contexts and populations to understand the positive and negative consequences of beneficence in research, factors that should be considered, and where beneficence should be placed on the research planning timeline. The findings will be put towards developing a tool researchers can use to guide them to finding the best form of beneficence for their study. Research and service opportunities in vulnerable populations are abundant, it is now time to find efficient ways to combine them for maximum benefit for the populations.
Unexpected and dangerous situations cropped during field research data collection for public health research: an experience sharing
(2019-03) Sudhakar Narayan, Morankar
Background: Researcher has conducted 50 large/small scales research in India and Ethiopia and experienced unexpected dangerous situations during field research despite taking care of ethical rules and regulations. Few dangerous situations are explained here (to be expanded during presentation). Experience: 1. Female respondents' husbands planned to rape female data collectors in remote thick jungle of dacoit area in India due to certain questions in the family planning survey interview. 2. Male researchers were physically beaten by community due to misunderstanding between languages. 3. Field researcher’s vehicle was surrounded by community members with rifles, guns and didn’t allow to collect data detaining more than 4 hours due to not informing to village head in advance and entering village suddenly. 4. Community became angry after 2 days friendly field data collection in the village and surrounded the vehicle of field researchers with sticks, rifles, guns due to dacoits robbed the village during previous night considering field researchers as messengers to dacoits. 5. On the way to rural area for data collection before stopping researcher’s vehicle in one village by villagers having sticks, sharp weapons, stones in hands who was in attacking mood pelted small stone on the vehicle to stop it in Ethiopia. Ethnic riots were suddenly erupted in the area without the knowledge of researchers. There was ethical clearance from the government, district administration and police were informed detailed program of our research. But such situation nobody expected. If this incidence would have occurred what is the ethical solution for it.
Ethical challenges when conducting research in rural, post-conflict areas: experiences from South Sudan
(2019-03) Mugo, Janet Wanjiku
South Sudan is the world's newest state and due to its conflict-ridden history, it experiences some of the worst human developmental outcomes. Humanitarian organizations are increasingly recognizing the need of evidence-based research to inform policy and programming. South Sudan presents several challenges which influences how research is conducted. First, the capacity of the ethics review board to review technical proposals is not clear. South Sudan, especially in rural areas, is a difficult place to collect primary data. Language barriers complicate informed consent processes as it is difficult getting native speakers who can translate complex research terms to the local language. Lack of qualified translators may mean data collection especially during translation, important nuances may be lost. Due to low education levels, it is also difficult to find and hire literate research assistants. Laptops and any type of recording devices are viewed with suspicion in South Sudan and often requires special permits to carry, which complicates the research process. Identifying information such as tribe is difficult to collect owing to historical issues of ethnic profiling of specific groups thus emphasizing the need for confidentiality. In some instances, community gatekeepers are armed actors, making it difficult to discern between coercion and voluntary participation. In South Sudan, study respondents travel long distances to participate in research activities. However they are not reimbursed as it is difficult to balance between compensating them for exposure to the study risks and paying them an amount that constitutes undue influence.
Improving Women's Autonomy in Humanitarian Crises through Qualitative Study
(2019-03) Princewill, Chitu Womehoma
Women's diminished autonomy is of paramount concern to many researchers across the board. The degree of women's diminished autonomy varies from country to country. The consequences of women's diminished autonomy are enormous; ranging from adverse health effects, feeling of being inferior, lack of women's reproductive rights, lack of access to adequate healthcare, gender inequality, maternal/child mortality and morbidity and lack of access to education. In Nigeria, Women's diminished autonomy has led to women's discrimination, subordination, rape, domestic violence and spouse death. Unfortunately, because the government has decided to treat these issues with kid gloves, wives have resorted to killing men who batter them. An exploratory research design was employed for this study. A semi-structured interview was used to conduct thirty-four in-depth interviews and six focus group discussions with purposively sampled educated, semi-educated, and uneducated Ikwerre women in monogamous or polygynous marriages. The interviews and focus group responses revealed a low level of awareness of women's autonomy amongst the Ikwerre women in Nigeria. Responses from the women suggested that the Ikwerre culture of absolute respect for men and religious belief were the real reason behind women's diminished autonomy. The patriarchal society to which these women belong stereotype them into accepting a second position to the men. Educating men on the importance of women's autonomy, and empowering women financially will help improve women's autonomy. There is a need for the Nigerian government to address cultural aspects that condone and promote gender discrimination.
Birth control strategies in disaster prone settings in India
(2019-03) Asirvatham, Packiaraj
Being an ethicist and a community worker it is always a challenge to deal with field research in humanitarian settings. In 2004, Indian ocean tsunami killed over 2400 children in my state (Tamilnadu), the proportion of children under 12 years old was even higher. Consequently, many people survived the tragedy find themselves childless and unable to bear further children because they had been sterilized. So, the government planned for reversal of tubal ligation (recanalization) and provided them a financial support of 25000 rupees to undertake the same in private hospitals. The recanalization of mothers in tsunami context raised many ethical issues and opened pandora’s box on birth control strategies in disaster prone settings. Communities and activists argue that it is better to empower the women and men in disaster prone zone to familiarize with easily controllable and reversible birth control methods as they may want to have children again when they lose their offspring in disasters. More importantly, the existing radical sterilization methods which is very much focused on population control should be reviewed in disaster prone settings. On the whole, being one of the most populous countries in the world which is having more than half of its population below 20 years of age which is potentially facing numerous disasters everyday in different parts should have a clear strategy and a vivid policy on birth control in disaster prone settings.
Advancing Health Research in Humanitarian Crises
(2019-03) Mistry, Amit
This presentation identifies the mission of the Fogarty Center at the National Institutes of Health. Within this, the Advancing Health Research in Humanitarian Crises program has been initiated recently. Specific projects within this program will be described, as well as resources and funding streams within Fogarty. Research ethics is an important cross-cutting strand across these projects.
The Nuffield Council on Bioethics: Contributing to debate on the ethical conduct of research in global health emergencies
(2019-03) Wright, Katharine
This presentation describes the Nuffield Council on Bioethics and its remit. It works on specific projects to analyse topics in bioethics and produce recommendations. A current project was triggered by the Ebola outbreak of 2014-2016 and is focused on the ethical issues with Research in Global Health Emergencies. Its progress to date will be discussed, including the four emerging themes identified to date.
A living laboratory? Ethics and experimentality in humanitarian innovation
(2019-03) Hunt, Matthew
The 2010 Haiti earthquake has been described as a living laboratory in which innovative technologies were used by local and international organizations to assist with search and rescue, relief coordination, and live mapping. It has proven to be a key inflection point for humanitarian innovation. Since then, each major humanitarian crisis has been associated with the uptake of new innovations and, in particular, novel information and communication technologies. The humanitarian innovation movement has also catalyzed developments such as new funding structures, humanitarian innovation services and labs within and outside humanitarian agencies, and closer collaborations among humanitarians, the tech sector, and networks of online volunteers. Together, these developments have contributed to changes in how humanitarian action is being carried out, as well as shifts in the language and culture of humanitarian action as innovation became a prominent paradigm in the field. While many innovations lead to improvements in service delivery, they also warrant attention regarding ethical norms that should govern their development and implementation. In this presentation, I examine ethical implications of the experimental nature of humanitarian innovation, including issues related to the targeting and prioritization of innovations, the way that relationships may be changed or created, what might be displaced by innovation processes, how the culture of innovation is influencing the humanitarian sector, and the nature of risks and potential blind spots for humanitarian innovation. I then propose values-sensitive humanitarian innovation as a model to foster ethical attentiveness across the innovation cycle, linking innovations with the ethical commitments of humanitarians, integrating oversight proportionate to the risks involved, evaluating and sharing insights gained, and engaging with local communities. The description of humanitarian innovation as occurring in the living laboratory of crisis is suggestive. It points to the need to be ethically responsive to how values, such as justice, respect for persons and communities, minimizing harms and promoting accountability, are implicated by and potentially challenged through humanitarian innovation processes
Consent complexities, Ebola, and the fine line between collaboration and exploitation in research conducted during public health emergencies
(2019-03) Nouvet, Elysée
Background: There is significant and growing scholarship attending to the experiences and motivations of clinical Tx trial participants in Low and Middle Income Countries (LMICs). A smaller and newer body of research is emerging around perceptions and experiences of research conducted during public health emergencies. This presentation is based on one such Research on Research (RoR) study, the R2HC-funded qualitative study "Perceptions and moral experiences of research conducted during the 2014-16 West Africa Ebola outbreak." Objective: This presentation takes West Africans' first-hand accounts of decisions to support or enroll in EVD research as a point of departure for troubling normative parameters and markers of "consent to research". Methodology: Content for this presentation is based on team-based analysis of semi-structured interviews (N=99) with West African EVD study participants, members of research ethics boards, researchers, trial staff, and community leaders. Findings: Our interviews revealed diverse motivations and aspirations or participating or supporting trials, as well as some frustrations around limited options for engagement and impact. A number of researchers with whom we spoke experienced their decisions to "collaborate" on trials as coerced. Others – participants and community leaders – evidently embraced opportunities to enroll in and/or support trials, but simultaneously connected their voluntariness to conviction of their participation's impact on lives, to understandings of collective ownership over bio-samples, and/or to hopes for new political subjectivities. Mismatch between consent to trials (where consent includes both enrollment in or collaboration with) and the loaded significances of that consent for many with whom we spoke indicate a need for more localized and critical attention to the logics and significances of consent to research in particular humanitarian emergencies. Conclusion: Upholding ideals of free and informed consent to research in contexts such as ETCs, where those approached for research are sick, distressed, and quarantined, is never going to be easy. What our research flags is that the complexities of consent during the West Africa EVD epidemic extended beyond the walls of the ETC and beyond infected patients. This in turn supports broadening what normally gets included in discussion of and strategies to uphold consent and voluntariness in humanitarian heath emergency research.
Avoiding the Same Mistakes: Understanding and Countering Bias in the Deployment of Artificial Intelligence for Humanitarian Assessments
(2019-03) Kreutzer, Tino
An effective response to humanitarian emergencies relies on detailed information about the needs of the affected population. In recent years, most primary data collection for this purpose has moved to handheld computer-assisted personal interviewing technologies, and—to a smaller extent—to computer-assisted telephone interviews. Natural language processing (NLP), a type of artificial intelligence (AI), provides radical new opportunities to capture qualitative data from voice responses of thousands of people per day, and analyze it for relevant content in order to inform humanitarian emergency decisions more rapidly. But this innovation, currently its pilot stages for deployment in Yemen, would rely heavily on opaque algorithms and training data to convert qualitative responses into data for operational planning purposes. Based on key informant interviews with engineers and humanitarian survey specialists, and a review of the latest proposals for countering bias in AI development, this paper provides an overview of the major ethical challenges related to deploying NLP in humanitarian emergencies. I demonstrate that previous quantitative data collection methods have a different set of biases that have become entrenched in humanitarian assessments, and how we may avoid similar mistakes in the age of more automation in data collection.
Selected Principles for Ethical Social and Behavior Change Communication
(2019-03) Jacobson, Tom; LeMire Garlic, Nicole
This paper will address ethical challenges in applied communication work undertaken to alleviate poverty and advance social justice in the subfield of development communication, alternatively called social and behavior change communication (SBCC). It will aim to identify principles that might be most relevant to a code of ethics or code of practice for SBCC work. The paper will begin with a brief characterization of the SBCC field and relevant ethical challenges. Following this, approaches to ethics that might be relevant to this exercise will be reviewed, including utilitarianism, Kantianism, and communitarianism. The body of the paper will engage ethics and justice related thought in the works of Amartya Sen and Jurgen Habermas. Amartya Sen's thinking offers a cosmopolitan treatment of justice and ethics that is particularly suitable for the global relevance of SBCC work, comprising an element of Sen's larger "capabilities" approach to development. Jurgen Habermas's work on "discourse ethics" is suitable because it conceives the formation of ethical and justice values explicitly as a communication process expressing citizen voice. While the work of these two scholars overlaps in some respects, and is complementary. Sen prioritizes development work while Habermas provides a more in-depth understanding of communication processes, and how communication processes may be linked to ethical frameworks that are just. The paper will not attempt to offer a code of ethics for SBCC. Rather, a number of ethical principles will be drawn from Sen's thinking and discourse ethics as these may be relevant to SBCC work.

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