Volume 21/1, June 2019, pp 93 – 101
Shana Swiss, Peggy J. Jennings, K. G. K. Weerarathne, and Lori Heise
Women’s Rights International works with rural women and girls who are living in countries at war or with ongoing political violence. In 2005, The Asia Foundation invited Women’s Rights International to Sri Lanka to evaluate the feasibility of a random-sample survey of women to document the impact of the decades-long conflict. The significant imbalance in the risks-to-benefits ratio compelled us to recommend that random-sample surveys that included questions about sexual violence be avoided at that time, especially in the displaced persons areas. Instead, we recommended that three strategies be given priority in situations in which the risks for women are too great to justify a random-sample survey. First, maximize the use of existing information. Second, collect survey data only in partnership with a strong community organization that will use the data for direct tangible benefits. Third, share knowledge that will help build the capacity of local organizations to design surveys that address their priorities, and collect and use their own data following ethical guidelines that maximize the protection of individuals and the wider community. We implemented these recommendations in a partnership with a local organization with a strong history of advocating for women’s rights.
Women’s Rights International (WRI) works with local organizations in countries in conflict to adapt research methods and participatory approaches to document the impact of conflict on women and girls, and to support efforts by community groups to develop creative programs that address the effects of war and violence on women’s lives. We have taken innovative programs to regional and national scales using existing networks, such as training programs for traditional birth attendants through the ministry of health in Liberia, and low-power FM radio stations formed by community groups throughout Haiti. Ethical and safety considerations are at the forefront of WRI’s work with communities. Data collection efforts must be conducted in partnership with an existing organization, serving the interests of that organization, driven by community needs and interests, and carried out by women who belong to the population or community from which the data are collected. We have developed tools, such as data security and monitoring plans, for promoting ethical relationships between local, national, and international organizations that collect or have access to human rights data and other sensitive information. Our principles for working respectfully with the priorities and knowledge of local groups and with deep community participation have been influenced by ethical guidelines developed by indigenous peoples and by others who share our priorities of ethical partnerships between individuals and organizations in which there may be an imbalance of knowledge or power in a given context.
Over the past 25 years, WRI has worked with women and local organizations during active conflict or political violence in the former Yugoslavia, Liberia, Haiti, and Sri Lanka. Each of those data collection efforts presented unique risks, pressures, and ethical challenges. When the editors of this special issue invited us to submit an article about the ethical challenges we have faced while working in conflict settings, we chose to describe a project we carried out in Sri Lanka during 2005–2006. This article describes how ethical decision making in the field played a significant role in determining the nature of the field work in an ongoing conflict situation in which the conditions for protecting participants and researchers were complex, dynamic, and rapidly changing. We describe here the all-too-common situation in which the pressures for collecting human rights data can be in apparent contradiction with ethical obligations to protect individuals at risk who may be asked to provide those data. We are well aware that the pressures on academic researchers and human rights advocates can make it difficult or impossible to make an ethical decision to discontinue a fieldwork project once it has been set in motion. For that reason, we present some alternative methodological strategies for adjusting fieldwork objectives and methods in order to accommodate the mutual imperatives of using data to support human rights advocacy while at the same time protecting the safety and confidentiality of individuals living under dangerous conditions.
In 2005, The Asia Foundation invited WRI to Sri Lanka to evaluate the feasibility of conducting a random-sample survey of the impact on women of the decades-long civil conflict. The survey was intended to complement ongoing efforts by the Human Rights Accountability Coalition (HRAC), a group of Sri Lankan human rights organizations, to document political and ethnic violence. The HRAC members were concerned that human rights violations against women were not well captured in their documentation efforts using a variety of sources, such as victim and witness statements, legal case files, and newspaper reports, among others. Their objective in consulting with WRI was to enhance their data collection efforts by using statistical sampling methods to interview women selected at random to get a more accurate estimate of the scope of human rights violations, including sexual violence. (Note: This article discusses fieldwork carried out during 2005 and 2006, prior to the military campaigns that began in late 2006 and the displaced persons camps set up in 2009. These subsequent events have received severe criticism both by the United Nations and other human rights organizations for serious human right violations. Those events are not reflected in the fieldwork discussed here.)
This section describes the methods we used in the field to evaluate safety and to make decisions about adjusting the data collection effort to balance the objectives of supporting advocacy for women’s human rights while protecting the safety of those women who might be asked to provide this sensitive information.
Our initial assessment addressed some of the ethical preconditions for research involving internally displaced people (IDP). First, we verified that although there were a few existing reports addressing the impact of the conflict on women, none had been able to obtain an accurate estimate of the scope of human rights violations against women, particularly sexual violence, during the conflict. Second, we confirmed that there were a number of established and well-respected local and international humanitarian aid, development, and health care nongovernmental organizations (NGOs) working in the conflict-affected regions that were well positioned to be potential partners in a survey effort and would likely be able to use the results to provide direct benefits to participants.
We next considered the safety and ethical issues that would be involved in carrying out a survey of women living in the IDP areas. Three fundamental principles based on ethical standards for biomedical research served, among others, as our guidelines: (1) respect for the autonomy of individuals, (2) the obligation to provide beneficial outcomes commensurate with risk; and (3) the imperative to distribute the receipt of benefits and the burden of risk fairly and justly. We traveled to some of the conflict-affected regions of the country and consulted with local NGOs (including those serving women and those serving internally displaced people), experts, community members, women’s rights activists, lawyers, physicians, legal aid organizations, women’s empowerment groups, and women and girls living in displaced persons camps and IDP areas. Most of these meetings took place in Colombo, Vavuniya, and Batticaloa. At the time of our assessment, portions of the northern and eastern regions were inaccessible because the conflict was still ongoing at that time.
It was through this more extensive local assessment of safety, ethical, and data-quality issues that it became evident that the environment in Sri Lanka for women’s fundamental rights was so difficult, particularly in the IDP areas, that it was neither safe, ethical, nor feasible to select women at random and encourage them to disclose experiences of sexual violence. Three main areas of risk embedded in the social and legal context for women led to our conclusion that random-sample survey research that included questions about sexual violence could be ethically carried out only under very limited conditions.
Risks related to social and legal conditions
The first and primary risk factor was the significant social consequences of “shame,” or losing face. If a woman revealed that she had been raped or sexually abused, she faced the very real risk of being ostracized from her family, her community, and Sri Lankan society in general. She may never be able to marry or, if she was already married, she may be rejected and abandoned by her husband and in-laws. She may face violent retribution from the perpetrator as severe as maiming from acid burns or even murder. She may commit suicide. Further, she may be placed involuntarily in indefinite state detention under ‘“protective” custody. Second, the nature of the law enforcement and justice system was such that a woman who came forward with a complaint or charge of sexual abuse could not rely on adequate protection or redress. Women faced significant obstacles to receiving adequate treatment at every step in the process, from lodging a complaint with the police, to receiving appropriate service from lawyers, prosecutors, judges, and the prison system, to seeing the case brought to court in anything less than six to ten years or more. Sri Lankan laws themselves were such that a woman was at a disadvantage in nearly every legal situation, whether it was land rights, “vagrancy,” domestic violence, or sexual assault.
Risks related to displacement
Women in the IDP areas were living under conditions that compounded the curtailment of their fundamental rights and put them at additional risk of harm from a random-sample survey on human rights violations. In addition to the social and legal background conditions, women living in the IDP camps were extremely vulnerable to exploitation because they were dependent on the state, with little ability to determine the course of their own lives. A large majority of them had been displaced for 10 years or more under conditions in which basic dignity and fundamental rights were merely ideals. Their ability to freely make decisions about their own best interests had been curtailed nearly completely. They had no access to land, had few options for income generation, and had only within the last few years been able to move freely in and out of the camps without requiring authorization from camp officials. Neighbors lived side by side in 10-by-10-foot rooms, separated only by plywood or fiberboard. Privacy was difficult to obtain even for toileting and bathing, let alone for a confidential interview. At any moment, depending on the decree of government military or police officials, people in camps would find themselves living essentially in detention, under imposed curfew, or under a number of other limits on their basic freedoms.
Risks related to data quality
In Sri Lanka in 2005, partly as a result of the decades-long conflict in the northern and eastern regions, and the devastating tsunami that affected much of the coastline in 2004, there had been a prolonged presence of international, national, and local NGOs providing assistance and interventions. Most, if not all, of those NGOs collected information in order to carry out their mandates. Because some of these NGOs did not communicate effectively with one another or share information, people living in the IDP areas were asked to provide the same information, including details about human rights violations, to multiple organizations for multiple purposes. During our discussions with NGO staff who worked in the displaced persons camps, we heard that people living in the camps had grown skeptical and resentful about participating in interviews and surveys because they had revealed their experiences of abuse many times and their expectations of benefit were not realized. Further, short of persuading each woman to disclose the details of the abuses she had suffered over the more than 20 years of conflict and displacement (details she may have chosen to keep hidden for her own sake), there was, at that time, not much that had not already been documented about the situation of women living in the camps. Although the findings from many of the previous surveys tended to be kept within the organization that collected the data, some very good studies had been published that clearly laid out the issues facing women living in the IDP areas in Sri Lanka. Yet the dire situation for women in the camps remained.
The significant imbalance in the ratio of risks and benefits compelled us to recommend that new efforts to conduct random-sample surveys that included questions about sexual violence be avoided at that time, especially in the IDP areas. Choosing a woman at random and encouraging her to disclose information about rape or other sexual abuse, or other topics that may cause her or her family to lose face, would have been asking her to take on a very high level of risk.
Further, we concluded that it would be unethical to expect that a woman living under these extreme hardships in the IDP camps could freely and autonomously, without the presence of coercion or misperception, weigh the risks and benefits of disclosing sexual violence in a survey that she may have perceived as being linked to aid. Unless an NGO planning to conduct a survey that included questions about sexual violence could provide immediate useful benefits to participants, the risk-to-benefit ratio of conducting such a survey was unacceptably high.
We also believed it was unlikely that a survey would yield accurate data on sensitive topics in which a woman may have feared the consequences of disclosing sexual violence. Because the risks were so high, many women in the sample population may have chosen not to disclose sensitive information, and the survey results would have been inaccurate and potentially harmfully misleading. Furthermore, if the resulting survey data were inaccurate, and useless for advocating for services or justice, the women who had chosen to disclose information would have taken risks (and potentially endured harm) for no benefit whatsoever. It was our view that it would have been unethical to put any Sri Lankan woman at additional risk when the findings would have been of limited use at best—and more likely harmful.
In settings where the emergency situation is repeated or prolonged, data can take on a particular value that makes organizations reluctant to share it. When funding for programs is limited, NGOs may be compelled to compete with one another in order to have exclusive information that supports a unique proposal for new or continued funding. Such an environment creates additional risks for the vulnerable individuals who provide information. It was also not uncommon at the time for outside organizations who had partnered with local NGOs to collect data, then retain ownership of those raw data and findings without bringing back the findings or specifying the local NGO’s rights to those data. When outside organizations extract data through a partnership with a local NGO, they impede the local NGO’s ability to use its own judgment to decide when and how to share the data or report the findings in ways that maximize local benefits and protect the community of individuals who provided the data.
The consequences for publicly disclosing sexual violence were very serious for Sri Lankan women, and, as a result, women generally did not disclose the sexual violence in their lives, except under extreme or unusual situations. Some Sri Lankan women did, however, choose to come forward and disclose sexual violence in order to seek justice or medical treatment. We believe that from an ethical standpoint, a woman who chooses to face these risks does so because she perceives that the significant and direct potential benefits of seeing the perpetrator brought to justice or receiving necessary medical or psychosocial services warrant the risks. A random-sample survey, however, would have solicited information about sexual violence from women who had not previously volunteered it.
Despite the risks, and because of the risks, there remains an urgent and pressing need to document the scope of all types of violence against women during conflict. Accurate and systematic documentation is needed to dispel a strictly enforced culture of silence and acceptance of violence against women. But until we can find a way to break that silence without requiring women to endure the substantial risks of coming forward before it is safe to do so, the problem of sexual violence against women will continue to be denied and ignored.
We recommend three general strategies that should be given priority in situations in which the risks for women are too great to justify a random-sample survey: (1) maximize the use of existing information; (2) collect survey data only in partnership with a strong community-based NGO that will use the data for direct tangible benefits; and (3) help build the capacity of local NGOs and NGO coalitions to collect and use data following ethical guidelines that are appropriate for their communities and that maximize the protection of individuals.
Maximize the use of existing information
We must maximize the use of the existing data from women who choose independently to bear the risks of disclosure. In addition, we must be creative in identifying and using existing data that were not originally collected for human rights purposes. For example, one of the authors and her colleagues used hospital records about women who became pregnant as a result of rape to obtain an estimate of the number of women raped in the former Yugoslavia during that conflict. In our view, the potential for using existing data to shed light on the scope of sexual violence in conflict is an avenue that deserves significant exploration.
All possibilities for using quantitative methods on existing legal, medical, and social service records to unveil the scope and reality of violence in women’s lives should be explored and fully considered. Analyses of existing records could in some cases be done by supporting local organizations and institutions in using their existing documents in a safe and ethical manner to generate de-identified data to share with other organizations. Facilitating the open sharing of de-identified data among NGOs must be done only in a context where the protection of individual identities can be appropriately accomplished. Sharing data will reduce the risks associated with face-to-face interviews, but it may increase the risk of breach of confidentiality. We recommend that NGOs that share data formulate and adopt a data security and monitoring plan, a set of agreed-on principles and specific practices under which data will be shared without compromising the safety of the individuals who provided it.
Partner with a strong local organization
If a survey is conducted, it must be done with a well-established, well-respected local organization working with women in that community, and it must be done within the framework of their programmatic objectives. In Sri Lanka, there were a number of community-based NGOs that had built up substantial credibility over long years of service and advocacy. We must share knowledge with these strong local organizations that supports their efforts to collect their own data within ethical guidelines to meet their own needs.
Support the protective capacities of local organizations and coalitions
We recommend sharing knowledge that builds the capacity of local NGOs to conduct local ethical review of data collection efforts, to protect confidentiality, and to enhance the security of electronic files and paper documents where the safety of individuals is a concern. It is the fieldworker’s responsibility to ensure appropriate ethical review of any data collection effort in which he or she is involved. An appropriate review must reflect sufficient expertise on the local conditions. In addition, the fieldworker should always appoint a group of individuals from the regional or national level to serve as a safety and monitoring committee to consider questions related to safety and ethics.
Epilogue: Fieldwork in support of human rights
The Asia Foundation respected our recommendation not to go forward with a random-sample survey of women’s human rights violations in the IDP areas as long as the conditions remained unsafe for women to disclose sensitive information. The original intent behind conducting a survey on women’s human rights, however, was to support the Asia Foundation’s programs advocating for women whose lives had been affected by the political and ethnic violence in Sri Lanka. But rather than give up on the goal of documenting human rights violations against women, foundation staff asked us to help them implement our recommendations in a partnership with a local NGO with a strong history of advocating for women whose lives had been affected by human rights abuses during an earlier period of political violence.
In 2006, we partnered with the Vehilihini Development Centre (VDC), a local NGO in Monaragala, the epicenter of a period of political violence in which 30,000–60,000 men were “disappeared” in the late 1980s. VDC had been working on behalf of the widows of the disappeared for nearly 20 years, helping them challenge some of the social and legal issues that were limiting women’s fundamental rights. In the 1990s, VDC staff surveyed widows of the disappeared men to document the devastating impact that the political violence and discriminatory customs had on these women’s lives, including losing their access to housing and land after becoming widows. Using the results of their survey, VDC initiated and sustained a six-year campaign that helped achieve significant reform of the country’s land inheritance laws. In 2006, VDC and our local advisors felt that it was the right moment in history to be able to ask these widows about more sensitive issues related to the earlier political violence, particularly now that the impacts could be traced through three generations. A new survey of the widows of the disappeared men could reveal important information about conflict-related issues still affecting women in that region. By focusing on disappearances, a single phenomenon related to conflict, and by exploring the longer-term impacts on women and their families, the new survey could reveal a cross-section of issues that, if left unresolved, could presumably be affecting Sri Lankan women and their families in the current conflict.
Through our partnership with VDC, we worked closely together to conceptualize the survey questions that would be most effective in quantifying the issues that VDC wanted to address. VDC staff shared their knowledge about the complex social, cultural, and legal issues that were affecting the widows in their district of Monaragala. We shared our knowledge about research ethics, survey design, and data collection while VDC staff created and conducted their own survey, collected the data, created a database, entered the data into EpiInfo, generated their own results, created reports on their findings, and used them to advocate for services for families of the disappeared. We facilitated a process of ethical decision making about how to conduct the survey in a way that would minimize risk to the women and maximize VDC’s ability to provide tangible benefits. We collaborated on the development of a research and safety advisory committee, as well as a data safety and monitoring plan that assured the organization’s ownership rights over the survey data and its rights to use its own judgment about how to use and share the data in accordance with ethical safety guidelines that protected the women who provided the information. Our working relationship with VDC embodied as much as possible the principles of community-based participatory research that are also codified in indigenous-based guidelines for ethics review. At the time of publication, VDC was still working successfully in Monaragala on behalf of women’s rights.
No conflict starts with the first bullet fired, nor does it end with the last. When the pressures of collecting data in a dangerous situation are in apparent contradiction with the imperative to protect participants, two of the most valuable tools a fieldworker can use are a broad perspective and a long view. In some situations, safely collecting data about past related events may serve the overall objectives as well as, or better than, collecting risky data about current events. Before we approach individual women selected at random and ask them to endure risks, we must leverage existing data to challenge and repair the system that keeps women silent, and we must respect their willingness to endure risks by providing tangible benefits as quickly as possible. We must also take a long-term view in helping local organizations obtain the technical knowledge they need to collect and share information in ways that protect women’s safety and allow women to advocate more powerfully on their own behalf.
Admittedly, some things have changed since 2005 that might affect the calculus of conducting such studies today. Innovations such as audio computer-assisted interviewing now allow even non-literate women to listen and respond in total privacy to recorded questions using headphones and tablets. This could help avoid some of the stigma and safety concerns we grappled with; however, it raises many other concerns, such as the psychological impact, still unexplored, of asking women about past trauma and abuse via the isolating modality of headphones. For women unaccustomed to hearing intimate questions asked by recording, this approach could be experienced as even more invasive and triggering than questions asked out loud by an empathetic interviewer.
The political and donor environments around researching violence in conflict have also changed, in good ways and bad. Far more attention is now given to these issues, as evidenced by United Nations Security Council Resolution 1325 and high-level events such as the UK-sponsored Global Summit to End Sexual Violence in Conflict. While the increased attention is welcome at one level, advocates and researchers have criticized the singular focus on sexual violence by combatants, noting that even in conflict and post-conflict settings, research has demonstrated that violence by partners and other non-combatants is the dominant form of violence that women face. Research has helped widen the focus of this lens, and the global policy community must follow.
With the rise of evidence-based policy and increasing pressure on donors and grantees to demonstrate “results,” there are fewer donors willing to support the type of thoughtful evaluation of risk and benefit that we were allowed to pursue in Sri Lanka. The pressures for quick assessment, quantitative data to guide programming, and evidence of “impact” are far greater today than they were in 2005. These forces only increase the potential that we will impose greater risks in our haste to help.
So, while some things have changed, many challenges remain. In our view, we should ask women to participate in random-sample survey research on sexual and domestic violence in conflict settings only when we are confident that the benefits outweigh the risks, other sources of data are not available, and every effort has been made to minimize harms and ensure the data will be used by local partners to benefit women.
We are grateful to the late Herbert F. Spirer for his vision, passion, and pioneering accomplishments in the quantitative documentation of human rights. All of our work has been informed and inspired by Herb. The human rights community misses him dearly, as do we. But we will carry on as he taught us to do—counting as carefully, creatively, and ethically as we can.
Shana Swiss, MD, is founder and director of Women’s Rights International, San Francisco, USA, and project director with People’s Palace Projects, Queen Mary University of London, UK.
Peggy J. Jennings, PhD, is an independent data analyst and consultant and a former research and education specialist at Women’s Rights International, San Francisco, USA.
G. K. Weerarathne is secretary of the Vehilihini Development Centre, Monaragala, Sri Lanka.
Lori Heise, PhD, is a professor of gender, violence, and health at the Johns Hopkins Bloomberg School of Public Health and the Johns Hopkins University School of Nursing, Baltimore, USA.
Please address correspondence to Shana Swiss. Email: firstname.lastname@example.org.
Competing interests: None declared.
Copyright © 2019 Swiss, Jennings, Weerarathne, and Heise. 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 authors and source are credited.
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