Researching sensitive topics with children and young people: ethical practice and blurry boundaries

Despite representing a vast and global concern, the narratives of children who experience child sexual exploitation (CSE) and access associated services are marginalised within research. As an outcome, relatively little is known about how children cope with the impact and consequences of their experiences. This paper draws together methodological insights from researchers reflecting upon three distinct pieces of qualitative fieldwork conducted with children and young people considered ‘vulnerable’ to, and ‘at risk of’, CSE. In doing so, we seek to recognise the challenges encountered when conducting research with vulnerable populations and explore the ‘blurry boundaries’ that researchers tread in order to balance competing power dynamics. This paper will discuss potential safeguarding concerns that arise when conducting sensitive research and will share our experiences of supporting young people to take part in research around child sexual exploitation. We will reflect upon the research process to highlight some of the strategies adopted to enable young people to engage in data collection safely. We consider the dynamic ethical practices that take place in the moment of research encounters, alongside the framework of procedural ethics, to conclude that both are fundamental to enable meaningful participation in research

The IRB as Gatekeeper: Effects on Research with Children and Youth

Gatekeepers play an important role in research conducted with children and youth. Although qualitative researchers frequently discuss institutional and individual gatekeepers, such as schools and parents, little attention has been paid to the role that Institutional Review Boards (IRBs) play in determining who is allowed to research particular populations and the ramifications of these decisions for findings involving children and youth. In order to examine this role, we compare negotiations of two researchers working on separate projects with similar populations with the IRB of a large Midwestern university. In both cases, it is likely that board members used their own personal experience and expertise in making assumptions about the race, social class, and gender of the researchers and their participants. The fact that these experiences are supported by findings across a wide range of IRBs highlights the extent to which qualitative research with children is changed (or even prevented) by those with little knowledge of typical qualitative methodologies and the cultural contexts in which research takes place. While those such as principals, teachers, and parents who are traditionally recognized as gatekeepers control access to specific locations, their denial of access only requires researchers to seek other research sites. IRBs, in contrast, control whether researchers are able to conduct research at any site. Although they wield considerably more control over research studies than typical gatekeepers, the fact that they are housed in the institutions at which academic researchers work also means that we can play a role in their improvement

Regulating Social Research: Exploring the Implications of Extending Ethical Review Procedures in Social Research

Reflecting on my experience of leading several qualitative research projects to investigate \'sensitive\' topics with potentially \'vulnerable\' participants, this paper considers the impact and consequences of increased ethical regulation in relation to my own research field and social research more generally. It argues that extending ethical regulation threatens social research in general, and specifically, threatens the study of \'sensitive\' topics with \'vulnerable\' populations. The consequences of increased ethical regulation may contradict its intention and place \'vulnerable\' participants at greater risk than \'sensitive\' research undertaken with such groups in earlier historical periods. The paper urges social researchers to act collectively, to engage with ethical regulatory regimes in order to challenge the threats they pose to scholarship, and by doing so, defend the value of social research for advancing knowledge so that our scholarship might better serve the populations we study.Ethical Regulation, Sensitive Topics, Vulnerable Groups, Social Research, ESRC

Ethical dilemmas in medical humanitarian practice: cases for reflection from Médecins Sans Frontières.

Médecins Sans Frontières (MSF) is an independent medical humanitarian organisation working in over 70 countries. It has provided medical assistance for over 35 years to populations vulnerable through conflict, disease and inadequate health systems. Medical ethics define the starting point of the relationship between medical staff and patients. The ethics of humanitarian interventions and of research in conflict settings are much debated. However, less is known about the ethical dilemmas faced by medical humanitarian staff in their daily work. Ethical dilemmas can be intensified in humanitarian contexts by insecure environments, lack of optimum care, language barriers, potentially heightened power discrepancies between care providers and patients, differing cultural values and perceptions of patients, communities and medical staff. Time constraints, stressful conditions and lack of familiarity with ethical frameworks can prevent reflection on these dilemmas, as can frustration that such reflection does not necessarily provide instant solutions. Lack of reflection, however, can be distressing for medical practitioners and can reduce the quality of care. Ethical reflection has a central role in MSF, and the organisation uses ethical frameworks to help with clinical and programmatic decisions as well as in deliberations over operational research. We illustrate and discuss some real ethical dilemmas facing MSF teams. Only by sharing and seeking guidance can MSF and similar actors make more thoughtful and appropriate decisions. Our aim in sharing these cases is to invite discussion and dialogue in the wider medical community working in crisis, conflict or with severe resource limitations

Docile Bodies: Transnational Research Ethics as Biopolitics

This essay explores the claim that bioethics has become a mode of biopolitics. It seeks to illuminate one of the myriad of ways that bioethics joins other institutionalized discursive practices in the task of producing, organizing, and managing the bodies—of policing and controlling populations—in order to empower larger institutional agents. The focus of this analysis is the contemporary practice of transnational biomedical research. The analysis is catalyzed by the enormous transformation in the political economy of transnational research that has occurred over the past three decades and the accompanying increase in the numbers of human bodies now subjected to research. This essay uses the work of Michel Foucault, particularly his notion of docile bodies, to analyze these changes. Two loci from the bioethics literature are explored—one treating research in the United States and one treating research in developing countries. In the latter, we see a novel dynamic of the new biopolitics: the ways in which bioethics helps to create docile political bodies that will police themselves and who will, in turn, facilitate the production of docile human bodies for research

Rethinking the therapeutic misconception: social justice, patient advocacy, and cancer clinical trial recruitment in the US safety net.

BackgroundApproximately 20% of adult cancer patients are eligible to participate in a clinical trial, but only 2.5-9% do so. Accrual is even less for minority and medically underserved populations. As a result, critical life-saving treatments and quality of life services developed from research studies may not address their needs. This study questions the utility of the bioethical concern with therapeutic misconception (TM), a misconception that occurs when research subjects fail to distinguish between clinical research and ordinary treatment, and therefore attribute therapeutic intent to research procedures in the safety net setting. This paper provides ethnographic insight into the ways in which research is discussed and related to standard treatment.MethodsIn the course of two years of ethnographic fieldwork in a safety net hospital, I conducted clinic observations (n=150 clinic days) and in-depth in-person qualitative interviews with patients (n=37) and providers (n=15). I used standard qualitative methods to organize and code resulting fieldnote and interview data.ResultsFindings suggest that TM is limited in relevance for the interdisciplinary context of cancer clinical trial recruitment in the safety net setting. Ethnographic data show the value of the discussions that happen prior to the informed consent, those that introduce the idea of participation in research. These preliminary discussions are elemental especially when recruiting underserved and vulnerable patients for clinical trial participation who are often unfamiliar with medical research and how it relates to medical care. Data also highlight the multiple actors involved in research discussions and the ethics of social justice and patient advocacy they mobilize, suggesting that class, inequality, and dependency influence the forms of ethical engagements in public hospital settings.ConclusionOn the ground ethics of social justice and patient advocacy are more relevant than TM as guiding ethical principles in the context of ongoing cancer disparities and efforts to diversify clinical trial participation

Addressing Ethical Issues in Studying Men’s Traumatic Stress

Like many human experiences, traumatic stress is highly gendered. Over the past several decades, a sub-stantial number of empirical studies have explored ethical issues in traumatic stress research. However, these studies have typically reported female samples or failed to account for the influence of gender in their analyses of mixed-sex samples. By extension, ethical issues that are relevant to male participants in traumatic stress research are poorly understood. After briefly exploring why the vulnerabilities of male participants are under-explored in traumatic stress research, this article highlights many ethical issues that are important to address when men participate in traumatic stress research, concluding with some sugges-tions for how these might be taken up to advance the field

The “Integrative Justice Model” as Transformative Justice for Base-of-the-Pyramid Marketing

Writing in Business and Politics, Santos and Laczniak (Business and Politics 14(1) 2012) formulated a normative, ethical approach to be followed when marketers e ngage impoverished market segments. It is labeled the integrative justice model (IJM). As noted below, that approach called for authentic engagement, co-creation, and customer interest representation, among other elements, when transacting with vulnerable market segments. Basically, the IJM derived certain operational virtues, implied by moral philosophy, to be used when marketing to the poor. But this well-intentioned approach raises a significant “So what?” question. Are such sentiments anything but lofty aspirations for idealists or are there steps to be taken by society and business managers of goodwill to make the adaptation of the IJM by corporations more likely and pragmatic? This paper begins to layout a roadmap that shows “how and why” the IJM might more likely be vitalized. The crux, as described below, is found in the transformational justice dimensions that are embedded in institutions (and supporting institutional arrangements); such external institutions provide a “power” impetus to assure the ethical rights claims that impoverished consumers have owed to them. In this way, the ideal exchange characteristics for bottom (or base) of the pyramid (BoP) markets argued for in the IJM can become actively transformational. The main contribution of this paper is that it begins to chart out the institutional system elements that need to exercise power in order to deliver a “fairer” marketplace for BoP consumers

Sorry to say goodbye: the dilemmas of letting go in longitudinal research.

The emotional dilemmas and challenges facing researchers within the research process are beginning to be documented within the literature, and academic interest in them is in ascendency. This paper adds to this growing discourse by taking a reflective journey through 19 years of research practice. It presents an honest and revealing manuscript highlighting in particular, the researcher’s emotional dilemmas experienced when disengaging from participants at the end of longitudinal research studies. It uses case studies to highlight some of the challenges in maintaining the participant–researcher boundaries and the emotional dilemmas this creates when trying to say goodbye. It argues that blurring the boundaries of participant–researcher relationships and establishing a trusting relationship can present emotional difficulties for researchers during and long after the closure of a research study

Engineering the Climate: The Ethics of Solar Radiation Management

This important edited collection addresses ethical issues associated with solar radiation management (SRM), a category of climate engineering techniques that would increase the planet’s reflectivity in order to offset some of the impacts of anthropogenic climate change. Such techniques include injecting sulfate aerosols into the stratosphere or brightening marine clouds with seawater. Although SRM has the potential to cool the planet by reducing the amount of incoming solar radiation absorbed by the planet, it raises a wide array of difficult and interesting ethical issues. Engineering the Climate makes an important contribution to addressing many of these issues