Exploratory Health Disparities Research: The Need to Provide a Tangible Benefit to Vulnerable Respondents

This article examines the responsibilities of researchers who conduct exploratory research to provide a service to vulnerable respondents. The term "service" is used to denote the provision of a tangible benefit in relation to the research question that is apart from the altruistic research benefits. This article explores what this "service" could look like, who might be responsible for providing it, and the challenges associated with such a service. The article argues that not providing a tangible benefit to vulnerable research participants is inconsistent with the principle of social justice that undergirds much of the rationale for conducting health disparities research.     

The Emergence of Clinical Research Ethics Consultation: Insights From a National Collaborative

The increasing complexity of human subjects research and its oversight has prompted researchers, as well as institutional review boards (IRBs), to have a forum in which to discuss challenging or novel ethical issues not fully addressed by regulations. Research ethics consultation (REC) services provide such a forum. In this article, we rely on the experiences of a national Research Ethics Consultation Collaborative that collected more than 350 research ethics consultations in a repository and published 18 challenging cases with accompanying ethical commentaries to highlight four contexts in which REC can be a valuable resource. REC assists: 1) investigators before and after the regulatory review; 2) investigators, IRBs, and other research administrators facing challenging and novel ethical issues; 3) IRBs and investigators with the increasing challenges of informed consent and risk/benefit analysis; and 4) in providing flexible and collaborative assistance to overcome study hurdles, mediate conflicts within a team, or directly engage with research participants. Institutions that have established, or plan to establish, REC services should work to raise the visibility of their service and engage in open communication with existing clinical ethics consult services as well as the IRB. While the IRB system remains the foundation for the ethical review of research, REC can be a valuable service for investigators, regulators, and research participants aligned with the goal of supporting ethical research.     

Sexual Health Research Among Youth Representing Minority Populations: To Waive or Not to Waive Parental Consent

Human immunodeficiency virus (HIV) and other sexually transmitted infections (STIs) significantly burden youth 13–24 years of age in the United States. Directly engaging youth in sexual health research is a public health priority and urgently needed to develop targeted, youth-friendly, and culturally relevant HIV/STI prevention interventions. Controversies arise, however, regarding informed assent and consent, parental permission or consent, and the definition of “child”/“minor” as it relates to medical, legal, and ethical issues. In this article, we describe challenges in the human subjects review processes that were undertaken before beginning an HIV/STI prevention research project with sexually active youth in an urban setting. These findings provide important contextual information to facilitate youth sexual health research and care, and Institutional Review Board approval processes with fewer delays.     

The donor is in the details

Recent research finds that people respond more generously to individual victims described in detail than to equivalent statistical victims described in general terms. We propose that this “identified victim effect” is one manifestation of a more general phenomenon: a positive influence of tangible information on generosity. In three experiments, we find evidence for an “identified intervention effect”; providing tangible details about a charity’s interventions significantly increases donations to that charity. Although previous work described sympathy as the primary mediator between tangible information and giving, current mediational analyses show that the influence of tangible details can operate through donors’ perception that their contribution will have impact. Taken together with past work, the results suggest that tangible information of many types promotes generosity and can do so either via sympathy or via perceived impact. The ability of tangible information to increase impact points to new ways for charities to encourage generosity.     

“Paid to Endure”: Paid Research Participation,Passivity, and the Goods of Work

A growing literature documents the existence of individuals who make a living by participating in phase I clinical trials for money. Several scholars have noted that the concerns about risks, consent, and exploitation raised by this phenomenon apply to many (other) jobs, too, and therefore proposed improving subject protections by regulating phase I trial participation as work. This article contributes to the debate over this proposal by exploring a largely neglected worry. Unlike most (other) workers, subjects are not paid to produce or achieve anything but to have things done to them. I argue that this passivity is problematic for reasons of distributive justice. Specifically, it fails to enable subjects to realize what Gheaus and Herzog call “the goods of work”—a failure not offset by adequate opportunities to realize these goods outside of the research context. I also consider whether granting subjects worker-type protections would accommodate this concern.     

The spiritual benefits of travel for senior tourists

This research explores the spiritual benefits of travel for older adults and illustrates how travel meets seniors' self‐actualization and spiritual growth needs. The theoretical point of departure for this research is seniors' quest for meaning and self‐actualization, which act as push factors inducing older adults to travel. Semistructured depth interviews were conducted with 16 retired senior informants who had extensive travel experience. Using an interpretive method, this research reveals four key themes that illustrate the spiritual benefits of travel, thereby extending the growing literature on the motivations of senior travelers. These themes are described as “traveling generates meaning for older adults,” “traveling reveals the self to older adults,” “traveling encourages older adults to better understand others,” and “traveling enables older adults to better understand their relationship to nature”. In sum, the themes describe how older adults may meet their unique spiritual needs through travel and thereby enhance their spiritual development. This research represents one of a few studies examining senior tourism to employ an interpretive method and provides rich insights as a result. This research also extends the emerging research on spirituality in marketing by illustrating how the tourism industry may benefit from a perspective that considers the spiritual benefits of consumption. The research findings suggest that the intangible spiritual benefits of travel, in addition to the tangible benefits, should be highlighted in travel offers and tourism communications targeted to older adults. Copyright © 2014 John Wiley & Sons, Ltd.     

Increased research literacy to facilitate community ownership of health research in low and middle income countries

ABSTRACT

The expansion of health research to low and middle income countries has increased the likelihood of exploitation and undue influence in economically vulnerable populations. In behavioral research, “reasonable availability”, which was originally developed for biomedical research and advocates for the equitable provision of any product developed during the research process, cannot always prevent exploitation. In such cases and settings, the informed consent process may lack cross-cultural validity and therapeutic misconceptions may arise. This article advocates for a mutual learning framework where international researchers can gain cultural competence while training and empowering local partners, increasing community ownership of health research.     

“Cow Is a Mother,Mothers Can Do Anything for Their Children!” Gaushalas as Landscapes of Anthropatriarchy and Hindu Patriarchy

This article argues that gaushalas, or cow shelters, in India are mobilized as sites of Hindutva or Hindu ultranationalism, where it is a “vulnerable” Hindu Indian nation—or the “Hindu mother cow” as Mother India—who needs “sanctuary” from predatory Muslim males. Gaushalas are rendered spaces of (re)production of cows as political, religious, and economic capital, and sustained by the combined and compatible narratives of “anthropatriarchy” and Hindu patriarchy. Anthropatriarchy is framed as the human enactment of gendered oppressions upon animal bodies, and is crucial to sustaining all animal agriculture. Hindu patriarchy refers to the instrumentalization of female and feminized bodies (women, cows, “Mother India”) as “mothers” and cultural guardians of a “pure” Hindu civilization. Both patriarchies commodify bovine motherhood and breastmilk. which this article frames as a feminist issue. Through empirical research, this article demonstrates that gaushalas generally function as spaces of exploitation, incarceration, and gendered violence for the animals. The article broadens posthumanist feminist theory to illustrate how bovine bodies, akin to women's bodies, are mobilized as productive, reproductive, and symbolic capital to advance Hindu extremism and ultranationalism. It subjectifies animal bodies as landscapes of nation‐making using ecofeminism and its subfield of vegan feminism.     

Understanding and Improving the Effectiveness of After-School Practice

The question driving research on after‐school programs is shifting from “do programs make a difference,” to “why are some programs effective while others are not?” This article draws on the work in this volume and related studies to suggest that there is an emerging consensus on the importance of staff‐youth interactions as a determinant of program effectiveness. The commentary recommends that future research should continue to focus on understanding and improving program practices at the point‐of‐service. In doing so, two lines of inquiry seem promising. The first involves linking measures of changes in staff‐youth interactions to changes in developmental outcomes. The second is to examine how policies or other interventions intended to improve program effectiveness affect the practices of line staff.     

Co-research: A new methodology for new times

This article describes an innovative methodology based on inter-organizational collaboration between academics and practitioners, using a “co-research” method that builds on but goes beyond the methodology of insider/outsider research teams. Co-research establishes a dialectical process of enquiry by drawing on the complementary perspectives, interests, skills, and knowledge bases of academics and practitioners. Co-research is based on a triad of research roles. First, the academic responsible for the research, who manages the research team and who contributes an “outsider” view of the organization. Second, the host manager employed by the organization being researched. This person brings an “insider” perspective on the organization. Third, the co-researcher from a different organization who carries out the research alongside the academic(s). He or she is an “insider” in that they are familiar with the type of organization being researched, but an “outsider” in that their own organization has a different context and processes. This article argues that co-research is effective in producing valid organizational research, partly through the harnessing of inside/outsider knowledge and partly through “surprise and sense-making” (Louis, 1980). The research paradigm is one of knowledge generation through a negotiated and dialectical approach to organizational processes.     

Young People's Experiences of Participation in Clinical Trials: Reasons for Taking Part

Given the lack of knowledge about safety and efficacy of many treatments for children, pediatric clinical trials are important, but recruitment for pediatric research is difficult. Little is known about children's perspective on participating in trials. The purpose of this study was to understand the experiences and motivations of young people who took part in clinical trials. This is a qualitative interview study of 25 young people aged 10–23 who were invited to take part in clinical trials. Interviews were audio or video recorded and analyzed using framework analysis. Young peoples' motivations were both personal benefit and helping others. Both incentives appeared to be more complex than expected. We introduce the terms “network of exchange” and “intergenerational solidarity” to describe these motivations. To improve recruitment, professionals should be more open about research opportunities, provide better information, and give young people feedback after the trial has ended.     

Homelessness and dual diagnosis.

People who are dually diagnosed with severe mental illness and substance use disorders constitute 10%-20% of homeless persons. They are a heterogeneous and extremely vulnerable subgroup with complex, poorly understood needs. In this article recent research on the epidemiology, subject characteristics, and service needs of the dually diagnosed homeless population is reviewed. Also, the range of evolving approaches to providing social services, housing, and mental health and substance-abuse treatments; the relevant system issues and legal issues; and problems with current research, as well as future research directions, are discussed. The importance of the distinction between providing appropriate living environments and mental health treatments emerges throughout.     

Qualitative Health Research and the IRB: Answering the “So What?” with Qualitative Inquiry

Qualitative inquiry is increasingly used to foster change in health policy and practice. Research ethics committees often misunderstand qualitative inquiry, assuming its design can be judged by criteria of quantitative science. Traditional health research uses scientific realist standards as a means-to-an-end, answering the question “So what?” to support the advancement of practice and policy. In contrast, qualitative inquiry often draws on constructivist paradigms, generating knowledge either as an end-in-itself or as a means to foster change. When reviewers inappropriately judge qualitative inquiry, it restricts the ways health phenomena can be understood. Qualitative inquiry is necessary because it enables an understanding not possible within scientific explanation. When such research illuminates, it can also shed light onto the “So what?” In order to ensure an appraisal of qualitative inquiry congruent with its paradigmatic premises, we suggest the “Illumination Test,” met when findings foster rich understanding of phenomena, resulting in a reflective “aha!”     

Chimpanzees as vulnerable subjects in research

Using an approach developed in the context of human bioethics, we argue that chimpanzees in research can be regarded as vulnerable subjects. This vulnerability is primarily due to communication barriers and situational factors—confinement and dependency—that make chimpanzees particularly susceptible to risks of harm and exploitation in experimental settings. In human research, individuals who are deemed vulnerable are accorded special protections. Using conceptual and moral resources developed in the context of research with vulnerable humans, we show how chimpanzees warrant additional safeguards against harm and exploitation paralleling those for human subjects. These safeguards should include empowering third parties to act as surrogate decision makers for chimpanzees, ensuring participant “assent,” and avoiding recruitment of animal subjects based merely on convenience.     

The perils of protection: vulnerability and women in clinical research

Subpart B of 45 Code of Federal Regulations Part 46 (CFR) identifies the criteria according to which research involving pregnant women, human fetuses, and neonates can be conducted ethically in the United States. As such, pregnant women and fetuses fall into a category requiring “additional protections,” often referred to as “vulnerable populations.” The CFR does not define vulnerability, but merely gives examples of vulnerable groups by pointing to different categories of potential research subjects needing additional protections. In this paper, I assess critically the role of this categorization of pregnant women involved in research as “vulnerable,” both as separate entities and in combination with the fetuses they carry. In particular, I do three things: (1) demonstrate that pregnant women qua pregnancy are either not “vulnerable” according to any meaningful definition of that term or that such vulnerability is irrelevant to her status as a research participant; (2) argue that while a fetus may be vulnerable in terms of dependency, this categorization does not equate to the vulnerability of the pregnant woman; and (3) suggest that any vulnerability that appends to women is precisely the result of federal regulations and dubious public perceptions about pregnant women. I conclude by demonstrating how this erroneous characterization of pregnant women as “vulnerable” and its associated protections have not only impeded vital research for pregnant women and their fetuses, but have also negatively affected the inclusion of all women in clinical research.     

Ethical Implications of Using the Term “Non-white” in Psychological Research

Psychologists have long been concerned with the welfare and competent treatment of underserved populations. However, terminology used in psychological research is not always conducive to cultural sensitivity. This article discusses why the term “non-white” may be less sensitive to diverse populations and provides practical alternatives to this nomenclature. In addition, the authors examine the literature from 2008 to 2012 to establish whether the term “non-white” is still used to describe populations in psychological research. The article concludes with several recommendations for how researchers could choose to proceed in regards to identifying populations using culturally sensitive and relevant language.     

The Management of Disclosure in Children’s Accounts of Domestic Violence: Practices of Telling and Not Telling

Children and young people who experience domestic violence are often represented as passive witnesses, too vulnerable to tell the stories of their own lives. This article reports on findings from a 2 year European research project (Understanding Agency and Resistance Strategies, UNARS) with children and young people in Greece, Italy, Spain and the UK, who had experienced domestic violence. It explores children and young people’s understandings of their own capacity to reflect on and disclose their experiences Extracts from individual interviews with 107 children and young people (age 8–18) were analysed. Three themes are presented, that illustrate children and young people’s strategies for managing disclosure: (1) “Being silenced or choosing silence?”, explores children and young people’s practices of self-silencing; (2) “Managing disclosures: Finding ways to tell” outlines how children and young people value self-expression, and the strategies they use to disclose safely; and in (3) “Speaking with many voices” considers how children and young people’s accounts of their experiences are constituted relationally, and are often polyvocal. The article concludes that children and young people can be articulate, strategic and reflexive communicators, and that good support for families struggling with domestic violence must enable space for children and young people’s voice to be heard. This is possible only in an integrated framework able to encompass multiple layers and perspectives, rather than privileging the adult point of view. Practitioners who work with families affected by domestic violence need to recognize that children and young people are able to reflect on and speak about their experiences. This requires that attention is paid to the complexity of children and young people’s communication practices, and the relational context of those communications.     

Praying for Rain?: A Rastafari Perspective from Zimbabwe

Climate change remains one of the most enigmatic questions that humanity urgently needs to address. Emanating from the ecological crisis, climate change threatens the survival of some species (including humanity) and the depletion of natural resources. The situation is deplorable, but arguably religion/spirituality can contribute to meeting the challenge. This study explores a Zimbabwean Rastafari perspective on praying for rain against the backdrop of climate change. The article posits that praying for rain is integral to Rastafari “livity” and liturgical life. Among other pertinent questions, the study asks: What is the value Rastafarians accord to nature? How do Rastafarians pray for rain? Do they take responsibility for the environment? The research concludes that Rastafarians operate as post–20th‐century Nazarenes, where prayer is a practical and tangible manifestation of work that is crucial to living harmoniously with nature. Rastafari “green philosophy” is a practical spiritual consciousness that decisively complements global efforts of shared responsibility for nature in the context of the climate change crisis.     

Sustained Empathic Focus and the Creation of a “We Space” Revisited in the Light of Recent Findings in Neurobiology

This article is an attempt to expand our understanding of the curative process with an emphasis on the group therapy setting. It presents a self psychological approach that underlines the importance of a “sustained empathic focus” on each patient’s subjective experience and the creation of what we have referred to as shared “vulnerable moments” and a “we-space.” The relationship of our approach to recent findings in the field of neurobiology is then considered.