This article presents a review of the literature, summarizes current initiatives, and provides a heuristic for assessing the effectiveness of a range of institutional review board collaborative strategies that can reduce the regulatory burden of ethics review while ensuring protection of human subjects, with a particular focus on international research. Broad adoption of IRB collaborative strategies will reduce regulatory burdens posed by overlapping oversight mechanisms and has the potential to enhance human subjects protections.

Children in foster care are considered a “vulnerable population” in clinical care and research, with good reason. These children face multiple medical, psychological, and social risks that obligate the child welfare and healthcare systems to protect them from further harms. An unintended consequence of the “vulnerable population” designation for children in foster care is that it may impose barriers on tracking and studying their health that creates gaps in knowledge that are key to their receipt of medical care and good (...) outcomes. These gaps in knowledge have implications for justice, beneficence, and maleficence and serve to undermine “protection” of this population. Here we review the challenges of research regarding children in foster care, particularly medically complex children, and offer specific recommendations to include children in foster care in medical research. (shrink)

The primary purpose of Institutional Review Boards (IRBs) is to protect the rights and welfare of human research participants. Evaluation and measurement of how IRBs satisfy this purpose and other important goals are open questions that demand empirical research. Research on IRBs, and the Human Research Protection Programs (HRPPs) of which they are often a part, is necessary to inform evidence-based practices, policies, and approaches to quality improvement in human research protections. However, to date, HRPP and IRB engagement in empirical (...) research about their own activities and performance has been limited. To promote engagement of HRPPs and IRBs in self-reflective research on HRPP and IRB quality and effectiveness, barriers to their participation need to be addressed. These include: extensive workloads, limited information technology systems, and few universally accepted or consistently measured metrics for HRPP/irb quality and effectiveness. Additionally, institutional leaders may have concerns about confidentiality. Professional norms around the value of participating in this type of research are lacking. Lastly, obtaining external funding for research on IRBs and HRPPs is challenging. As a group of HRPP professionals and researchers actively involved in a research consortium focused on IRB quality and effectiveness, we identify potential levers for supporting and encouraging HRPP and IRB engagement in research on quality and effectiveness. We maintain that this research should be informed by the core principles of patient- and community-engaged research, in which members and key stakeholders of the community to be studied are included as key informants and members of the research team. This ensures that relevant questions are asked and that data are interpreted to produce meaningful recommendations. As such, we offer several ways to increase the participation of HRPP professionals in research as participants, as data sharers, and as investigators. (shrink)

For much of their history, the relationship between anthropology and psychology has been well captured by Robert Frost's poem, “Mending Wall,” which ends with the ironic line, “good fences make good neighbors.” The congenial fence was that anthropology studied what people think and psychology studied how people think. Recent research, however, shows that content and process cannot be neatly segregated, because cultural differences in what people think affect how people think. To achieve a deeper understanding of the relation between process (...) and content, research must integrate the methodological insights from both anthropology and psychology. We review previous research and describe new studies in the domain of folk biology which examine the cognitive consequences of different conceptualizations of nature and the place of humans within it. The focus is on cultural differences in framework theories among Native Americans and European American children and adults living in close proximity in rural Wisconsin. Our results show that epistemological orientations affect memory organization, ecological reasoning, and the perceived role of humans in nature. This research also demonstrates that cultural differences in framework theories have implications for understanding intergroup conflict over natural resources and are relevant to efforts to improve science learning, especially among Native American children. (shrink)

This paper provides an analysis of U.S. farmland owners, operators, and workers by race, ethnicity, and gender. We first review the intersection between racialized and gendered capitalism and farmland ownership and farming in the United States. Then we analyze data from the 2014 Tenure and Ownership Agricultural Land survey, the 2012 Census of Agriculture, and the 2013–2014 National Agricultural Worker Survey to demonstrate that significant nation-wide disparities in farming by race, ethnicity and gender persist in the U.S. In 2012–2014, White (...) people owned 98% and operated 94% of all farmland. They generated 98% of all farm-related income from land ownership and 97% of income from farm owner-operatorship. Meanwhile, People of Color farmers were more likely to be tenants rather than owners, owned less land, and generated less farm-related wealth per person than their White counterparts. Hispanic farmers were also disproportionately farm laborers. In addition to racial and ethnic disparities, there were disparities by gender. About 63% of non-operating landowners, 86% of farm operators, and 87% of tenant farmers were male, and female farmers tended to generate less income per farmer than men. This data provides evidence of ongoing racial, ethnic and gender disparities in agriculture in the United States. We conclude with a call to address the structural drivers of the disparities and with recommendations for better data collection. (shrink)

Pickering, Newton-Howes, and Young assert that the traditional view of decisional capacity, premised on assessing patients’ abilities to communicate, understand, appreciate,...

A currently popular proposal for fairly distributing emission quotas is the equal shares view, which holds that that emission quotas should be distributed to all human beings globally on an equal per capita basis. In this paper I aim to show that a number of arguments in favour of equal shares are based on a misleading analysis of climate change as a global commons problem. I argue that a correct understanding of the way in which climate change results from the (...) overuse of a global commons shows those who defend equal shares using commons arguments to be harbouring more controversial commitments than might at first appear. I then discuss two options for equal shares theorists who wish to maintain the view in the face of my critique, and attempt to show that one approach holds more promise than the other. (shrink)

BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related risks, (...) as well as intrinsic goals such as promoting the respect of participants and their community. However, successful community engagement depends on the degree to which CABs legitimately represent and engage with communities targeted for research. Currently, there is little literature describing the use of CABs in genomics research taking place in developing countries, and even less in the field of genomics research relating to mental illness. The aim of this article is to describe and consider the contributions made by a researcher-driven, population-specific CAB in a genomics of schizophrenia research project taking place in South Africa, from the perspective of the research team.DiscussionFour broad discussion topics emerged during the CAB meetings namely: 1) informed consent procedures, 2) recruitment strategies, 3) patient illness beliefs and stigma experiences, and 4) specific ethical concerns relating to the project. The authors consider these discussions in terms of their contributions to instrumental and intrinsic goals of community engagement.SummaryThe CAB gave valuable input on the consent processes and materials, recruitment strategies and suggested ways of minimizing the potential for stigma and discrimination. All of these contributions were of an instrumental nature, and helped improve the way in which the research took place. In addition, and perhaps more importantly, the CAB made a unique and important contribution relating to intrinsic functions such as promoting the respect and dignity of research participants and their community. This was particularly evident in ensuring sensitivity and respect of the community’s traditional beliefs about schizophrenia and its treatment, and in this way promoting a respectful relationship between the research team and the participants. (shrink)

In this paper, we examine clothing and material fibers as affective elements that function as witnesses to a structure of power. Specifically, we consider them as material bystanders of the human’s...

McCarthy and Howard (2023) advocate for supported decision making for patients with intellectual and developmental disabilities (IDD). Departing from the “mental prosthesis” model of supported deci...

Business Ethics: A European Review, EarlyView.

This article examines the issues that are at stake in the current resurgence of interest in the subject of habit. We focus on the role that habit has played in conceptions of the relations between body and society, and the respects in which such conceptions have been implicated in processes of governance. We argue that habit has typically constituted a point of leverage for regulatory practices that seek to effect some realignment of the relations between different components of personhood – (...) will, character, memory and instinct, for example – in order to bring about a specific end. In reviewing its functioning in this regard across a range of modern disciplines – philosophy, psychology, sociology – we explore the tensions between its use and interpretation in different lineages: in particular, the Cartesian–Kantian/ravaisson–bergson–deleuze lineages. The article then identifies how these questions are addressed across the contributions collected in this special issue. (shrink)

Shavelson and colleagues (2023) describe how medical aid-in-dying laws in the United States prohibit assistance in administering aid-in-dying medication. This prohibition distinguishes aid in dying...

Les études sur l’Obéissance à l’Autorité (OtA) de Milgram ont depuis longtemps été comprises comme démontrant que les gens ont une tendance à suivre aveuglément les ordres de l’autorité. Plus récemment, nous avons proposé un modèle d’obéissance basé sur le suivisme engagé (engaged followership), qui suggère que la décision d’une personne d’accepter les requêtes d’une figure d’autorité est basée sur son identification avec cette personne et/ou la cause qu’elle représente. Dans cet article, nous présentons nos raisons de soutenir cette perspective (...) et faisons le point sur les éléments empiriques dont nous disposons actuellement pour la soutenir. Nous indiquons également quelles questions restent posées, et posons ainsi les bases d’un programme pour des recherches futures. (shrink)

Kolbe and de Melo-Martin (2023) describe fatal problems in current definitions and measurement of moral distress and injury (MD/I) in medical professionals, which impede development of genuine atte...

Here are two widely held positions on the ethics of dating: First, people are generally morally justified in excluding people they don’t find attractive from their dating pool. Second, people are not justified in maintaining a dating pool that is racially exclusive, even on grounds like attraction. In this paper, we demonstrate how these positions are consistent. To do so we differentiate our attitudes in dating and our dating behavior. Then we show how existing criticisms of racialized attitudes in dating (...) are incomplete as practical criticisms of our behavior. Finally, we give our account of the moral reasons whites have to change their dating preferences when they exclude people of color. In doing so, we supplement existing discussions of race-based discrimination in dating. (shrink)

As members of the fetal surgery advisory board at a large tertiary care center, we read with great interest Hendriks’ et al. target article proposing a new ethical framework for fetal therap...

En el siguiente artículo se recoge una singular mirada del lenguaje, desde una dimensión pragmática que sintetiza aportes relativos a la eficacia del lenguaje en la obra agustiniana. Desde un enfoque centrado en la responsabilidad y la autoapropiación de la acción lingüística, Agustín de Hipona se vierte a la detección de mecanismos volitivos y cognitivos que intervienen en los modos de uso e intercambio verbal para elaborar una singular y compleja reflexión sobre responsabilidad lingüística. Entre las relaciones y consecuencias más (...) visibles de cada acto de habla en específico, expone cómo en la enunciación se conjugan múltiples variables de raíces profundas, que no solo están conectadas con la dimensión del ethos, sino que contribuyen a su constitución y determinación cotidiana para una reflexión comunitaria. Por lo que el siguiente análisis ético-discursivo a los escritos del filósofo de Hipona conjugará estos aspectos y habilitará la apreciación de una noción de responsabilidad verbal basada en fundamentos de performatividad del lenguaje y sentido de transmisión en sus obras. (shrink)

Dynamic Consent is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data protection law. The DC tool is flexible and responsive, enabling legal and ethical requirements in research data sharing to be met and for online health (...) information to be maintained. DC has been used in rare diseases and genomics, to enable people to control and express their preferences regarding their own data. However, DC has never been explored in relationship to historical collections of bioscientific and genetic heritage or to contexts involving Aboriginal and Torres Strait Islander people.In response to the growing interest by First Peoples throughout Australia in genetic and genomic research, and the increasing number of invitations from researchers to participate in community health and wellbeing projects, this article examines the legal and ethical attributes and challenges of DC in these contexts. It also explores opportunities for including First Peoples' cultural perspectives, governance, and leadership as a method for defining DC on cultural terms that engage best practice research and data analysis as well as respect for meaningful and longitudinal individual and family participation. (shrink)

Developmental origins of health and disease and epigenetics have expanded understanding of how the environment affects the health of women before and during pregnancy—with lifelong health consequences for the fetus. This has translated to a narrow focus on women’s lifestyle during pregnancy, especially for women classified as obese. In this study, we show that psychosocial harms such as distress or shame felt by pregnant women are rarely countenanced in these endeavors. To demonstrate this, we examine published documents about a large (...) set of trials of lifestyle interventions united through an international consortium. Yet there is now a literature in which pregnant women with large bodies report feeling humiliated and a wider literature on the stigma of obesity. We argue that shame is produced and reproduced through the discursive and material knowledge-making scientific practices of DOHaD translation. Interventions that intensify the shame of large body size in pregnancy may be stressful, and neurophysiological stress pathways are well-known within DOHaD to have consequences for fetal development, so these interventions potentially undermine the very processes they set out to protect. A feminist response may protect women from shame and redirect attention to the social and structural determinants of health. (shrink)

We were interested to read the current target article, given our admiration for the senior author’s comprehensive coverage of these same topics a decade ago (Donley, Hul...

In this target article by Morain and Largent (2023), the authors focus on an investigator’s duty to patient-subjects specifically regarding incidental or collateral findings within the context of e...

In January 2016, Medicare began reimbursing clinicians for time spent engaging in advance care planning with their patients or patients’ surrogates. Such planning involves discussions of the care an individual would want to receive should he or she one day lose the capacity to make health care decisions or have conversations with a surrogate about, for example, end‐of‐life wishes. Clinicians can be reimbursed for face‐to‐face explanation and discussion of care and advance directives and for the completion of advance care planning (...) forms. Although it seems that political barriers to reimbursement for such planning have largely faded, the Medicare policy's impact on provider billing practices appears to be limited, suggesting other barriers to clinician engagement in advance care planning. Additionally, the effects of this policy on patient behavior and the clinician‐patient relationship are not yet known. (shrink)

This paper argues that common social narratives about unhealthy eaters can cause significant damage to agency. I identify and analyze a narrative that combines a “control model” of eating agency with the healthist assumption that health is the ultimate end of eating. I argue that this narrative produces and enables four types of damage to the agency of those identified as unhealthy eaters. Due to uncertainty about what counts as healthy eating and various forms of prejudice, the unhealthy eater label (...) and its harms to agency are more likely to stick to some people than others and may reinforce patterns of oppression. I argue that fat people are especially vulnerable to this identification and the damage it can do. I then consider possible “counterstories” about unhealthy eaters, alternative narratives that might be less damaging to agency than the control narrative. I identify one promising counterstory but suggest that it may be limited when it comes to repairing damage to the agency of fat people. Overall, this paper illustrates some of the complex ways that healthism about eating affects agency, and emphasizes the ethical importance of the ways we think about and discuss eating and eaters. (shrink)

Given that many imaging technologies in biology and medicine are non-optical and generate data that is essentially numerical, it is a striking feature of these technologies that the data generated using them are most frequently displayed in the form of semi-naturalistic, photograph-like images. In this paper, I claim that three factors underlie this: (1) historical preferences, (2) the rhetorical power of images, and (3) the cognitive accessibility of data presented in the form of images. The third of these can be (...) argued to provide an epistemic advantage to images, but I will further argue that this is often misleading and that images can in many cases be less informative than the corresponding mathematical data. (shrink)

Reductionism is a central issue in the philosophy of biology. One common objection to reduction is that molecular explanation requires reference to higher-level properties, which I refer to as the context objection. I respond to this objection by arguing that a well-articulated notion of a mechanism and what I term mechanism extension enables one to accommodate the context-dependence of biological processes within a reductive explanation. The existence of emergent features in the context could be raised as an objection to the (...) possibility of reduction via this strategy. I argue that this objection can be overcome by showing that there is no tenable argument for the existence of emergent properties that are not susceptible to a reductive explanation. (shrink)

Equity in health and health care is animportant issue. It has been proposed that thepursuit of equity in health care is beinghampered by the dominance of individualism inhealth care practices. This paper explores theway in which communitarian ideals and practicesmight lend themselves to the pursuit of equity.Communitarians acknowledge, respect and fosterthe bonds that unite and identify communities.The paper argues that, to achieve equity inhealth care, these bonds need to be recognisedand harnessed rather than ignored. The notionof individual autonomy in the (...) context of thecommunity is examined. Alternative concepts ofautonomy – social autonomy and communityautonomy – are seen to be more respectful andnurturing of both the individual and thecommunity. Moreover, these concepts appeardesirable for the pursuit of health care equitygoals. The paper concludes with some thoughtsabout how equity in Australia's health caresystem can reasonably progress within acommunitarian vision. Disadvantaged communitiesare discussed throughout, in particular,Australian Aboriginal communities. (shrink)

According to a well-established tradition in the philosophy of language, we can understand what makes an arbitrary sound, gesture, or marking into a meaningful linguistic expression only by appealing to mental states, such as beliefs and intentions. In this paper, I explore the contrasting possibility of understanding the meaningfulness of linguistic expressions just in terms of observable linguistic behavior. Specifically, I explore the view that a type of sound becomes a meaningful linguistic expression within a group in virtue of the (...) production of that type of item becoming that group’s widespread, copied way of getting others to involve an object or relation in their activity. After discussing a preliminary version of the view, I develop it in response to some key concerns about whether it really does, as a matter of fact, eschew mental states, and about its adequacy as an account of linguistic meaning. (shrink)

As the first of its kind this collection draws together cutting edge scholarship in the field, focusing on the theory and practice of yoga in contemporary times ...