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)

Down syndrome (DS) impacts several brain regions including the hippocampus and surrounding structures that have responsibility for important aspects of navigation and wayfinding. Hence it is reasonable to expect that DS may result in a reduced ability to engage in these skills. Two experiments are reported that evaluated route-learning of youth with DS, youth with intellectual disability (ID) and not DS, and typically developing (TD) children matched on mental age (MA). In both experiments, participants learned routes with eight choice point (...) presented via computer. Several objects were placed along the route that could be used as landmarks. Participants navigated the route once with turn indicators pointing the way and then retraced the route without them. In Experiment 1 we found that the TD children and ID participants performed very similarly. They learned the route in the same number of attempts, committed the same number of errors while learning the route, and recalled approximately the same number of landmarks. The participants with DS performed significantly worse on both measures of navigation (attempts and errors) and also recalled significantly fewer landmarks. In Experiment 2, we attempted to reduce TD and ID vs DS differences by focusing participants’ attention on the landmarks. Half of the participants in each group were instructed to identify the landmarks as they passed them the first time. The participants with DS again committed more errors than the participants in the ID and TD groups in the navigation task. In addition, they recalled fewer landmarks. While landmark identification improved landmark memory for both groups, it did not have a significant impact on navigation. Participants with DS still performed more poorly than did the TD and ID participants. Of additional interest, we observed that the performance of persons with DS correlated with different ability measures than did the performance of the other groups. The results the two experiments point to a problem in navigation for persons with DS that exceeds expectations based solely on intellectual level. (shrink)

In this essay Megan J. Laverty argues that Jean-Jacques Rousseau's conception of humane communication and his proposal for teaching it have implications for our understanding of the role of listening in education. She develops this argument through a close reading of Rousseau's most substantial work on education, Emile: Or, On Education. Laverty elucidates Rousseau's philosophy of communication, beginning with his taxonomy of the three voices—articulate, melodic, and accentuated—illustrating the ways in which they both enhance and obfuscate understanding. Next, Laverty (...) provides an account of Rousseau's philosophical psychology, with specific reference to amour-propre and amour de soi. Listening plays a central role in Rousseau's philosophy of communication, Laverty maintains, because it is in the act of listening that humans fulfill, or fail to fulfill, the imperative that we seek to understand others. (shrink)

Zusammenfassung Genuss spielt in ethischen Annäherungen an die Pflege bisher noch keine bedeutende Rolle. Dabei zeigen philosophische und theologische Ansätze wie die von Emmanuel Lévinas, Ina Praetorius und Corine Pelluchon die grundlegende Bedeutung von Leiblichkeit, Genährtwerden und Genuss auf. Ebenso werden Momente des sinnlichen Genusses im Pflegealltag sowohl von Pflegekräften als auch von Gepflegten als sinnstiftend erlebt. Momente des Genusses können sich sowohl während der Pflege selbst ereignen als auch in Momenten, die über pflegerische Tätigkeiten im engeren Sinne hinausgehen. Genuss (...) steht dabei in Zusammenhang mit Wohlbefinden, Lebensqualität, Glück und Gesundheit. Auch wenn Genuss der Gesundheit zuträglich sein kann, liegt in Momenten des Genusses selbst ein Zweck, der sich der Funktionalisierung entzieht. Eine Ethik des Genusses, die theoretische Ansätze und die Erfahrungen aus dem Pflegealltag miteinander verbindet, kann die Wahrnehmung von Pflege und die theoretische wie empirische Erforschung von Pflege bereichern. Der vorliegende Beitrag bietet hierzu eine ethische Einordnung des Themas und einen thesenartigen Aufschlag zu einer Ethik des Genusses in der Pflege. (shrink)

Elizabeth Lanphier and Uchenna E. Anani provide a powerful argument for the value of a trauma-informed approach to the ethics consultation, which acknowledges the perspectives of all stakeho...

Ethics courses are most commonly evaluated using reaction measures. However, little is known about the specific types of reaction data being collected and how these reaction data relate to improvements in trainee performance. Using a sample of 381 ethics training sessions, major reaction data categories were identified. Content and course satisfaction were the most frequently collected types of reaction criteria. Furthermore, content relevance and course satisfaction showed strong, positive relationships with performance criteria, whereas content satisfaction demonstrated a moderate, negative relationship. (...) These results and future directions for ethics training evaluation are discussed. (shrink)

An ethical dilemma exists regarding client referral. Standards 2.01(b) (Boundaries of Competence) and 3.01 (Unfair Discrimination) of the American Psychological Association's Ethical Principles of Psychologists Code of Conduct provide psychologists with contradictory reasons to take possibly conflicting and incompatible courses of action when considering whether to refer a client. The professional literature that has explored the benefits of referring clients when the psychologist does not believe that he or she is able to work with the client's presenting concern, however, has (...) failed to examine the times in which referring may not be appropriate and, more specifically, may be an act of discrimination. This article seeks to initiate the discussion around this issue. (shrink)

Contemporary theories of Virtue Ethics are often presented as being in opposition to Kantian Ethics and Consequentialism. It is argued that Virtue Ethics takes as fundamental the question, “What sort of character would a virtuous person have?” and that Kantian Ethics and Consequentialism take as fundamental the question, “What makes an action right?” I argue that this opposition is misconceived. The opposition is rather between Virtue Ethics and Kantian Ethics on the one hand and Consequentialism on the other. The former (...) two are concerned with, respectively, the development of a virtuous character and a good will, whereas Consequentialism is essentially a doctrine that just provides a justification of the right option without specifying how this is to be achieved. Furthermore, I show that Consequentialism, interpreted as a justificatory doctrine, is both an impoverished doctrine and one that cannot be enriched by taking a “pick and mix” approach to other ethical theories in the way that Consequentialists advocate. I argue that there is at least one reason to prefer Kantian Ethics: Kantian Ethics necessarily avoids the objection of selfcenteredness, whereas the avoidance of this objection is only contingent in the case of Virtue Ethics. (shrink)

Although scientific images have begun to receive significant attention from philosophers, one type of image has thus far been ignored: moving images. As techniques such as live cell imaging and videomicroscopy are becoming increasingly important in many areas of biology, however, this oversight needs to be corrected. Biologists often claim that there are relevant differences between video and static images. Most interesting is the idea that video images allow us to see causal relationships. By identifying the conditions that would be (...) required for this to be true and showing that they are not satisfied at the micro level, I will show that videomicroscopy does not provide us with special access to causal information. †To contact the author, please write to: Department of Philosophy, University of Calgary, 2500 University Dr. NW, Calgary, Alberta T2N 1N4; e-mail: [email protected]. (shrink)

Moral distress has been characterised in the nursing literature as a major problem affecting nurses in all healthcare systems. It has been portrayed as threatening the integrity of nurses and ultimately the quality of patient care. However, nursing discourse on moral distress is not without controversy. The notion itself is conceptually flawed and suffers from both theoretical and practical difficulties. Nursing research investigating moral distress is also problematic on account of being methodologically weak and disparate. Moreover, the ultimate purpose and (...) significance of the research is unclear. In light of these considerations, it is contended that the notion of moral distress ought to be abandoned and that concerted attention be given to advancing inquiries that are more conducive to improving the quality and safety of moral decision-making, moral conduct and moral outcomes in nursing and healthcare domains. (shrink)

This book brings together an international collection of experts in reproductive ethics, law, disability studies, and medicine to explore the challenging future of reproduction and children. From the medical to the social and from the financial to the legal, the authors explore the expanding impact of reproductive genetics on our society. New advances in genetic technologies are revolutionizing the practice of reproductive medicine. We have expanded our ability to detect genetic changes in embryos and fetuses in ways that potentially allow (...) to identify, treat, or prevent a growing range of diseases. The development of gene-editing technologies raises questions about the possibility of removing disease-causing variants from embryos before pregnancy implantation. The growing sophistication of prenatal genomic sequencing offers us glimpses into the whole genome of the developing fetus. And, the increasingly sophisticated science of 'gene matching' allows us greater and greater foreknowledge of how the genomes of two individuals will combine in a future child. This is an indispensable book on the newest developments in bioethics caused by the sciences. Chapter 5 is available open access under a Creative Commons Attribution 4.0 International License via link.springer.com. (shrink)

To write about the disease of breast cancer from both scientific and spiritual perspectives is to reflect upon our genetic and spiritual ancestry. We examine the issues involved in breast cancer at the intersections of spirituality, technology, and science, using the fundamental thing we know about being human: our bodies. Our goal in this essay is to offer close readings of women's spiritual and bodily journeys through the disease of breast cancer. We have discovered that both illness and health come (...) within the stories of particular people and particular disciplines. And to learn more about breast cancer, both scientific and spiritual aspects, one must be attentive to such particularities. Medicine and religion are bodily experiences, and being a body-self is what it means to be human. (shrink)

Driving is central to adult independence and autonomy; yet most autistic young adults do not acquire driver’s licenses. It is important to understand barriers to achieving this milestone for autistic adults. Differences in negative affect and emotion dysregulation associated with autism may interfere with managing difficult driving situations. The current study compared perceived driving difficulty, emotion dysregulation, and negative affect in emerging drivers with and without autistic traits, and investigated how emotion dysregulation and negative affect relate to perceived DD. We (...) expected greater perceived DD, emotion dysregulation, and negative affect in participants with AT and a positive correlation of perceived DD with both emotion dysregulation and negative affect in the whole sample. Thirty-seven adolescents and young adults self-reported perceived DD in 15 scenarios and completed the Difficulty in Emotion Dysregulation Scale and the Depression, Anxiety, and Stress Scale. Autistic participants scored significantly higher on mean perceived DD, DERS Impulse subscale, DASS total and DASS Stress subscale scores. Perceived DD positively correlated with the DERS and DASS total scores, all DASS subscales, and DERS Nonacceptance, Goals, and Impulse subscales across the whole sample. The findings highlight the roles of emotion dysregulation and negative affect in perceived DD in emerging drivers with AT. In particular, emotional stress and impulsivity may map onto mechanisms of over-reactivity to negative affect and explain why autistic people perceive particular situations as difficult when driving. Implications and directions for future research are discussed. (shrink)

Abortion prohibitions in some states include carve-outs based on the medical condition of either the mother or the fetus. These carve-outs, however, may be couched in limiting language structured by legislators rather than in language understandable in the context of medical care. In circumstances where legislative bodies fail to adequately incorporate medical professionals in the drafting of medical laws, the resulting vagueness or ambiguity may lead to a lack of utility or viability. This paper considers the consequences of such legislative (...) misreading of medicine. It does so with a particular example, Utah’s abortion trigger law, 2020 Senate Bill 174 (S.B. 174). S.B. 174 was enacted in 2020 (currently enjoined pending the outcome of _Planned Parenthood Association of Utah v. State of Utah_) and includes an exception for serious fetal anomaly—in other words, disability. While Utah is not alone in its inclusion of a disability exception for abortion, S.B. 174 is unique in the language it uses to carve out this exception: the law requires that the fetus has a “uniformly diagnosable and uniformly lethal” defect. This article explores the medical-legal mismatch in S.B. 174 through an analysis of the statute’s legislative history and its language, an academic and legal database review, and an application of the statutory language to multiple serious genetic diagnoses. In doing so, this paper unpacks just how mismatched these terms are and reveals the massive gap the law will leave between the legal consequences and the medical realities of abortion. (shrink)

Gaze behavior is an important component of children’s language, cognitive, and sociocultural development. This is especially true for young deaf children acquiring a signed language—if they are not looking at the language model, they are not getting linguistic input. Deaf caregivers engage their deaf infants and toddlers using visual and tactile strategies to draw in, support, and promote their child’s visual attention; we argue that these caregiver actions create a developmental niche that establishes the visual modality capital their child needs (...) for successful sign language learning. But most deaf children do not have deaf signing parents and they will need to rely on adult signing teachers if they are to acquire a signed language at an early age. This study examines classroom interactions between a Deaf teacher, her teacher’s aide, and six deaf preschoolers to document the teachers’ “everyday practices” as they socialize the gaze behavior of these children. Utilizing a detailed behavioral and linguistic analysis of two video-recorded book-sharing contexts, we present data summarizing the teacher’s attention-getting actions directed toward the children and the discourse-embedded cues that signal the teacher’s expectations for student participation in the signed conversation. We observed that the teacher’s behaviors differed according to the parent status of the deaf preschooler suggesting that Deaf children of Deaf parents arrive to the preschool classroom with well-developed self-regulation of their attention or gaze. The teachers also used more physical and explicit cueing with the deaf children of hearing parents—possibly to promote their ability to leverage the visual modality for sign language acquisition. We situate these socialization patterns within a framework that integrates notions of intuitive or indigenous practices, developmental niche, and modality capital. Implications for early childhood deaf education are also discussed. (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)

Informed consent is the gateway to research participation. We report on the results of the formative evaluation that follows the electronic informed consent process for the All of Us Research Program. Of the nearly 250,000 participants included in this analysis, more than 95% could correctly answer questions distinguishing the program from medical care, the voluntary nature of participation, and the right to withdraw; comparatively, participants were less sure of privacy risk of the program. We also report on a small mixed-methods (...) study of the experience of persons of very low health literacy with All of Us informed consent materials. Of note, many of the words commonly employed in the consent process were unfamiliar to or differently defined by informants. In combination, these analyses may inform participant-centered development and highlight areas for refinement of informed consent materials for the All of Us Research Program and similar studies. (shrink)

The Dutch microbiologist/biochemist Albert Jan Kluyver was an early proponent of the idea of biochemical unity, and how that concept might be demonstrated through the careful study of microbial life. The fundamental relatedness of living systems is an obvious correlate of the theory of evolution, and modern attempts to construct phylogenetic schemes support this relatedness through comparison of genomes. The approach of Kluyver and his scientific descendants predated the tools of modern molecular biology by decades. Kluyver himself is poorly recognized (...) today, yet his influence at the time was profound. Through lens of today however, it has been argued that the focus by Kluyver and others to create taxonomic and phylogenetic schemes using morphology and biochemistry distorted and hindered progress of the discipline of microbiology, because of a perception that the older approaches focused too much on a reductionist worldview. This essay argues that in contrast the careful characterization of fundamental microbial metabolism and physiology by Kluyver made many of the advances of the latter part of the twentieth century possible, by offering a framework which in many respects anticipated our current view of phylogeny, and by directly and indirectly training a generation of scientists who became leaders in the explosive growth of biotechnology. (shrink)

While scholars of, and participants in, social movements, electoral politics, and organized labor are deeply engaged in contrasting different theories of how political actors should organize, little recent philosophical work has asked what social organizing is. This paper aims to answer this question in a way that can make sense of typical organizing- related claims and debates. It is intuitive that what social organizing does is bring about some kind of collectivity. However, I argue that the varieties of collectivity most (...) amply theorized by analytic philosophers in recent years, including grouphood and collective intentionality, are not the right kinds to embed in a theory of social organizing. I ultimately argue that the sort of collectivity that organizing characteristically brings about is a special kind of causal complementarity among agents’ actions— and that while this can exist alongside grouphood and collective intentionality, it is not the same thing as either. The notion of social organizing that emerges is one that can clarify, without trivializing, a number of pressing contemporary debates about how normal people should conduct themselves as interconnected political actors. (shrink)

ABSTRACT This article investigates drawing as a form of devotional attention. Engaging with the work of María Lugones and examples from Josef Albers, Corita Kent, Franz Opalka, Georgia O’Keeffe, and William Kentridge, each section revolves around drawing in relation to embodied practices of being together with others. In addition to a personal account of memories and rituals of drawings, this article examines the degree to which drawing hones a pragmatic sense for fallibility, fluidity, and open-ended research, while arguing for drawing (...) as a form of commitment to community that challenges historical associations of creativity with individualistic or uninhibited freedom. (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 ...

In this contribution to the Common Knowledge symposium “Fuzzy Studies,” the authors, all of whom work in the field of science, technology, and society, begin from the assumption that, as Bruno Latour has put it, “we have never been modern.” They accept the STS thesis that, while modern practices purport to be entirely rational and coherent, on closer inspection they turn out to be as much noncoherent as coherent. This article poses the question of what forms “noncoherences” take and how (...) they are managed. The basic argument is that there is a range of styles of noncoherence or “modes of syncretism.” In small case studies, the authors identify six such modes or styles, which they term denial, domestication, separation, care, conflict, and collapse. Given that consistency and coherence seem less important now than they were once taken to be — and given that the conditions of possibility for purity are, in any case, in decline — this list and its supporting case studies, while not meant to be definitive, are offered as a way of understanding how practices that do not cohere may still function and fit together admirably. (shrink)

BackgroundThe proper and ethical inclusion of PWLHIV and their young children in research is paramount to ensure valid evidence is generated to optimize treatment and care. Little empirical data exists to inform ethical considerations deemed most critical to these populations. Our study aimed to systematically review the empiric literature regarding ethical considerations for research participation of PWLHIV and their young children.MethodsWe conducted this systematic review in partnership with a medical librarian. A search strategy was designed and performed within the following (...) electronic databases: Ovid MEDLINE, Embase and CINAHL. We screened titles and abstracts using the following inclusion criteria: (1) a study population of PWLHIV or children under 5 years of age; and (2) collection of qualitative or quantitative data regarding ethics of research participation. Excluded were reviews, commentaries, policy statements, clinical care-related ethics concerns, abstracts, case studies, or studies unrelated to HIV research. Studies were appraised for quality, data were extracted, and studies were qualitatively analyzed using a principle-based ethical framework within the Belmont Report.ResultsOf the 7470 titles identified, 538 full-text articles were reviewed for eligibility and only three articles met full criteria for inclusion within this review. While we allowed for inclusion of studies involving young children born to mothers with HIV, only articles focused on PWLHIV were identified. Within the results of these studies, four themes emerged: (1) adequacy of informed consent; (2) consideration of paternal involvement; (3) balancing risks; and (4) access to research and treatment. A strength of this review is that it included perspectives of international research investigators, community leaders, and male partners. However, only two studies collected empiric data from PWLHIV regarding their experiences participating in researchConclusionResearchers and funding agencies should be aware of these considerations and appreciate the value of and critical need for formative research to ensure clinical trials involving PWLHIV promote ethical, well-informed research participation and, ultimately, improve care outcomes. More research is needed to create a comprehensive ethical framework for researchers when conducting studies with PWLHIV. (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...

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...

Richard Stanley Peters appreciates the centrality of concepts for everyday life, however, he fails to recognize their pedagogical dimension. He distinguishes concepts employed at the first-order (our ordinary language-use) from second-order conceptual clarification (conducted exclusively by academically trained philosophers). This distinction serves to elevate the discipline of philosophy at the expense of our ordinary language-use. I revisit this distinction and argue that our first-order use of concepts encompasses second-order concern. Individuals learn and teach concepts as they use them. Conceptual understanding (...) is an obligation that all individuals, and not just academically trained philosophers, must fulfil. I conclude that the role of philosophy in education is to provide a conversational context for the pedagogical dimension of concepts. I draw upon the philosophies of Cora Diamond, Stephen Mulhall, Iris Murdoch and Rush Rhees. (shrink)