BackgroundFear of cancer recurrence is an important cause of suffering for cancer survivors, and both empirical evidence and theoretical models suggest that prognostic uncertainty plays a causal role in its development. However, the relationship between prognostic uncertainty and FCR is incompletely understood.ObjectiveTo explore the relationship between prognostic uncertainty and FCR among patients with ovarian cancer.DesignA qualitative study was conducted utilizing individual in-depth interviews with a convenience sample of patients with epithelial ovarian cancer who had completed first-line treatment with surgery and/or (...) chemotherapy. Semi-structured interviews explored participants’ understanding of their prognosis; experiences, preferences, and attitudes regarding prognostic information; and strategies for coping with prognostic uncertainty. Inductive qualitative analysis and line-by-line software-assisted coding of interview transcripts was conducted to identify key themes and generate theoretical insights on the relationship between prognostic uncertainty and FCR.ResultsThe study sample consisted of 21 participants, nearly all of whom reported experiencing significant FCR, which they traced to an awareness of the possibility of a bad outcome. Some participants valued and pursued prognostic information as a means of coping with this awareness, suggesting that prognostic uncertainty causes FCR. However, most participants acknowledged fundamental limits to both the certainty and value of prognostic information, and engaged in various strategies aimed not at reducing but constructing and maintaining prognostic uncertainty as a means of sustaining hope in the possibility of a good outcome. Participants’ comments suggested that prognostic uncertainty, fear, and hope are connected by complex, bi-directional causal pathways mediated by processes that allow patients to cope with, construct, and maintain their uncertainty. A provisional dual-process theoretical model was developed to capture these pathways.ConclusionAmong patients with OC, prognostic uncertainty is both a cause and an effect of FCR—a fear-inducing stimulus and a hope-sustaining response constructed and maintained through various strategies. More work is needed to elucidate the relationships between prognostic uncertainty, fear, and hope, to validate and refine our theoretical model, and to develop interventions to help patients with OC and other serious illnesses to achieve an optimal balance between these states. (shrink)

Background Over the last decade, the return of results (ROR) in precision medicine research (PMR) has become increasingly routine. Calls for individual rights to research results have extended the “duty to report” from clinically useful genetic information to traits and ancestry results. ROR has thus been reframed as inherently beneficial to research participants, without a needed focus on who benefits and how. This paper addresses this gap, particularly in the context of PMR aimed at increasing participant diversity, by providing investigator (...) and researcher perspectives on and questions about the assumed value of ROR in PMR.Methods Semi-structured interviews with a purposive sample of investigators and researchers across federally funded PMR studies in three national consortia, as well as observations of study activities, focused on how PM researchers conceptualize diversity and implement inclusive practices across research stages, including navigating ROR.Results Interviewees (1) validated the value of ROR as a benefit of PMR, while others (2) questioned the benefit of clinically actionable results to individuals in the absence of sufficient resources for translating findings into health care for diverse and disadvantaged populations; (3) expressed uncertainties in applying the presumed value of ROR as a benefit for non-clinical results; and (4) and debated when the promise of the value of ROR may undermine trust in PMR, and divert efforts to return value beyond ROR.Conclusions Conceptualizations of diversity and inclusion among PM researchers and investigators raise unique ethical questions where unexamined assumptions of the value of ROR inform study recruitment efforts to enroll minoritized and under-represented populations. A lack of consideration for resources and infrastructure necessary to translate ROR into actionable information may hinder trustworthy community-research relationships. Thus, we argue for a more intentional interrogation of ROR practices as an offer of benefit and for whom. (shrink)

Detailed and in-depth investigation of the important but often unappreciated work done by science technicians, in this case in the context of paleontology.

Results: We analyzed 1,402 surveys and 15 in-depth interviews. Many (32%) CL participants reported greater difficulty refilling medications and a minority (14%) reported greater difficulty accessing HIV care during the pandemic. Most (99%) Opt4Mamas participants reported no difficulty refilling medications or accessing HIV/pregnancy care. Among the CL participants, older women were less likely (aOR = 0.95, 95% CI: 0.92–0.98) and women with more children were more likely (aOR = 1.13, 95% CI: 1.00–1.28) to report difficulty refilling medications. Only 2% of (...) CL participants reported greater difficulty managing FP and most (95%) reported no change in likelihood of using FP or desire to get pregnant. Qualitative analysis revealed three major themes: (1) adverse organizational/economic implications of the pandemic, (2) increased importance of pregnancy prevention during the pandemic, and (3) fear of contracting COVID-19. (shrink)

Human development takes place in a social context. Two pervasive sources of social information are faces and hands. Here, we provide the first report of the visual frequency of faces and hands in the everyday scenes available to infants. These scenes were collected by having infants wear head cameras during unconstrained everyday activities. Our corpus of 143 hours of infant-perspective scenes, collected from 34 infants aged 1 month to 2 years, was sampled for analysis at 1/5 Hz. The major finding (...) from this corpus is that the faces and hands of social partners are not equally available throughout the first two years of life. Instead, there is an earlier period of dense face input and a later period of dense hand input. At all ages, hands in these scenes were primarily in contact with objects and the spatio-temporal co-occurrence of hands and faces was greater than expected by chance. The orderliness of the shift from faces to hands suggests a principled transition in the contents of visual experiences and is discussed in terms of the role of developmental gates on the timing and statistics of visual experiences. (shrink)

The purpose of this paper is to examine the linkages and relationships between the officially prescribed school ethos and that which emerges from social interaction. Qualitative data drawn from one Grant-Maintained-Integrated and one Catholic primary school in Northern Ireland show how school ethos, defined as the observed practices and interactions of school members, often departs considerably from school ethos defined as those values and beliefs which the school officially supports. On the basis of the data it is argued that much (...) of what we understand of school ethos is superficial and contradictory. With this in mind the paper concludes by presenting a new angle on ethos which, when taken in conjunction with the other perspectives, further enhances our understanding of how schools work. (shrink)

How do children acquire beliefs from testimony? In this chapter, we discuss children's trust in testimony, their sensitivity to and use of defeaters, and their appeals to positive reasons for trusting what other people tell them. Empirical evidence shows that, from an early age, children have a tendency to trust testimony. However, this tendency to trust is accompanied by sensitivity to cues that suggest unreliability, including inaccuracy of the message and characteristics of the speaker. Not only are children sensitive to (...) evidence of unreliability, but they are also sensitive to the positive reasons a speaker may have for the reliability of their testimony. This evidence is discussed in relation to reductivist and non-reductivist viewpoints. (shrink)

Osteoporosis, a disease of bone loss associated with aging and estrogen loss, can be crippling but is ‘silent’ prior to bone fracture. Despite its disastrous health effects, high prevalence, and enormous associated health care costs, osteoporosis lacked a universally accepted definition until 1992. In the 1980s, the development of more accurate medical imaging technologies to measure bone density spurred the medical community’s need and demand for a common definition. The medical community tried, and failed, to resolve these differing definitions several (...) times at consensus conferences and through published articles. These experts finally accepted a standard definition at an international consensus conference convened by the World Health Organization in 1992. The construction of osteoporosis as a disease of quantifiable risk diagnosed by medical imaging machines reflects contemporary trends in medicine, including the quantification of disease, the risk factor model, medical disciplinary boundaries, and global standardization of medical knowledge. (shrink)

A major challenge in neuroscience is to understand what happens to a brain as it ages. Such insights could make it possible to distinguish between individuals who will undergo typical aging and those at risk for neurodegenerative disease. Over the last quarter century, thousands of human brain imaging studies have probed the neural basis of age-related cognitive decline. “Aging” studies generally enroll adults over the age of 65, a historical precedent rooted in the average retirement age of U.S. wage-earners. A (...) consequence of this research tradition is that it overlooks one of the most significant neuroendocrine changes in a woman’s life: the transition to menopause. The menopausal transition is marked by an overall decline in ovarian sex steroid production – up to 90% in the case of estradiol – a dramatic endocrine change that impacts multiple biological systems, including the brain. Despite sex differences in the risk for dementia, the influence that biological sex and sex hormones have on the aging brain is historically understudied, leaving a critical gap in our understanding of the aging process. In this Perspective, we highlight the influence that endocrine factors have on the aging brain. We devote particular attention to the neural and cognitive changes that unfold in the middle decade of life, as a function of reproductive aging. Next, we consider emerging evidence from animal and human studies that other endocrine factors occurring earlier in life (e.g. pregnancy, hormonal birth control use) also shape the aging process. Applying a women’s health lens to. (shrink)

Over the past decade, Canadian media coverage of street sex work has steadily increased. The majority of this interest pertains to graphic violence against street sex workers, most notably from Vancouver, British Columbia. In this article, the authors analyze newspaper coverage that appeared in western Canadian publications between 2006 and 2009. In theorizing the violence both depicted and perpetrated by newspapers, the authors propose an analytic framework capable of attending to the process of othering in all of its complexity. To (...) this end, the authors supplement a Foucauldian analysis of abjection by considering the work of Judith Butler along with Julia Kristeva's conceptualization of abjection. Using excerpts from western Canadian newspapers, the authors illustrate how the media's discursive practices function as triggers for the process of cultural abjection by inscribing street sex workers with images of defilement. The authors argue that newspaper coverage of street sex workers reinforces the inviolability of normalized life by constantly reiterating the horror reserved for abjected bodies. (shrink)

Expert nurses, as described by the work of Patricia Benner, are at the peak of clinical nursing practice and vitally important in ensuring the best possible patient care and clinical outcomes. The development of Benner's theory and its relationship with the Dreyfus model of skill acquisition provides context for understanding the progression necessary for expert development. Contemporary healthcare challenges present implications to the development of advancing levels of nursing practice. Engagement has been identified as critical to achieving expert practice. I (...) propose the incorporation of the philosophical framework of self‐appropriation from Benard Lonergan as a strategy to develop internal engagement in nurses to facilitate expert practice. I outline the synergy between Benner's theory and the work of Lonergan, which provide overlap and opportunity to overcome barriers to developing expert nursing practice. In the challenging climate of healthcare, there is an obligation to promote engagement and facilitate expert nurse development, necessary for patient outcomes as well as clinical role models, preceptors, and leaders to guide future nurses. (shrink)

In the United States, social media organizations are not legally liable for what users do or say on their platforms and are free to regulate expression in any way they see fit. As a result, dark co...

One of the key criticisms of the ethical review process is the time taken to decision, and associated resource use. A key source of delay is that most submissions are required to respond to at leas...

In this paper, Caitlin Murphy Brust and Rebecca Taylor examine the responsibilities of college educators to resist conditions of epistemic injustice within their institutions. Pedagogy alone cannot bring about epistemic justice in higher education, for no individual epistemic agent can single-handedly transform their epistemic environment. The roots of such injustices are structural and thus require structural interventions. However, college educators do retain some agency to engage in epistemic resistance. Brust and Taylor argue that they can and should take steps (...) to foster just relations within the epistemic communities of their classrooms — calling for pedagogy that both recognizes the unjust features of the broader epistemic environment and responds to the unique forms of epistemic injustice that manifest in the classroom, with particular attention to seminar-style courses. (shrink)

This paper defines and analyzes the processes of “othering” as they manifest in the practice and praxis of nursing education. Othering is bound up in the establishment and reinforcement of norms, and shores up power inequities that negatively impact faculty, students, and patients. While previous analyses have addressed othering in nursing more broadly, this paper adds a consideration of the multiple processes of othering that operate within the context of nursing education spaces. Cases from recent nursing education literature are interpreted (...) through the frameworks of exclusionary, inclusionary, and structural othering, and provide specific illustrations of the concepts described. The paper concludes by arguing for an application of norm‐critical pedagogical practice to counteract, disrupt and dismantle othering processes within nursing education. (shrink)

Philosophers of science are well aware that theories are underdetermined by data. But what about the data? Scientific data are selected and processed representations or pieces of nature. What is useless context and what is valuable specimen, as well as how specimens are processed for study, are not obvious or predetermined givens. Instead, they are decisions made by scientists and other research workers, such as technicians, that produce different outcomes for the data. Vertebrate fossils provide a revealing case of this (...) data-processing, because they are embedded in rock that often matches the fossils’ color and texture, requiring an expert eye to judge where the fossil/context interface is. Fossil preparators then permanently define this interface by chiseling away the material they identify as rock. As a result, fossil specimens can emerge in multiple possible forms depending on the preparator’s judgment, skill, and chosen tools. A prepared fossil then is not yet data but potential data, following Leonelli’s relational framework in which data are defined as evidence that scientists have used to support a proposed theory. This paper draws on ethnographic evidence to assess how scientists overcome this underdetermination of specimens, as potential data, in addition to the underdetermination of theories and of data, to successfully construct specimen-based knowledge. Among other strategies, paleontology maintains a division of labor between data-makers and theory-makers. This distinction serves to justify the omission of preparators’ nonstandard, individualized techniques from scientific publications. This separation has benefits for both scientists and technicians; however, it restricts knowledge production by preventing scientists from understanding how the pieces of nature they study were processed into researchable specimens. (shrink)

The amygdala is a key brain area regulating responses to stress and emotional stimuli, so improving our understanding of how it is regulated could offer novel strategies for treating disturbances in emotion regulation. As we review here, a growing body of evidence indicates that the gut microbiota may contribute to a range of amygdala-dependent brain functions from pain sensitivity to social behavior, emotion regulation, and therefore, psychiatric health. In addition, it appears that the microbiota is necessary for normal development of (...) the amygdala at both the structural and functional levels. While further investigations are needed to elucidate the exact mechanisms of microbiota-to-amygdala communication, ultimately, this work raises the intriguing possibility that the gut microbiota may become a viable treatment target in disorders associated with amygdala dysregulation, including visceral pain, post-traumatic stress disorder, and beyond. Also see the video abstract here: https://youtu.be/O5gvxVJjX18 The amygdala plays a central role in regulating many aspects of behavior in rodents and humans, from pain responding to social interaction and psychiatric function. Accumulating evidence suggests microbiota-to-amygdala communication along the gut-brain axis is a key modulator of these amygdala-dependent behaviors, with critical implications for health and disease. (shrink)

Design bioethics provides a promising framework for incorporating technological design into bioethics research and education. Beyond the development of digital empirical tool...

Osteoporosis, a disease of bone loss associated with aging and estrogen loss, can be crippling but is 'silent' prior to bone fracture. Osteoporosis lacked a universally accepted definition until 1992. In the 1980s, the development of more accurate medical imaging technologies to measure bone density spurred the medical community's need and demand for a common definition. The medical community tried, and failed, to resolve these differing definitions several times at consensus conferences and through published articles. These experts finally accepted a (...) standard definition at an international consensus conference convened by the World Health Organization in 1992. The construction of osteoporosis as a disease of quantifiable risk diagnosed by medical imaging machines reflects contemporary trends in medicine, including the quantification of disease, the risk factor model, medical disciplinary boundaries, and global standardization of medical knowledge. (shrink)

The “headscarf affair,” Muslim girls wearing veils to school, has generated a storm of controversy in France. This study uses the headscarf affair to explore Muslim immigrant women's views of their place in French society and reveals that even those who disagree with French public opinion often invoke arguments that are more French than North African. Interviews with 41 North African women show that younger, well-educated women defend the headscarf as a matter of personal liberty and cultural expression. Older, poorly (...) educated women either defend or reject the veil but never discuss the issue of secularism. In dismissing the veil, they rely on a different understanding of Muslim womanhood. A third group opposes the veil, arguing that the goal of school is integration. Respondents' answers are interpreted according to structural factors and cultural repertoires, both North African and French. (shrink)

BackgroundReturning neuroimaging incidental findings may create a challenge to research participants’ health literacy skills as they must interpret and make appropriate healthcare decisions based on complex radiology jargon. Disclosing IF can therefore present difficulties for participants, research institutions and the healthcare system. The purpose of this study was to identify the extent of the health literacy challenges encountered when returning neuroimaging IF. We report on findings from a retrospective survey and focus group sessions with major stakeholders involved in disclosing IF.MethodsWe (...) surveyed participants who had received a radiology report from a research study and conducted focus groups with participants, parents of child participants, Institutional Review Board members, investigators and physicians. Qualitative thematic analyses were conducted using standard group-coding procedures and descriptive summaries of health literacy scores and radiology report outcomes are examined.ResultsAlthough participants reported high health literacy skills, 67 % did not seek medical care when recommended to do so; and many participants in the focus groups disclosed they could not understand the findings described in their report. Despite their lack of understanding, participants desire to have information about their radiology results, and the investigators feel ethically inclined to return findings.ConclusionsThe language in clinically useful radiology reports can create a challenge for participants’ health literacy skills and has the potential to negatively impact the healthcare system and investigators conducting imaging research. Radiology reports need accompanying resources that explain findings in lay language, which can help reduce the challenge caused by the need to communicate incidental findings. (shrink)

The disciplines of ethics, science, and the law often conflict when it comes to determining the limits and boundaries of embryo research. Under current Australian law and regulations, and in various other jurisdictions, research conducted on the embryo in vitro is permitted up until day fourteen, after which, the embryo must be destroyed. Reproductive technology and associated research is rapidly advancing at a rate that contests current societal and ethical limits surrounding the treatment of the embryo. This has brought about (...) the question of the adequacy of the fourteen-day rule and whether it is necessary for it be reconsidered and reformed. This paper will highlight some of the tensions that exist in ethics, science, and the law in relation to the extension of the rule. It will be concluded that any move to extend the rule must be accompanied by close consultation with the public as the ultimate stakeholders in how the future of reproductive technology is created, constructed, and contested. (shrink)

The desire to maintain current beliefs can lead individuals to evaluate contrary evidence more critically than consistent evidence. We test whether priming individuals’ scientific reasoning...

The authors of the articles in this issue of The Journal of Medicine and Philosophy address a wide variety of topics, from definitions of disease to bioenhancement. Each author, however, draws out the importance of careful use of language. Over the years, philosophers of medicine and bioethicists have debated questions such as what qualifies something as a disease, whether disease language is evaluative, whether the term “person” encompasses more than just human beings, and what language ought to be used to (...) best convey complex information to patients. Among a great deal of disagreement on these topics, one thing emerges distinctly: that clarity and careful attention to language is paramount in medicine. The articles in this issue contribute to that conversation, presenting complex arguments and illustrative examples of why it is so important to use clear and well-defined terms in medicine, and of the reality-altering power that our language carries. (shrink)

In mining, manufacturing and industrial process industries, maintenance procedures are used as an aid to guide technicians through complex manual tasks. These procedures are not machine-readable, and cannot support reasoning in digitally integrated manufacturing systems. Procedure documents contain unstructured text and are stored in a variety of formats. The aim of this work is to query information held in real industrial maintenance procedures. To achieve this, we develop an ontology for maintenance procedures using the OWL 2 description language. We leverage (...) classes and object properties from the ISO 15926 Part 14 Upper Ontology and create a domain ontology. The key contribution of this paper is a demonstration of trade-offs required when modelling an existing engineering artifact, where an abstraction of its contents is given a-priori. We provide an ontologically rigorous abstraction of notions captured in procedure documentation to a set of classes, relations and axioms that allow reasoning over the contents. Validation of the ontology is performed via a series of competency questions based on queries relevant to technicians, engineers and schedulers in industry. The ontology is applied to real world maintenance procedures from two industrial organisations. (shrink)

Legislating comprehensive sex education curricula has long been believed to be essential to aligning education about sex, sexuality and human relationships with the values of equality, inclusivity and autonomy. Defences of the need for ‘good’ sex education in public schools are contingent upon arguments about whose experiences ought to guide us in determining what sufficient alignment with such values might look like. The aim of this paper is to explore the assumptions underlying one prevailing norm in such defences: what I (...) call parental deference or the practice of heeding to the rights of parents in debates about sex education. The question at the heart of this paper is, then, who in our communities does this deference exclude? I begin with a brief consideration of the appeal of parental deference within theories of education in general, and sex education in particular, before problematising its normalisation through a consideration of the exclusions such deference creates. In the process, I aim to explore the limits of parental deference for addressing the intersection of sexuality, sex, gender and race with violence in curricula and argue instead that one way of mitigating the consequences of these limits is to take seriously what I call sex education's community problem: If schools are to serve communities, why are so many community members’ experiences excluded? (shrink)

A research community must share assumptions, such as about accepted knowledge, appropriate research practices, and good evidence. However, community members also hold some divergent assumptions, which they—and we, as analysts of science—tend to overlook. Communities with different assumed values, knowledge, and goals must negotiate to achieve compromises that make their conflicting goals complementary. This negotiation guards against the extremes of each group’s desired outcomes, which, if achieved, would make other groups’ goals impossible. I argue that this diversity, as a form (...) of value pluralism, regularly influences scientific practice and can make scientific evidence and knowledge more useful and more reliable. As an example, I examine vertebrate paleontology laboratories, which house a variety of workers with different training and priorities, particularly about the meaning of time. Specifically, scientists want to study fully prepared fossils immediately, conservators want to preserve fossils for future use, and preparators mediate between the other groups’ conflicting goals. After all, one cannot study a fossil encased in rock, and one cannot remove that rock without removing information from that specimen. In response, these coworkers articulate their assumptions in everyday deliberations about how scientific evidence should be made and used. I argue that this exchange of assumptions is crucial for a research community to achieve mutually beneficial compromises that benefit current and future knowledge construction. (shrink)

The nurse perspective is critical in survey research investigating various aspects of healthcare services, staff, and patient outcomes. Researchers are responsible for ensuring that survey research utilizing survey questionnaires employs research methodological strategies that are aligned with the ethical principles of beneficence, respect for persons, and justice. The purpose of this paper is to discuss best practices to facilitate high-quality survey data collection for nurse survey participants. Recommendations are based on the fundamental ethical principles described in the Belmont Report, an (...) overview of evidence published in the current literature, and the application of practical knowledge. Literature searches conducted in PubMed resulted in the inclusion of over 50 articles from a wide range of disciplines. The results include actionable methods for researchers to consider and follow when conducting survey research utilizing nurse participants. This article serves as a resource to guide researchers through ethically responsible design, implementation, and reporting of nurse survey research. (shrink)

My mother died within the first few months of the pandemic. Her sudden and rapid decline from Alzheimer's disease is difficult to separate from the COVID-19 restrictions put in place by her nursing home just two months prior. We went from visiting her daily to not at all, then to a strictly enforced twenty-minute hospice visit to say goodbye. After her passing, and still amidst the pandemic, I could not write. The conventional methods and outputs of bioethics inquiry felt impossible.Making (...) art is the only thing that felt possible then. Perhaps that's the function of art, to make things feel more possible. I began by collecting materials from work—package inserts, empty prescription bottles and gelatin capsules—to... (shrink)

This multidisciplinary book brings together a series of critical engagements regarding the notion of ethical practice. As a whole, the book explores the question of how the current neo-liberal socio-political moment, and its relationship to the historical legacies of colonialism, white settlement, and racism, informs and shapes our practices, pedagogies, and understanding of encounters in diverse settings. Drawing largely on the work of Sara Ahmed’s Strange Encounters: Embodied Others in Post-Coloniality, each chapter in this book takes up a particular encounter (...) and unravels the elements that created these meetings in specific times and spaces. Sites of encounters included in this volume range from the classroom to social work practice and from literary to media interactions, and take place both within Canada and internationally. Paramount to the discussions is a consideration of how relations of power and legacies of oppression shape self and others, and draw boundaries between bodies within an encounter. From a social justice perspective, Unravelling Encounters exposes the political conditions that configure our meetings with one another, and inquires into what it means to care, to respond, and to imagine oneself as an ethical subject. (shrink)