This case is part of a series of case studies used as an exercise within a program on research ethics education. The case involves research on genetic birth defects in a culturally distinct, closed religious community in which elders speak for the community. The case raises ethical issues of informed consent in such a setting; of collaboration with the community; of conflicts between the researchers’ responsibilities to the community as a whole and to individual subjects; of the impact of the (...) researcher’s findings on the practices and values of the community and issues regarding how the researchers share findings with subjects and how the findings are stored. (shrink)

Technology has expanded genomic research and the complexity of extracted gene-related information. Health-related genomic incidental findings pose new dilemmas for nurse researchers regarding the ethical application of disclosure to participants. Consequently, informed consent specific to incidental findings is recommended. Critical Social Theory is used as a guide in recognition of the changing meaning of informed consent and to serve as a framework to inform nursing of the ethical application of disclosure consent in genomic nursing research practices.

Background Biobank participants often do not understand much of the information they are provided as part of the informed consent process, despite numerous attempts at simplifying consent forms and improving their readability. We report the first assessment of biobank enrollees’ comprehension under an "integrated consent” process, where patients were asked to enroll in a research biobank as part of their normal healthcare experience. A number of healthcare systems have implemented similar integrated consent processes for biobanking, but it is unknown how (...) much patients understand after enrolling under these conditions. Methods: We recruited patients who enrolled in a biobank while in a healthcare setting when receiving ordinary care. We assessed knowledge of consent materials using 11 true/false questions drawn from a well-known biobank knowledge test. After reviewing the results from 114 participants, we revised the consent form and repeated the knowledge assessment with 144 different participants. Results: Participants scored poorly on the knowledge test in both rounds, with no significant differences in overall scores or individual items between the rounds. In Phase 1, participants answered 53% of the questions correctly, 25% incorrectly, and 22% “I don’t know.” In Phase 2, participants answered 53% of questions correctly, 24% incorrectly, and 23% “I don’t know.” Participants scored particularly poorly on questions about data sharing and accessing medical records. Conclusions: Enrollees under an integrated consent model had significant misunderstandings that persisted despite an attempt to improve information specifically about those topics in a consent form. These results raise challenges for current approaches that attribute misunderstanding to overly complex consent forms. They also suggest that the pressures of the clinic may compound other problems with patient understanding of biobank consent. As health systems increasingly blend research and care, they may need to rethink their approach to educating patients about participation in a biobank. (shrink)

Emotion recognition skills and the ability to understand the mental states of others are crucial for normal social functioning. Conversely, delays and impairments in these processes can have a profound impact on capability to engage in, maintain, and effectively regulate social interactions. Therefore, this study aimed to compare the performance of 42 autistic children, 45 unaffected siblings, and 41 typically developing controls on the Affect Recognition and Theory of Mind subtests of the Developmental Neuropsychological Assessment Battery. There were no significant (...) differences between siblings and TD controls. Autistic children showed significantly poorer performance on AR when compared to TD controls and on TOM when compared to both TD controls and unaffected siblings. An additional comparison of ASD, unaffected sibling and TD control subsamples, matched on full-scale IQ, revealed no group differences for either AR or TOM. AR and TOM processes have received less research attention in siblings of autistic children and remain less well characterized. Therefore, despite limitations, findings reported here contribute to our growing understanding of AR and TOM abilities in siblings of autistic children and highlight important future research directions. (shrink)

This article is the lead piece in a special report that presents the results of a bioethical investigation into chimeric research, which involves the insertion of human cells into nonhuman animals and nonhuman animal embryos, including into their brains. Rapid scientific developments in this field may advance knowledge and could lead to new therapies for humans. They also reveal the conceptual, ethical, and procedural limitations of existing ethics guidance for human‐nonhuman chimeric research. Led by bioethics researchers working closely with an (...) interdisciplinary work group, the investigation focused on generating conceptual clarity and identifying improvements to governance approaches, with the goal of helping scholars, funders, scientists, institutional leaders, and oversight bodies (embryonic stem cell research oversight [ESCRO] committees and institutional animal care and use committees [IACUCs]) deliver principled and trustworthy oversight of this area of science. The article, which focuses on human‐nonhuman animal chimeric research that is stem cell based, identifies key ethical issues in and offers ten recommendations regarding the ethics and oversight of this research. Turning from bioethics’ previous focus on human‐centered questions about the ethics of “humanization” and this research's potential impact on concepts like human dignity, this article emphasizes the importance of nonhuman animal welfare concerns in chimeric research and argues for less‐siloed governance and oversight and more‐comprehensive public communication. (shrink)

In 1993, debates over mandatory HIV testing reemerged in New York when politicians and journalists launched a compaign to “unblind” results of a survey of HIV prevalence in newborns. This article reports on the findings from a content analysis of 108 “Baby AIDS” news stories published in New York newspapers in 1993 and 1994. In constructing a discourse of blame for the infection of “innocent” babies, “Baby AIDS” news stories demonstrate that racist, heterosexist, and sexist assumptions about HIV transmission, motherhood, (...) and public HIV surveillance are fundamentally intertwined. The article concludes that arguments by AIDS analysts that homophobia and racism are distinct and independent dimensions of policy and popular understandings of HIV are not only misguided but also dangerous. (shrink)

In Photography and Japan, Karen Fraser argues that the diversity of styles, subjects, and functions of Japanese photography precludes easy categorization along nationalized lines. Instead, she shows that the development of photography within Japan is best understood by examining its close relationship with the country’s dramatic cultural, political, and social history. Photography and Japan covers 150 years of photography, a period in which Japan has experienced some of the most significant events in modern history and made a remarkable transformation (...) from an isolated, feudal country into an industrialized, modern world power—a transformation that included a striking rise and fall as an imperial power during the first half of the twentieth century and a miraculous economic recovery in the decades following the devastation of World War II. The history of photography has paralleled these events, becoming inextricably linked with notions of modernity and cultural change. Through thematic chapters that focus on photography’s role in negotiating cultural identity, war, and the documentation of urban life, Photography and Japan introduces many images that will be unfamiliar to Western viewers and provides a broadened context for those photos that are better known. (shrink)

The primitive streak establishes the antero‐posterior body axis in all amniote species. It is thought to be the conduit through which mesoderm and endoderm progenitors ingress and migrate to their ultimate destinations. Despite its importance, the streak remains poorly defined and one of the most enigmatic structures of the animal kingdom. In particular, the posterior end of the primitive streak has not been satisfactorily identified in any species. Unexpectedly, and contrary to prevailing notions, recent evidence suggests that the murine posterior (...) primitive streak extends beyond the embryo proper. In its extraembryonic site, the streak creates a node‐like cell reservoir from which the allantois, a universal caudal appendage of all amniotes and the future umbilical cord of placental mammals, emerges. This new insight into the fetal/umbilical relationship may explain the etiology of a large number of umbilical‐associated birth defects, many of which are correlated with abnormalities of the embryonic midline. (shrink)

Ethics codes define societal expectations for individual and institutional moral conduct and performance. This volume of fourty case studies considers nearly every facet of professional archival work--from appraisal and administration to reference and the work of archivists. It offers advice concerning how archivists resolve moral conflicts and the impact on the relationship to the public, the quality of archival work, and professional satisfaction.

Although databases have been well-defined and thoroughly discussed in the computer science literature, the actual users of databases often have varying definitions and expectations of this essential computational infrastructure. Systems administrators and computer science textbooks may expect databases to be instantiated in a small number of technologies, but there are numerous examples of databases in non-conventional or unexpected technologies, such as spreadsheets or other assemblages of files linked through code. Consequently, we ask: How do the materialities of non-conventional databases differ (...) from or align with the materialities of conventional relational systems? What properties of the database do the creators of these artifacts invoke in their rhetoric describing these systems—or in the data models underlying these digital objects? To answer these questions, we conducted a close analysis of four non-conventional scientific databases. By examining the materialities of information representation in each case, we show how scholarly communication regimes shape database materialities—and how information organization paradigms shape scholarly communication. These cases show abandonment of certain constraints of relational database construction alongside maintenance of some key relational data organization strategies. We discuss the implications that these relational data paradigms have for data use, preservation, and sharing, and discuss the need to support a plurality of data practices and paradigms. (shrink)

We hypothesised that belief in conspiracy theories would be predicted by the general tendency to attribute agency and intentionality where it is unlikely to exist. We further hypothesised that this tendency would explain the relationship between education level and belief in conspiracy theories, where lower levels of education have been found to be associated with higher conspiracy belief. In Study 1 participants were more likely to agree with a range of conspiracy theories if they also tended to attribute intentionality and (...) agency to inanimate objects. As predicted, this relationship accounted for the link between education level and belief in conspiracy theories. We replicated this finding in Study 2, whilst taking into account beliefs in paranormal phenomena. These results suggest that education may undermine the reasoning processes and assumptions that are reflected in conspiracy belief. (shrink)

Interest is growing in the relocalization of staple crops, including wheat, in western Washington (WWA), a nontraditional wheat-growing area. Commercial bakers are potentially important food chain intermediaries in the case of relocalized wheat production. We conducted a mail survey of commercial bakers in WWA to assess their interest in sourcing wheat/flour from WWA, identify the characteristics of bakeries most likely to purchase wheat/flour from WWA, understand the factors important to bakers in purchasing regionally produced wheat/flour, and identify perceived barriers to (...) making such purchases. Sixty-one percent of survey respondents were interested in purchasing WWA wheat/flour. Bakers who used retail strategies to market their products were more likely to be interested in WWA wheat/flour compared to those not using retail methods. Bakers’ current purchases of Washington wheat/flour were not related to their interest in purchasing WWA flour. The most important factors bakers would consider in purchasing regionally produced wheat/flour were consistency of flour quality, quality of flour, and reliability of supply. Cost was the most frequently mentioned barrier to the purchase of regionally produced wheat/flour. Our results are relevant for other areas attempting to reconnect grain producers, commercial bakers, and consumers in mutually beneficial ways. (shrink)

Negative prognostic communication is often delayed in intensive care units, which limits time for families to prepare for end‐of‐life. This descriptive study, informed by ethnographic methods, was focused on exploring critical care physician communication of negative prognoses to families and identifying timing influences. Prognostic communication of critical care physicians to nurses and family members was observed and physicians and family members were interviewed. Physician perception of prognostic certainty, based on an accumulation of empirical data, and the perceived need for decision‐making, (...) drove the timing of prognostic communication, rather than family needs. Although prognoses were initially identified using intuitive knowledge for patients in one of the six identified prognostic categories, utilizing decision‐making to drive prognostic communication resulted in delayed prognostic communication to families until end‐of‐life (EOL) decisions could be justified with empirical data. Providers will better meet the needs of families who desire earlier prognostic information by separating prognostic communication from decision‐making and communicating the possibility of a poor prognosis based on intuitive knowledge, while acknowledging the uncertainty inherent in prognostication. This sets the stage for later prognostic discussions focused on EOL decisions, including limiting or withdrawing treatment, which can be timed when empirical data substantiate intuitive prognoses. This allows additional time for families to anticipate and prepare for end‐of‐life decision‐making. (shrink)

I whole-heartedly endorse Ismaili M'hmandi’s efforts to move away from the narrowest of liberal justificatory grounds for public health policy. I worry, however, that the liberal perfectioni...

Conspiracy theories abound in social and political discourse, believed by millions of people around the world. In this article, we highlight when it is important to engage with people who believe in conspiracy theories and review recent literature highlighting how best to do so. We first summarise research on the potentially damaging consequences of conspiracy beliefs for individuals, including consequences related to psychopathology. We also focus on the consequences for groups, and societies, and the importance of understanding and addressing conspiracy (...) beliefs. We then review recent literature on how to engage with people who believe in conspiracy theories, specifically with the goal to reduce susceptibility to conspiracy theories and other types of misinformation. We focus on interpersonal strategies to communicate with individuals who believe in conspiracy theories, and large-scale strategies designed to reduce conspiracy beliefs within broader communities. (shrink)

It is widely acknowledged that the gradual emergence of the modern nation-state is associated with intensified interest in the government of childhood. Grounded in the Foucauldian literature on governmentality and drawing on a broad range of disciplines, this book examines the government of childhood in the West from the early modern period to the present. The book deals with three key time periods, examining shifts in the conceptualization and regulation of childhood and child-rearing between the late sixteenth and late eighteenth (...) century; between the late eighteenth century and the mid/late twentieth century and the period from the late twentieth century to the present day. Building on the work of Chris Jenks, The Government of Childhood deploys the images of the Dionysian and Apollonian images of childhood as symbolic targets of power/knowledge and presents a third model - the Athenian child - as a symbolic target of modes of exercising power over the young that is grounded in children's capacity for agency. (shrink)

Recent evidence, from both epidemiological and animal experimental studies, suggest that the very first environment, the intrauterine, is extremely important in determining the future health of the individual. Genetic and ‘lifestyle’ factors impinge on, and can exacerbate, a ‘programming’ effect of an adverse fetal environment. In this review, we present compelling evidence to suggest that one of the major organs affected by an unfavourable prenatal environment is the kidney. Many of the factors that can affect fetal renal development (i.e. exposure (...) to excess glucocorticoids, insufficient vitamin A, protein/calorie malnutrition (in rats) and alterations in the intrarenal renin angiotensinogen system), also produce hypertension in the adult animal. When nephron number is compromised during kidney development, maladaptive functional changes occur and can lead, eventually, to hypertension and/or renal disease. Surprisingly, it is during the very earliest stages of kidney development that the vulnerability to these effects occurs. BioEssays 25:212–220, 2003. © 2003 Wiley Periodicals, Inc. (shrink)

What if human joy went on endlessly? Suppose, for example, that each human generation were followed by another, or that the Western religions are right when they teach that each human being lives eternally after death. If any such possibility is true in the actual world, then an agent might sometimes be so situated that more than one course of action would produce an infinite amount of utility. Deciding whether to have a child born this year rather than next is (...) a situation wherein an agent may face several alternatives whose effects could well ramify endlessly on such suppositions, for the child born this year would be a different person—one who preferred different things, performed different actions, and had different descendants—from a child born next year. It has recently been suggested that traditional utilitarianism stumbles on such cases of infinite utility. Specifically, utilitarianism seems to require, for its application, that all experience of pleasure and pain cease at some time in the future or asymptotically approach zero.2 If neither of these conditions holds, then the utility produced by each of two alternative actions may turn out to be infinite, and utilitarianism thus loses its ability to discriminate morally between them. (shrink)

In their target article, Conley et al. (2023) appropriately highlight the ongoing conceptual and practical opacity of public engagement (PE) in the translation of human gene editing (HGE) (Conley e...