Background Families whose child has unexplained intellectual or developmental differences often hope that a genetic diagnosis will lower barriers to community-based therapeutic and support services. However, there is little known about efforts to mobilize genetic information outside the clinic or how socioeconomic disadvantage shapes and constrains outcomes.Methods We conducted an ethnographic study with predominantly socioeconomically disadvantaged families enrolled in a multi-year genomics research study, including clinic observations and in-depth interviews in English and Spanish at multiple time points. Coding and thematic (...) development were used to collaboratively interpret fieldnotes and transcripts.Results Thirty-two families participated. Themes included familial expectations that a genetic diagnosis could be translated into information, understanding, and assistance to improve the quality of a child’s day-to-day life. After sequencing, however, genetic information was not readily converted into improved access to services beyond the clinic, with families often struggling to use a genetic diagnosis to advocate for their child.Conclusion Families’ ability to use a genetic diagnosis as an effective advocacy tool beyond the clinic was limited by the knowledge and resources available to them, and by the eligibility criteria used by therapeutic service providers’ – which focused on clinical diagnosis and functional criteria more than etiologic information. All families undertaking genomic testing, particularly those who are disadvantaged, need additional support to understand the limits and potential benefits of genetic information beyond the clinic. (shrink)

This text demonstrates that symbolic representation and related problem-solving methods offer significant opportunities to clarify and articulate concepts of design.

Background Empirical studies of surrogate decision-making tend to assume that surrogates should make only a 'substituted judgement'—that is, judge what the patient would want if they were mentally competent. Objectives To explore what people want in a surrogate decision-maker whom they themselves select and to test the assumption that people want their chosen surrogate to make only a substituted judgement. Methods 30 undergraduate students were recruited. They were presented with a hypothetical scenario about their expected loss of mental capacity in (...) the future and asked to answer some questions about their choice of surrogate. These data were analysed qualitatively using thematic content analysis. Results Most respondents talked about choosing someone who was caring and competent in certain ways, giving interesting evidence for their judgements. Surprisingly few highlighted how well they thought their chosen surrogate knew their preferences and would be able to make a substituted judgement. Moreover, few specified that their chosen surrogate had similar attitudes and values to their own and so would make a similar decision to theirs in the circumstances presented. Some respondents also referred to the social role of their chosen surrogate or the social dynamics of their situation which influenced their choices, as well as to ideas of reciprocity and characteristics of honesty and loyalty. Conclusion In the event that they lose mental capacity, many people will not select a surrogate to decide about medical treatments on their behalf solely on the basis that they expect their surrogate to make a substituted judgement. (shrink)

The ethics of citation has attracted increased attention in recent discussions of research and publication ethics, fraud and plagiarism. Little attempt has been made, however, to situate specific citation misbehaviors in terms of broader ethical practices and principles. To investigate researchers’ perceptions of citation norms, we surveyed active US researchers receiving federal funding from the National Institutes of Health (NIH), the National Science Foundation (NSF), and the National Endowment for the Humanities (NEH). Participants (_n_ = 257) were asked about citation (...) norms they endorse (norm reports), the behaviors they perceive others to engage in (peer reports), and their own citation behaviors (self-reports). Our analyses showed that while considerable discrepancies exist between norm reports, peer reports and self-reports, respondents’ discipline has no significant effect on these. Participants indicated that their own practices and that of their peers falls short of the norms they endorse, but that their own behavior is much less ethically deficient than that of their peers. An exploratory factor analysis revealed that ethically questionable citation behaviors could be grouped usefully into three categories: strategic citations, neglectful citations, and blind citations. Contrary to our hypothesis, the survey showed that greater experience does not always result in better citation practices. A particularly divisive issue pertained to intentionally citing authors from underrepresented demographic groups for reasons of social justice, but broad support for this practice is lacking, although arts and humanities scholars are slightly more supportive. Most researchers view questionable citation practices as negatively affecting their disciplines. Our findings suggest the need for clearer articulations of the citation norms and improved guidance and training about citations. (shrink)

The non-financial effects (NFE) antitakeover amendment addresses the duties of company directors and management when faced with a possible takeover bid. The NFE amendment either permits or requires managers to consider the interests of the company's stakeholders during takeover bids. Other types of antitakeover devices have been viewed as protecting either stockholder or management interests. The NFE amendment would appear to protect a broad spectrum of interests including those of company employees, creditors, and the community in which the company operates. (...) Positive market returns to the adoption of NFE amendments provide some evidence that investors approve. The percent of both management and institutional ownership are positively related to the market reaction to the NFE amendment adoption. To the extent that institutional ownership proxies for the broad spectrum of stakeholder interest, NFE devices, unlike some other amendments that have been studied, appear to be in the interests of more than a single interest group. (shrink)

The non-financial effects (NFE) antitakeover amendment addresses the duties of company directors and management when faced with a possible takeover bid. The NFE amendment either permits or requires managers to consider the interests of the company's stakeholders during takeover bids. Other types of antitakeover devices have been viewed as protecting either stockholder or management interests. The NFE amendment would appear to protect a broad spectrum of interests including those of company employees, creditors, and the community in which the company operates. (...) Positive market returns to the adoption of NFE amendments provide some evidence that investors approve. The percent of both management and institutional ownership are positively related to the market reaction to the NFE amendment adoption. To the extent that institutional ownership proxies for the broad spectrum of stakeholder interest, NFE devices, unlike some other amendments that have been studied, appear to be in the interests of more than a single interest group. (shrink)

Proceedings of a conference held in the fall of 2005 at the University of Notre Dame.

We highlight the various domains of the flavivirus virulence factor NS1 and speculate on potential implications of the NS1 3D structure in understanding its role in flavivirus pathogenesis. Flavivirus non‐structural protein 1 (NS1) is a virulence factor with dual functions in genome replication and immune evasion. Crystal structures of NS1, combined with reconstructions from electron microscopy (EM), provide insight into the architecture of dimeric NS1 on cell membranes and the assembly of a secreted hexameric NS1‐lipid complex found in patient sera. (...) Three structural domains of NS1 likely have distinct roles in membrane association, replication complex assembly, and immune system avoidance. A conserved hydrophobic inner face is sequestered either on the membrane or in the interior of the secreted hexamer and contains regions implicated in viral replication. The exposed variable outer face is presented to cellular and secreted components of the immune system in infected patients and contains candidate regions for immune system modulation. We anticipate that knowledge of the distinct NS1 domains and assembly will lead to advances in elucidating virus‐host interactions mediated through NS1 and in dissecting the role of NS1 in viral genome replication. (shrink)

It is commonly held that early career experiences influence ethical behavior. One way early career experiences might operate is to influence the decisions people make when presented with problems that raise ethical concerns. To test this proposition, 102 first-year doctoral students were asked to complete a series of measures examining ethical decision making along with a series of measures examining environmental experiences and climate perceptions. Factoring of the environmental measure yielded five dimensions: professional leadership, poor coping, lack of rewards, limited (...) competitive pressure, and poor career direction. Factoring of the climate inventory yielded four dimensions: equity, interpersonal conflict, occupational engagement, and work commitment. When these dimensions were used to predict performance on the ethical decision-making task, it was found that the environmental dimensions were better predictors than the climate dimensions. The implications of these findings for research on ethical conduct are discussed. (shrink)

Retractions have traditionally been reserved for correcting the scientific record and discouraging research misconduct. Nonetheless, the potential for actual societal harm resulting from accurately reported published scientific findings, so-called information hazards, has been the subject of several recent article retractions. As these instances increase, the extent of support for such decisions among the scientific community and lay public remains unclear. Undergraduates (Study 1) and federally funded researchers (Study 2) reported their support for retraction decisions described as due to misconduct, honest (...) errors, or potential information hazards. Participants supported retraction on the former two grounds more than the latter. Despite limited support, women remained more receptive to retractions based on information hazards. Activist tendencies additionally predicted undergraduate men’s receptivity. Receptivity toward retraction due to information hazards was unrelated to scientists’ engagement in activism, suggesting that formal scientific training affords researchers an ability to separate personal and professional values in scientific discourse. Findings could inform the development of educational materials that may aid less experienced scientists and the lay public in understanding retraction ethics. (shrink)

Glowacki offers many new directions for understanding and even eliminating the problem of war, especially creating positive interdependencies with out-group members. We develop Glowacki's intriguing proposition that in-group dynamics provide a route to peace by describing a prosocial motivational system, the caregiving system, that aligns individual interests and eliminates the need to use coercion to achieve mutually beneficial outcomes.

Emerging adult newlywed couples often experience many demands on their time, and three common problems may surface as couples try to balance these demands—problems related to finances, sleep, and sex. We used two waves of dyadic data from 1,001 emerging adult newlywed couples to identify four dyadic latent profiles from husbands’ and wives’ financial management behaviors, sexual satisfaction, and sleep quality: Flounderers, Financially Challenged Lovers, Drowsy Budgeters, and Flourishers. We then examined how husbands’ and wives’ marital satisfaction, in relation to (...) profile membership, varied at a later wave. We found that Financially Challenged Lovers and Flourishers had significantly higher marital satisfaction than Drowsy Budgeters and Flounderers. Whereas, Financially Challenged Lovers and Flourishers did not differ in terms of marital satisfaction, Drowsy Budgeters seemed to have slightly higher marital satisfaction than Flounderers for wives only. However, we did not find evidence that these connections meaningfully differed by sex. Implications for the efforts of clinicians and educators are discussed. (shrink)

Depue & Morrone-Strupinsky (D&M-S) do not address how a reward system accommodates the motivational dilemmas associated with (a) the decision to approach versus avoid conspecifics, and (b) self versus other tradeoffs inherent in behaving altruistically toward bonded relationship partners. We provide an alternative evolutionary view that addresses motivational conflict, and discuss implications for the neurobiological study of affiliative bonds.

Internet recruitment methods for research are rapidly evolving as technology and participant preferences do as well. This brings data security concerns, balanced with respect to persons for research participants. Internet recruitment research strategies are still important given the importance of creating private and accessible pathways for potentially marginalized populations or people experiencing stigmatized mental health conditions to participate in research. This manuscript describes the case of social media recruitment for a mental health and racism study in Fall 2022 that was (...) infiltrated by bots. We contextualize it in the context of data quality literature, with considerations for future directions including strategies for study design and management, and further research questions. (shrink)

The title of this Festschrift to Stephen Brown points to the understanding of medieval philosophy and theology in the longue durée of their traditions and discourses.

We used a participatory approach and a rural livelihoods framework to explore the knowledge and capacity of southeast Queensland graziers to adapt to climate change. After being presented with information on climate change projections, participants identified biophysical and socio-economic opportunities and challenges to adaptation. Graziers identified key opportunities as components of resilience (incremental change), and in many cases were options that they had some knowledge of either from their own region or elsewhere in the grazing industry. The major constraint to (...) adaptation was the lack of financial capital: with low profitability of the industry and high land costs restricting their capacity to diversify and exploit economies of scale. These constraints were exacerbated by the pressure many graziers experienced from the demand for land as a result of urban expansion. While the focus of the workshop was on the impact of climate change and capacity to adapt, many of the issues raised by graziers were pressures not solely related to climate change. Adaptation needs to be considered in light of the appropriate level (resilience–transition–transformation) and spatial scale (field to region) required to tackle the issues identified. Policy needs to support good natural resource management, rural amenity, and food and fibre production close to urban population and markets in the face of urban encroachment. (shrink)

It describes and explains the patient-centered model examining and evaluating qualitative and quantitative research. It comprehensively covers the evolution and the six interactive components of the patient-centered clinical method, taking the reader through the relationships between the patient and doctor and the patient and clinician. All the editors are professors in the Department of Family Medicine at the University of Western Ontario, London, Canada.