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)

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)

A common quest among theoretical psychologists is the transformation of psychology to accommodate human agency and meaning. Several strong experimental methods are used in cognitive neuroscience but are based almost entirely upon a mechanistic ontology. A step toward rapprochement is proposed using precise and powerful experimental methods that are holistic, individualized, and compatible with an agentive ontology. Such methods must be applicable to all aspects of human experience, the subjective and agentive aspects, as well as the behavioural and the neurophysiological (...) Multivariate methods are capable of expressing and capturing the holistic isomorphism among multiple aspects of human existence and might even help provide insight into the mind-body problem. Results from a cognitive neuroscience study are used to illustrate this approach. 2012 APA, all rights reserved). (shrink)

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)

We examine the impact of employing a female, versus a male, leader on future (t + 1) donations and operating margin using a sample of 4387 unique nonprofit organizations (NPOs) between 2011 and 2014. Using two-stage and matched sample designs, we find that NPOs headed by female leaders report higher future operating margins but lower future donations. We interpret these findings to mean that female leaders are more focused on fiscal responsibility than fundraising. We also find that female leaders with (...) past fundraising experience attenuate lower future donations, and at commercial nonprofits, female leaders with prior for-profit experience contribute to even higher operating margins. Moreover, while female leaders identified as the founder of the organization increase future donations, they have no effect on future operating margins. Collectively, the results of our study should increase nonprofit boards’ confidence in hiring female leaders thereby narrowing the gender disparity in leadership in the nonprofit sector. This study expands the extant literature by providing initial evidence on the effects of female leaders in NPOs thereby contributing to research exploring gender, diversity, management, and nonprofit executives. (shrink)

We are less optimistic than Madole & Harden that family-based genome-wide association studies (GWASs) will lead to significant second-generation causal knowledge. Despite bearing some similarities, family-based GWASs and randomised controlled trials (RCTs) are not identical. Most RCTs assess a relatively homogenous causal stimulus as a treatment, whereas GWASs assess highly heterogeneous causal stimuli. Thus, GWAS results will not translate so easily into second-generation causal knowledge.

Hastings Center Report, Volume 52, Issue S1, Page S83-S88, March‐April 2022.

The negative emotions generated following stressful life events can increase one’s risk of depressive symptoms and promote higher levels of perceived stress. The process model of emotion regulation can help distinguish between adaptive and maladaptive emotion regulation strategies to determine who may be at the greatest risk of worse psychological health across the lifespan. Heart rate variability may affect these relationships as it indexes aspects of self-regulation, including emotion and behavioral regulation, that enable an individual to dynamically adapt to the (...) changing demands of both internal and external environments. In this study, we expected individual differences in resting vagally mediated HRV to moderate the influence of emotion regulatory strategies among our sample of 267 adults. We found support for the hypothesis that higher vagally mediated HRV buffers against the typical adverse effects of expressive suppression when evaluating depressive symptoms and found weak support when considering perceived stress. There was no evidence for an interaction between cognitive reappraisal and vagally mediated HRV but there was a significant, negative association between cognitive reappraisal and depressive symptoms and perceived stress. Future work may determine if intervening on either emotion regulation strategies or HRV may change these within-persons over time. (shrink)

The shortage of organs for transplantation by its nature prompts ethical dilemmas. For example, although there is an imperative to save human life and reduce suffering by maximising the supply of vital organs, there is an equally important obligation to ensure that the process by which we increase the supply respects the rights of all stakeholders. In a relatively unexamined practice in the USA, organs are procured from unrepresented decedents without their express consent. Unrepresented decedents have no known healthcare wishes (...) or advance care planning document; they also lack a surrogate. The Revised Uniform Anatomical Gift Act (RUAGA) of 2006 sends a mixed message about the procurement of organs from this patient population and there are hospitals that authorise donation. In addition, in adopting the RUAGA, some states included provisions that clearly allow organ procurement from unrepresented decedents. An important unanswered question is whether this practice meets the canons of ethical permissibility. The current Brief Report presents two principled approaches to the topic as a way of highlighting some of the complexities involved. Concluding remarks offer suggestions for future research and discussion. (shrink)

1 Evidence-based policy requires researchers to provide the answers to ecological questions that are of interest to policy makers. To find out what those questions are in the UK, representatives from 28 organizations involved in policy, together with scientists from 10 academic institutions, were asked to generate a list of questions from their organizations. 2 During a 2-day workshop the initial list of 1003 questions generated from consulting at least 654 policy makers and academics was used as a basis for (...) generating a short list of 100 questions of significant policy relevance. Short-listing was decided on the basis of the preferences of the representatives from the policy-led organizations. 3 The areas covered included most major issues of environmental concern in the UK, including agriculture, marine fisheries, climate change, ecosystem function and land management. 4 The most striking outcome was the preference for general questions rather than narrow ones. The reason is that policy is driven by broad issues rather than specific ones. In contrast, scientists are frequently best equipped to answer specific questions. This means that it may be necessary to extract the underpinning specific question before researchers can proceed. 5 Synthesis and applications. Greater communication between policy makers and scientists is required in order to ensure that applied ecologists are dealing with issues in a way that can feed into policy. It is particularly important that applied ecologists emphasize the generic value of their work wherever possible. (shrink)

Production and comprehension have long been viewed as inseparable components of language. The study of vision, by contrast, has centered almost exclusively on comprehension. Here we investigate drawing—the most basic form of visual production. How do we convey concepts in visual form, and how does refining this skill, in turn, affect recognition? We developed an online platform for collecting large amounts of drawing and recognition data, and applied a deep convolutional neural network model of visual cortex trained only on natural (...) images to explore the hypothesis that drawing recruits the same abstract feature representations that support natural visual object recognition. Consistent with this hypothesis, higher layers of this model captured the abstract features of both drawings and natural images most important for recognition, and people learning to produce more recognizable drawings of objects exhibited enhanced recognition of those objects. These findings could explain why drawing is so effective for communicating visual concepts, they suggest novel approaches for evaluating and refining conceptual knowledge, and they highlight the potential of deep networks for understanding human learning. (shrink)

Many studies have shown that environmentalist attitudes are increasingly prominent both domestically and internationally, although they often vary in depth and commitment. However, consumption studies and the rate of depletion and pollution of natural resources have shown even more clearly that detrimental human activity, per capita, is still rising. These observations contradict each other, resulting in a disparity between values/attitudes and consumptive behavior. We argue that this condition cannot be rationalized away with simplistic explanations followed by a call for better (...) education, shifts in morality, changes in consciousness, or new laws, policies and other forms of social control. Thus, the purpose of our study was to find out why the disparity between positive (green) values and negative (consumptive-exploitative) behavior exists in the majority of our sampled population. 1047 participants completed a 2-part survey that included both demographic variables and value/attitude test items. Our analysis isolated 4 main Factors; 3 were relevant to the goals of the study. These three Factors captured aspects of (1) political correctness, (2) a deep-ecology mindset, and (3) a politically conservative-religious value system best characterized as antithesis of factor 2. (shrink)

The struggle over legal abortion access in the United States is a religious controversy, not a scientific debate. Religious activists who believe that meaningful individual life (i.e., “personhood”) begins at a specific “moment-of-conception” are attempting to pass laws that force this view upon all pregnant persons, irrespective of their medical circumstances, individual preferences, or personal religious beliefs. This paper argues that such actions promote a constitutionally prohibited “establishment of religion.” Abortion policy in a secular state must be based upon scientifically (...) accurate biology, not unprovable theological presuppositions. The scientific facts regarding human pregnancy do not support the position that personhood begins with fertilization—at which point a pregnancy does not yet even exist. Abortion policy should regard the embryo/fetus as part of the pregnant individual’s body until delivery. We argue that individual “personhood” only begins when the _latent_ potentialities of the fetal nervous system are _actualized_ in the newborn after delivery. The paper argues that instantiating non-scientific beliefs concerning embryonic/fetal “personhood” into the law as the basis for abortion policy establishes a state-sponsored religion. The protection of religious liberty requires that abortion be decriminalized. Abortion should be treated like any other medical procedure and regulated similarly. To protect both religious freedom and sound medical practice, individual legal personhood should be recognized as beginning only at birth. (shrink)

A new temperament construct based on recent brain physiology literature has been investigated using the Fisher Temperament Inventory (FTI). Four collections of behaviors emerged, each associated with a specific neural system: the dopamine, serotonin, testosterone, and estrogen/oxytocin system. These four temperament suites have been designated: (1) Curious/Energetic, (2) Cautious/Social Norm Compliant, (3) Analytical/Tough-minded, and (4) Prosocial/Empathetic temperament dimensions. Two functional magnetic resonance imaging (fMRI) studies have suggested that the FTI can measure the influence of these neural systems. In this paper, (...) to further the behavioral validation and characterization of the four proposed temperament dimensions, we measured correlations with five variables: (1) gender; (2) level of education; (3) religious preference; (4) political orientation; (5) the degree to which an individual regards sex as essential to a successful relationship. Subjects were 39,913 anonymous members of a US Internet dating site and 70,000+ members in six other countries. Correlations with the five variables characterize the FTI and are consistent with mechanisms using the proposed neuromodulators. We also report on an analysis between the FTI and the NEO-Five Factor Inventory, using a college sample ( n = 215), which showed convergent validity. The results provide novel correlates not available in other questionnaires: religiosity, political orientation, and attitudes about sex in a relationship. Also, an Eigen analysis replicated the four clusters of co-varying items. The FTI, with its broad systems and non-pathologic factors complements existing personality questionnaires. It provides an index of some brain systems that contribute to temperament, and may be useful in psychotherapy, business, medicine, and the legal community. (shrink)

The present study examined nonprofessionals' perceptions of culturally based and noncultural ethical violations. One hundred seventy-four undergraduates students read 12 vignettes depicting situations in which a clinician committed either a culturally based violation (e.g., sexist or ageist behavior) or a noncultural violation (e.g., breeching confidentiality or multiple relationship). Results indicated that participants were more likely to have unfavorable views of clinicians who had committed culturally based violations. In addition, results suggested that participants would be more likely to report a clinician (...) who had committed a culturally based violation to a supervisor or ethics board. (shrink)

A pattern of research findings indicates that excessive devotion to a favorite celebrity is linked to attitudes and behaviors that are psychologically unhealthy and may predict low life satisfaction. This study examines whether four common measures of life satisfaction predict admiration for celebrities in two university samples and one community sample of young adults. Our results showed significant correlations between celebrity admiration and two measures of life satisfaction. We also found that the predictors of life satisfaction correlate with each other (...) in ways that are consistent with previous research in positive psychology. Our research suggests an inverse relationship between celebrity admiration and life satisfaction. In addition, the results contribute to establishing the validity of four contemporary life satisfaction measures. (shrink)

In this study, we comprehensively examine the relationships between ethical leadership, social exchange, and employee commitment. We find that organizational and supervisory ethical leadership are positively related to employee commitment to the organization and supervisor, respectively. We also find that different types of social exchange relationships mediate these relationships. Our results suggest that the application of a multifoci social exchange perspective to the context of ethical leadership is indeed useful: As hypothesized, within-foci effects (e.g., the relationship between organizational ethical leadership (...) and commitment to the organization) are stronger than cross-foci effects (e.g., the relationship between supervisory ethical leadership and commitment to the organization). In addition, in contrast to the “trickle down” model of ethical leadership (Mayer et al. in Org Behav Hum Decis Process 108:1–13, 2009), our results suggest that organizational ethical leadership is both directly and indirectly related to employee outcomes. (shrink)

Experiential evidence shows that pain is associated with common meanings. These include a meaning of threat or danger, which is experienced as immediately distressing or unpleasant; cognitive meanings, which are focused on the long-term consequences of having chronic pain; and existential meanings such as hopelessness, which are more about the person with chronic pain than the pain itself. This interdisciplinary book - the second in the three-volume Meanings of Pain series edited by Dr Simon van Rysewyk - aims to better (...) understand pain by describing experiences of pain and the meanings these experiences hold for the people living through them. The lived experiences of pain described here involve various types of chronic pain, including spinal pain, labour pain, rheumatic pain, diabetic peripheral neuropathic pain, fibromyalgia, complex regional pain syndrome, endometriosis-associated pain, and cancer-related pain. Two chapters provide narrative descriptions of pain, recounted and interpreted by people with pain. Language is important to understanding the meaning of pain since it is the primary tool human beings use to manipulate meaning. As discussed in the book, linguistic meaning may hold clues to understanding some pain-related experiences, including the stigmatisation of people with pain, the dynamics of patient-clinician communication, and other issues, such as relationships between pain, public policy and the law, and attempts to develop a taxonomy of pain that is meaningful for patients. Clinical implications are described in each chapter. This book is intended for people with pain, their family members or caregivers, clinicians, researchers, advocates, and policy makers. (shrink)

At the forefront of international concerns about global legislation and regulation, a host of noted environmentalists and business ethicists examine ethical issues in consumption from the points of view of environmental sustainability, economic development, and free enterprise.

This study has two aims. First, it lays out the synchronic patterning of four constructions that express static location in Secoya (Tukanoan). Each construction licenses different semantic verb types: topological verbs, postural verbs, an existential verb, and a copula. Second, this study explores the different construals encoded by these constructions and highlights the ways speakers use them creatively to elaborate on stage-level properties adjacent to location in locative utterances. Data collected from six speakers using visual stimuli reveal that each of (...) the constructions elaborates on specific aspects of locative scenes. Responses for typical/atypical scenes, negative polarity statements, and frequency patterns show that speakers can choose conceptualizations that favor Ground geometry, Figure posture, more complex Figure dispositions, or marked perspectivizations. Similar phenomena are observed in other Amazonian languages. These results raise difficulties in identifying a basic locative construction, suggesting that Secoya may not fit squarely into any type in existing typologies of spatial expression (e.g., Ameka and Levinson 2007). Additionally, the Secoya system raises questions about the relationship between conceptual alternativity and the notion of “basicness” with respect to construal types. (shrink)

We report the identification of a recurrent, 520-kb 16p12.1 microdeletion associated with childhood developmental delay. The microdeletion was detected in 20 of 11,873 cases compared with 2 of 8,540 controls and replicated in a second series of 22 of 9,254 cases compared with 6 of 6,299 controls. Most deletions were inherited, with carrier parents likely to manifest neuropsychiatric phenotypes compared to non-carrier parents. Probands were more likely to carry an additional large copy-number variant when compared to matched controls. The clinical (...) features of individuals with two mutations were distinct from and/or more severe than those of individuals carrying only the co-occurring mutation. Our data support a two-hit model in which the 16p12.1 microdeletion both predisposes to neuropsychiatric phenotypes as a single event and exacerbates neurodevelopmental phenotypes in association with other large deletions or duplications. Analysis of other microdeletions with variable expressivity indicates that this two-hit model might be more generally applicable to neuropsychiatric disease. © 2010 Nature America, Inc. All rights reserved. (shrink)