Background Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger—and also more likely to conflict with those of institution-based researchers and other stakeholders—as (...) participants become more involved, quantitatively and qualitatively, in the research process. It is not yet known, however, how genomic citizen science initiatives are managing the interests of their participants in accessing and controlling research outputs in practice. To help fill this gap, we conducted an in-depth review of relevant policies and practices of U.S.-based genomic citizen science initiatives. Methods We queried the peer-reviewed literature and grey literature to identify 22 genomic citizen science initiatives that satisfied six inclusion criteria. A data collection form was used to capture initiative features, policies, and practices relevant to participants’ access to and control over research outputs. Results This analysis revealed that the genomic citizen science landscape is diverse and includes many initiatives that do not have institutional affiliations. Two trends that are in apparent tension were identified: commercialization and operationalization of a philosophy of openness. While most initiatives supported participants’ access to research outputs, including datasets and published findings, none supported participants’ control over results via intellectual property, licensing, or commercialization rights. However, several initiatives disclaimed their own rights to profit from outputs. Conclusions There are opportunities for citizen science initiatives to incorporate more features that support participants’ access to and control over research outputs, consistent with their specific objectives, operations, and technical capabilities. (shrink)

Medication reconciliation for pediatric oncology patientparticipants enrolled in clinical trials often reveals the use of chemical complementary medicine alongside protocol therapeutic agents. Considering the blurry delineation between clinical ethics and research ethics, this paper demonstrates how complementary medicine-related protocol violations introduce ethical questions of who should be included and excluded from clinical trials and offers recommendations on how to manage physician-patient-family interactions around these challenging issues.

A long-standing debate in social theory concerns the relative merits of structural approaches versus those that highlight the social actor. This article examines how various feminist approaches to gender inequality have incorporated assumptions about structure and agency, and suggests that existing perspectives could be improved by linking gender as a structural property of social organization and as a property of actors. Suggestions for an alternative conception of gender that acknowledges both dimensions of social life are discussed.

Cluster headache, writes sociologist Joanna Kempner, is “the most painful phenomenon a human can experience.” Also known as “suicide headache,” this condition is reportedly more painful than gunsho...

Editors’ Note: A major goal of Science and Engineering Ethics is to promote discussion of the ethical issues raised by various aspects of science and engineering, both within the pages of this journal and beyond. We are beginning a series of case presentations and discussions in the Educational Forum. We invite readers to respond to the case and accompanying commentaries, and to submit other cases and commentaries for future publication. We look forward to hearing from you. — S. J. Bird, (...) R. E. Spier. (shrink)

Male and female participants were instructed to produce an altered response pattern on an Implicit Association Test measure of gender identity by slowing performance in trials requiring the same response to stimuli designating own gender and self. Participants’ faking success was found to be predictable by a measure of slowing relative to unfaked performances. This combined task slowing (CTS) indicator was then applied in reanalyses of three experiments from other laboratories, two involving instructed faking and one involving possibly motivated faking. (...) Across all studies involving instructed faking, CTS correctly classified 75% of intentionally faking participants. Using the CTS index to adjust faked Implicit Association Test scores increased the correlation of CTS-adjusted measures with known group membership, relative to unadjusted (i.e., faked) measures. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Parenting Adults with ASD: Lessons for Researchers and CliniciansCassandra R. Newsom, Amy S. Weitlauf, Cora M. Taylor, and Zachary E. WarrenRecent reviews of treatments for individuals with autism spectrum disorders (ASD) reveal how little we still know about how to help adolescents with ASD and their families successfully transition into adulthood (Shattuck et al., 2012b; Taylor et al., 2012a). Shattuck and colleagues found that services in the United States (...) for adults with ASD were marked by high unemployment rates, a reliance on families to provide care across the lifespan, high turnover rates in front-line service providers, insufficient transition planning for high school students, and generally insufficient services to meet current needs. In a recent Agency for Healthcare Research and Quality (AHRQ) Comparative Effectiveness Review, the authors similarly found that there is very little evidence available to pinpoint specific intervention approaches for adolescents and young adults with ASD due to a lack of good quality studies. This was especially true for evidence-based approaches to support the transition of youth with ASD to adulthood (Taylor et al., 2012a).For the last decade, with dramatic increases in both ASD awareness and estimates of ASD prevalence, our field has understandably focused intensely on improving early detection and treatment of ASD. Our diagnostic tools and understanding of ASD presentation in very young children has improved tremendously. Different from many of the young adults in these stories, who were often diagnosed in their early teens, we now aim to identify children well before their third birthdays. Research has consistently shown that early and intense ASD-specific intervention can dramatically enhance outcomes for children with ASD. As such, there has been heavy investment in attempting to take full advantage of this early window of neuro-plasticity. However, as these stories illustrate, these children grow up. Their needs change, and our systems are often poorly equipped to help them live fulfilling lives, capitalize on their talents, and obtain independence and equal access, while still providing a safe, supportive environment. Without readily accessible and understandable coordinated systems of care, parents are forced to adopt the multiple roles of case manager, teacher, therapist, community educator, advocate, job coach, housing specialist, financial planner, and often, lifelong caregiver. These stories eloquently illustrate those struggles and successes.Grief and Joy: Opposite Sides of the Same Parenting CoinThe idea of grieving a diagnosis is controversial. Many of the writers seemed to feel conflicted about their grief responses and the validity of their feelings. Research shows that many families view the diagnostic process as extremely stressful (Siklos & [End Page 199] Kerns, 2005; Heiman, 2002). Feelings of sadness, anxiety, and depression are common at the point of diagnosis and may reemerge as milestones pass unmet. Families must modify the futures they imagined for their children and begin to envision new goals and dreams. Anonymous Three described this process when she wrote:Most children grow up, go to school, get jobs, move out of their parents’ home, etc. My husband and I have had to seriously consider how much of these are even possible for a young man with autism, even one who has a good number of functional life skills.Tasks of adolescence and adulthood such as starting high school, driving a car, and moving out of the house may be delayed and hard won if met. Raising a child with ASD appears to have particular challenges. Throughout this process, families begin to redefine what “success” means. Rather than ascribing to societal standards, they find joy in personal milestones. McDonald described the triumph of teaching his nephew to shake women’s hands instead of touching their hair, an important safety goal that took three months to accomplish. Each family thereby creates its own path.People outside of the family often do not understand the complicated interplay of love and obligation as well as the frustration and fulfillment that families experience. Just like any family, the parents of children with ASD describe many joys in addition to their struggles. They see their children’s strengths in a world that too often focuses on their weaknesses. Gifted with the everyday experience of their child’s development, they see past the necessity of a... (shrink)

Aristophanes’ Frogs was first performed at the Lenaea festival of 405 in competition with Plato's Cleophon and Phrynichus’ Muses. This paper argues that Frogs contains a series of agonistic jokes against Phrynichus, most of which have gone unnoticed because he shares his name with a tragic poet and a politician; Aristophanes plays with the ambiguity of the name Phrynichus to mock his Lenaean rival by comparing him unfavourably with his namesakes. Aristophanes ultimately claims that his comedy is superior to that (...) of Phrynichus because he is more successful than his rival in appropriating and redeploying other comedians’ material. (shrink)

The epistemic barriers to interdisciplinarity are understudied. To fill this gap, we ask whether a university initiative designed to reduce structural barriers to interdisciplinarity also facilitates the dissolution of epistemic ones. Through analytical autoethnography of graduate training in two disciplines, sociology and ecology, we develop the concept of asymmetric epistemology to better understand the unique epistemological position that emerges for interdisciplinarians. Building from feminist science and technology studies (STS) and scholarship on epistemic identities, our work illuminates how epistemologies are embodied (...) by individuals, leading to tensions around identity, materiality, and spatiality during the practice of interdisciplinarity. While some epistemic barriers recede and others remain, we reveal that the navigation of these boundaries deeply impacts individuals’ epistemic identities. (shrink)

It has been well documented how language-specific cues may be used for word segmentation. Here, we investigate what role a language-independent phonological universal, the sonority sequencing principle (SSP), may also play. Participants were presented with an unsegmented speech stream with non-English word onsets that juxtaposed adherence to the SSP with transitional probabilities. Participants favored using the SSP in assessing word-hood, suggesting that the SSP represents a potentially powerful cue for word segmentation. To ensure the SSP influenced the segmentation process (i.e., (...) during learning), we presented two additional groups of participants with either (a) no exposure to the stimuli prior to testing or (b) the same stimuli with pauses marking word breaks. The SSP did not influence test performance in either case, suggesting that the SSP is important for word segmentation during the learning process itself. Moreover, the fact that SSP-independent segmentation of the stimulus occurred (in the latter control condition) suggests that universals are best understood as biases rather than immutable constraints on learning. (shrink)

This study explores the impact of environmental turbulence on relationships between personal and organizational characteristics, personal values, ethical perceptions, and behavioral intentions. A causal model is tested using data obtained from a national sample of marketing research professionals in South Africa. The findings suggest turbulent conditions lead professionals to report stronger values and ethical norms, but less ethical behavioral intentions. Implications are drawn for organizations confronting growing turbulence in their external environments. A number of suggestions are made for ongoing research.

In its roughly 25 years of existence, the trial consulting profession has grown dramatically in membership, recognition, and breadth of practice. What began as a small activist group of social scientists volunteering their expertise to assist in the defense of Vietnam War protestors has evolved into a diverse set of professionals from a range of educational and professional backgrounds. In spite of such enormous growth, the work of trial consultants has gone largely unexamined. Trial Consulting takes an in-depth look at (...) the primary activities of trial consultants, including witness preparation, focus groups and mock trials, jury selection, change of venue surveys, and attorney presentation style. It also examines the profession's struggle to define itself, resisting certification and licensure requirements and settling instead for a set of practice standards. The authors draw upon empirical and other scholarly work in the social sciences, recommended "best practices" from trial lawyers, and the written and spoken recommendations and reflections of the trial consultants themselves. Addressing a broad spectrum of topics ranging from handwriting analysis to medical malpractice cases, they also suggest reforms for improving the profession and the efficacy of the trial consultant in the courtroom. The result is a critical analysis of what trial consulting truly adds to, and detracts from, the administration of justice. This book is an indispensable guide for practicing and aspiring trial consultants as well as the judges, attorneys, and psychologists who work with them. Trial Consulting provides a thought-provoking statement on the state of the profession, and students and professionals alike will benefit from the challenges it offers. (shrink)

Previous studies suggest that social class, class background, and social mobility have important consequences for family life. Exploring hypotheses derived from these studies, as well as the literature on intergenerational relations, the authors focus on one key aspect of family relations: adult daughters' ties to their mothers. Analyzing data from the National Survey of Families and Households, the authors explore how employed women's relations with their mothers are shaped by race, social class memberships and backgrounds, and family arrangements. Their results (...) suggest that social class and mobility exert powerful effects on women's sense of their relations with their mothers, especially among Whites. In addition, however, it is shown that mother-daughter ties among African American and White women are also influenced by family arrangements that operate somewhat independently of social class and mobility. (shrink)

Growing literature has linked attention bias variability to the experience and treatment of posttraumatic stress disorder. Unlike assessments of attention bias in only one direction, A...

Blair proposes that fluid intelligence, working memory, and executive function form a unitary construct: fluid cognition. Recently, our group has utilized a combined correlational–experimental cognitive neuroscience approach, which we argue is beneficial for investigating relationships among these individual differences in terms of neural mechanisms underlying them. Our data do not completely support Blair's strong position. (Published Online April 5 2006).

Lower plasma levels of high-density lipoproteins in adolescents with type 2 diabetes have been associated with a higher pulse wave velocity, a marker of arterial stiffness. Evidence suggests that HDL proteins or particle subspecies are altered in T2D and these may drive these relationships. In this work, we set out to reveal any specific proteins and subspecies that are related to arterial stiffness in youth with T2D from proteomics data. Plasma and PWV measurements were previously acquired from lean and T2D (...) adolescents. Each plasma sample was separated into 18 fractions and evaluated by mass spectrometry. Then, we applied a validated network-based computational approach to reveal HDL subspecies associated with PWV. Among 68 detected phospholipid-associated proteins, we found that seven were negatively correlated with PWV, indicating that they may be atheroprotective. Conversely, nine proteins show positive correlation with PWV, suggesting that they may be related to arterial stiffness. Intriguingly, our results demonstrate that apoA-I and histidine-rich glycoprotein may reverse their protective roles and become antagonistic in the setting of T2D. Furthermore, we revealed two arterial stiffness-associated HDL subspecies, each of which contains multiple PWV-related proteins. Correlation and disease association analyses suggest that these HDL subspecies might link T2D to its cardiovascular-related complications. (shrink)

Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that...

The comorbidity of chronic pain and opioid addiction is a serious problem that has been growing with the practice of prescribing opioids for chronic pain. Neuroimaging research has shown that chronic pain and opioid dependence both affect brain structure and function, but this is the first study to evaluate the neurophysiological alterations in patients with comorbid chronic pain and addiction. Eighteen participants with chronic low back pain and opioid addiction were compared with eighteen age- and sex-matched healthy individuals in a (...) pain-induction fMRI task. Unified structural equation modeling (SEM) with Lagrange multiplier (LM) testing yielded a network model of pain processing for patient and control groups based on 19 a priori defined regions. Tests of differences between groups on specific regression parameters were determined on a path-by-path basis using z-tests corrected for the number of comparisons. Patients with the chronic pain and addiction comorbidity had increased connection strengths; many of these connections were interhemispheric and spanned regions involved in sensory, affective, and cognitive processes. The affected regions included those that are commonly altered in chronic pain or addiction alone, indicating that this comorbidity manifests with neurological symptoms of both disorders. Understanding the neural mechanisms involved in the comorbidity is crucial to finding a comprehensive treatment, rather than treating the symptoms individually. (shrink)

Working parents in are struggling to balance the demands of their occupation with those of childcare and homeschooling during the COVID-19 pandemic. Moreover, studies show that women are shouldering more of the burden and reporting greater levels of psychological distress, anxiety, and depression relative to men. However, research has yet to show that increases in psychological symptoms are linked to changes in stress during the pandemic. Herein, we conduct a small-N study to explore the associations between stress and psychological symptoms (...) during the pandemic among mothers using structural equation modeling, namely latent change score models. Thirty-three mothers completed questionnaires reporting current anxious and depressive symptoms, as well as stressful life experiences prior to-versus during the pandemic. Women endorsed significantly more stressful events during the pandemic, relative to the pre-pandemic period. Additionally, 58% of mothers scored as moderate-to-high risk for developing a stress-related physical illness in the near future because of their pandemic-level stress. Depressive symptoms were associated with the degree of change in life stress, whereas anxiety symptoms were more related to pre-pandemic levels of stress. The present study preliminarily sheds light on the nuanced antecedents to mothers’ experiences of anxious and depressive symptoms during the COVID-19 pandemic. Although further work is needed in larger, more diverse samples of mothers, this study highlights the potential need for appropriate policies, and prevention and intervention programs to ameliorate the effects of pandemics on mothers’ mental health. (shrink)

Preparing the Next Generation of Oral Historians is an invaluable resource to educators seeking to bring history alive for students at all levels. Filled with insightful reflections on teaching oral history, it offers practical suggestions for educators seeking to create curricula, engage students, gather community support, and meet educational standards. By the close of the book, readers will be able to successfully incorporate oral history projects in their own classrooms.

Clinical ethics consultations exist to support patients, families and clinicians who are facing ethical or moral challenges related to patient care. They provide a forum for open communication, where all stakeholders are encouraged to express their concerns and articulate their viewpoints. Ethics consultations can be requested by patients, caregivers or members of a patient’s clinical or supportive team. Althoughpatientsand by extension their families (especially in cases of decisional incapacity) are the common denominators in most ethics consultations, these constituents are theleastlikely (...) to request them. At many healthcare organisations in the USA, ethics consultations are overwhelmingly requested by physicians and other clinicians. We believe it is vital that healthcare institutions bridge the knowledge gaps and power imbalances over access to ethics consultation services through augmented policies, procedures and infrastructure. With enhanced education and support, patients and families may use ethics consultation to elevate their voices and prioritise their unique characteristics and preferences in the delivery of their healthcare. Empowering patients and families to request ethics consultation can only strengthen the patient/family–clinician relationship, enhance the shared decision-making model of care and ultimately lead to improved patient-centred care. (shrink)

We draw attention to a series of implicit assumptions that have structured the debate about Frege’s Puzzle. Once these assumptions are made explicit, we rely on them to show that if one focuses exclusively on the issues raised by Frege cases, then one obtains a powerful consideration against a fine-grained conception of propositional-attitude content. In light of this consideration, a form of Russellianism about content becomes viable.

The Developmental Systems approach to evolution is defended against the alternative extended replicator approach of Sterelny, Smith and Dickison (1996). A precise definition is provided of the spatial and temporal boundaries of the life-cycle that DST claims is the unit of evolution. Pacé Sterelny et al., the extended replicator theory is not a bulwark against excessive holism. Everything which DST claims is replicated in evolution can be shown to be an extended replicator on Sterelny et al.s definition. Reasons are given (...) for scepticism about the heuristic value claimed for the extended replicator concept. For every competitive, individualistic insight the replicator theorist has a cooperative, systematic blindspot. (shrink)

Developmental systems theory (DST) is a general theoretical perspective on development, heredity and evolution. It is intended to facilitate the study of interactions between the many factors that influence development without reviving `dichotomous' debates over nature or nurture, gene or environment, biology or culture. Several recent papers have addressed the relationship between DST and the thriving new discipline of evolutionary developmental biology (EDB). The contributions to this literature by evolutionary developmental biologists contain three important misunderstandings of DST.

“It's almost like putting salt in a wound, for this person who's already made a very difficult decision,” suggested Meghan Patterson, a licensed obstetrician-gynecologist whom we interviewed in our qualitative study of the experiences of North Carolina abortion providers practicing under the state's Woman's Right to Know Act. The act requires that women receive counseling with state-mandated information at least twenty-four hours prior to obtaining an abortion. After the law was passed, Patterson worked with clinic administrators, in consultation with a (...) lawyer, to write a script to be used in the state-mandated counseling procedure. She and her colleagues took particular steps to mitigate the effects of what she described as HB 854's “forced language”—such as referring to the “father of the child.” While HB 854 stipulated that patients must be informed of the medical risks associated with the particular abortion procedure as well as those of carrying the child to term, Patterson's script made explicit the magnitude of comparative risks, emphasizing that the risks of carrying a pregnancy to term are substantially greater than the risks of an early-term abortion. She felt that these contextualization strategies helped to facilitate trust and rapport in a clinical care situation that proved relationally and morally challenging. In this article, we take up and expand on this point by elucidating an empirically grounded approach to ethically justified care when health care providers face legal or institutional policy mandates that raise possible moral conflicts. Our approach builds on recent bioethics discourse addressing conscience in the practice of medicine. While the concept of conscience has broad philosophical underpinnings relating to moral judgment, agency, and discernments of right and wrong, debates in bioethics have tended to engage the concept primarily vis-à-vis rights of conscientious objection or refusal. Here, we suggest a broader frame for thinking about claims of conscience in health care. Our approach draws on the feminist bioethics and the ethics of care literatures to highlight how providers may be motivated by matters of conscience, including relational concerns, in the active provision of certain forms of care. What emerges are two possibilities: not only conscientious refusal to comply with a policy mandate but also conscientious compliance—working conscientiously within a mandate's confines. (shrink)

This paper offers a critique of sustainability reporting and, in particular, a critique of the modern disconnect between the practice of sustainability reporting and what we consider to be the urgent issue of our era: sustaining the life-supporting ecological systems on which humanity and other species depend. Tracing the history of such reporting developments, we identify and isolate the concept of the ‘triple bottom line’ (TBL) as a core and dominant idea that continues to pervade business reporting, and business engagement (...) with sustainability. Incorporating an entity’s economic, environmental and social performance indicators into its management and reporting processes, we argue, has become synonymous with corporate sustainability; in the process, concern for ecology has become sidelined. Moreover, this process has become reinforced and institutionalised through SustainAbility’s biennial benchmarking reports, KPMG’s triennial surveys of practice, initiatives by the accountancy profession and, particularly, the Global Reporting Initiative (GRI)’s sustainability reporting guidelines. We argue that the TBL and the GRI are insufficient conditions for organizations contributing to the sustaining of the Earth’s ecology. Paradoxically, they may reinforce business-as-usual and greater levels of un-sustainability. (shrink)