We review the relationships between language, inner speech, and cognitive control in children and young adults, focusing on the domain of cognitive flexibility. We address the role that inner speech plays in flexibly shifting between tasks, addressing whether it is used to represent task rules, provide a reminder of task order, or aid in task retrieval. We also consider whether the development of inner speech in childhood serves to drive the development of cognitive flexibility. We conclude that there is a (...) close association between inner speech and cognitive flexibility in both adults and children. Experimental work has begun to specify in detail the role that inner speech might play in adult performance, suggesting that language plays a facilitative but not essential role in representing and activating the relevant task set, processes that occur on both switch and nonswitch trials. While developmental studies suggest an increase in the spontaneous use of verbal strategies with age, implying an increase in top-down control during shifting, experimental work is needed to specify more precisely the nature and precise role that inner speech plays in the development of cognitive control through childhood. (shrink)

We examined whether variations in contextual diversity, spacing, and retrieval practice influenced how well adults learned new words from reading experience. Eye movements were recorded as adults read novel words embedded in sentences. In the learning phase, unfamiliar words were presented either in the same sentence repeated four times (same context) or in four different sentences (diverse context). Spacing was manipulated by presenting the sentences under distributed or non‐distributed practice. After learning, half of the participants were asked to retrieve the (...) new words, and half had an extra exposure to the new words. Although words experienced in diverse contexts were acquired more slowly during learning, they enjoyed a greater benefit of learning at immediate posttest. Distributed practice also slowed learning, but no benefit was observed at posttest. Although participants who had an extra exposure showed the greatest learning benefit overall, learning also benefited from retrieval opportunity, when words were experienced in diverse contexts. These findings demonstrate that variation in the content and structure of the learning environment impacts on word learning via reading. (shrink)

Emotion is closely associated with language, but we know very little about how children express emotion in their own writing. We used a large‐scale, cross‐sectional, and data‐driven approach to investigate emotional expression via writing in children of different ages, and whether it varies for boys and girls. We first used a lexicon‐based bag‐of‐words approach to identify emotional content in a large corpus of stories (N>100,000) written by 7‐ to 13‐year‐old children. Generalized Additive Models were then used to model changes in (...) sentiment across age and gender. Two other machine learning approaches (BERT and TextBlob) validated and extended these analyses, converging on the finding that positive sentiments in children's writing decrease with age. These findings echo reports from previous studies showing a decrease in mood and an increased use of negative emotion words with age. We also found that stories by girls contained more positive sentiments than stories by boys. Our study shows the utility of large‐scale data‐driven approaches to reveal the content and nature of children's writing. Future experimental work should build on these observations to understand the likely complex relationships between written language and emotion, and how these change over development. (shrink)

DISEASE X is the codename given by the World Health Organisation to a pathogen currently unknown to science that could cause havoc to humankind. Emerging infections are sending us multiple warnings that another Disease X is looming. We've had SARS in 2002, H5N1 bird flu in 2004, H1N1 'swine flu' in 2009, MERS in 2012, Ebola in 2014, Zika in 2015 and now COVID-19. These events are not freak events, but are happening continually, and at an increasing cadence. Written by (...) a long-standing ex-Reuters global health and science correspondent, DISEASE X will use privileged access to the body leading international efforts to control viruses, the Coalition for Epidemic Preparedness Innovations (CEPI), and its CEO, Dr Richard Hatchett. CEPI seed-funded three successful COVID vaccines, including Astra-Zeneca and Moderna. DISEASE X will explore the emergence of the novel coronavirus and the crisis it caused, analysing the responses of global health organisations and experts, including the WHO, national governments such as Britain, China and the USA, COVAX, the global vaccine allocation facility, pharmaceutical companies, and leading research scientists. Weaving in insights from the likes of Bill Gates, Sir Jeremy Farrar, Dr Anthony Fauci and Sir Patrick Vallance, the book will explain how the world's public health scientists are embarking on a 100 Days Mission to snuff out future threats before they become deadly pandemics. This is the inside story written for the public. (shrink)

According to one interpretation, Montesquieu believed that laws should be suited to the particular physical and moral characteristics of a nation, and that political change should not be abruptly imposed. However, as Montesquieu nonetheless condemned despotism, he argued that change in despotic regimes should happen gradually through the noncoercive alternative of doux commerce. My aim is to challenge this interpretation of Montesquieu in two ways. First of all, Montesquieu was far more skeptical about the possibility of political change; so (...) strong was his physical determinism that Montesquieu himself thought that despotic states could not be reformed, even through commerce. Second, even though successors of Montesquieu—such as the Abbé Raynal—did view the use of force in reforming despotic states as futile and preferred commerce as a benign alternative, they had to acknowledge that even commerce could not take root in those supposedly despotic states without coercion. The two most representative doux commerce theorists of the eighteenth century, when confronted with the prevailing trope of Oriental despotism, were far less optimistic about the civilizing effect of commerce than today’s interpretations suggest. My reading of The Spirit of the Laws and The History of the Two Indies suggests the limits of turning to eighteenth-century doux commerce ideals to theorize political reform in so-called despotic governments today. (shrink)

Purpose Genetic research, via the mainstream media, presents the public with novel, profound findings almost on a daily basis. However, it is not clear how much laypeople understand these presentations and how they integrate such new findings into their knowledge base. Genetic knowledge (GK), existing causal beliefs, and genetic essentialist tendencies (GET) have been implicated in such processes; the current study assesses the relationships between these elements and how brief presentations of media releases of scientific findings about genetics are consumed (...) and affect the readers. -/- Methods An Australian national survey of GK, GET, and existing causal beliefs about health phenomena (heart disease and obesity) was conducted. Participants were also exposed to news headlines that offered genetic and non-genetic partial explanations of the same health phenomena and reported their evaluations of these headlines, as well as the effects of the headlines on their personal understanding of the health phenomena. -/- Results GK was negatively-associated with GET. Whereas GK did not directly predict the evaluation and effects of the genetic headlines, GET did. GK predicted the effects of the headlines indirectly via GET and via GET and existing causal beliefs. -/- Conclusion GET seem to predict unwarranted effects of exposure to news headlines about genetic science, whereas GK seems to indirectly mitigate the same unwarranted effects. (shrink)

People’s comfort with and acceptability of artificial intelligence (AI) instantiations is a topic that has received little systematic study. This is surprising given the topic’s relevance to the design, deployment and even regulation of AI systems. To help fill in our knowledge base, we conducted mixed-methods analysis based on a survey of a representative sample of the US population (_N_ = 2254). Results show that there are two distinct social dimensions to comfort with AI: as a peer and as a (...) superior. For both dimensions, general and technological efficacy traits—locus of control, communication apprehension, robot phobia, and perceived technology competence—are strongly associated with acceptance of AI in various roles. Female and older respondents also were less comfortable with the idea of AI agents in various roles. A qualitative analysis of comments collected from respondents complemented our statistical approach. We conclude by exploring the implications of our research for AI acceptability in society. (shrink)

Interventional research on deceased organ donors and donor organs prior to transplant holds the promise of reducing the number of patients who die waiting for an organ by expanding the pool of transplantable organs and improving transplant outcomes. However, one of the key challenges researchers face is an assumption that someone who receives an organ that was part of an interventional research protocol is always a human subject of that same study. The consequences of this assumption include the need for (...) oversight by an institutional review board and for research-level informed consent from transplant recipients, all within the complex practical realities of the organ donation and transplantation process in the United States. The current national focus on this issue provides an opportunity to think critically about the policy goals of the human subjects regulations and their application to the nascent field of deceased organ donor intervention research. We propose that for donor research where the transplant recipient does not fall under the definition of human subject, the clinical consent model—rather than the consent model used for human research subjects—best facilitates the policy objectives of balancing clinical innovation, transparency, and protection of patients in an ethically responsible and legally compliant manner. (shrink)

Cross-sectorial, dynamic, and innovative partnerships are essential to resolve the challenges of humankind in the 21st century. At the same time, trust in each other’s integrity and good will is a precondition for the solution of any complex problem, and certainly for the success of the United Nations Sustainable Development Agenda. Experience shows that a nation’s economic and social success is at its greatest if, and when, there is cooperation and even cocreation involving a fair division of labor and (...) responsibility among the different societal stakeholders. This paper uses Ralf Dahrendorf’s seminal work on obligations, as well as the European Commission’s Science with and for Society unit’s definition of responsible research and innovation (RRI), to motivate industry responsibilities to make the world a healthier place. (shrink)

Hegel's Philosophy of Right was his last systematic work and the most complete statement of his mature views on ethical and political philosophy. It explores the relationships between three distinct conceptions of human freedom: persons as possessing contract rights, subjects as reflective moral agents, and individuals as members of an ethical community. It strongly influenced the early Marx and with the rise of debates over liberalism and communitarianism in the latter half of the twentieth century. In this volume an outstanding (...) line up of contributors examine the nature and impact of Hegel's Philosophy of Right. A diverse array of topics is examined, ranging from Hegel's account of rights, freedom, the state and history to some hitherto relatively overlooked topics such as Hegel and Luther, art and nationality and Hegel and the market. Hegel's Philosophy of Right: Critical Perspectives on Freedom and History will be valuable reading for scholars of Hegel, nineteenth-century German philosophy, political philosophy and history of political thought. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Buddhist Women and Interfaith Work in the United StatesKate DuganWomen from a wide array of backgrounds and interest areas continue to shape the face of Buddhism in the United States—from women who encountered Buddhism during the women's movement in the 1960s to ordained women founding temples for large immigrant populations; from women carving out a space for Buddhism in colleges and universities to Buddhist women engaged in interfaith dialogue (...) and working in interreligious settings. As Buddhist scholar Rita Gross notes, the experiences of women in Buddhism in the United States are wide and varied.1Increasingly, whether they are ordained Buddhist nuns or are Buddhist activists, women in the United States are engaging with questions of interfaith conversations within this multireligious nation. Around the country, Buddhist nuns dialogue with their Catholic counterparts. In local communities, Buddhist women assume leadership roles in interfaith groups. Behind prison walls, women offer Buddhist meditation instruction. Some women introduce tenets of Buddhism to their communities, while others promote justice with people from various faith traditions. On college campuses, Buddhist women work as chaplains and women Buddhologists integrate Buddhism and interfaith dialogue into their academic interests. This article aims to explore several snapshots of Buddhist women engaged in interfaith dialogue and working as Buddhists in interreligious settings; it is not intended to provide all-inclusive coverage of the many and diverse women in Buddhism in the United States engaged with an increasingly religiously diverse country.2Historical Glance: Buddhist Women and Interfaith Dialogue in the United StatesRita Gross suggests that women in the United States began practicing Buddhism in the 1960s and 1970s because "the basic teachings [of Buddhism] were gender-free and gender-neutral, and many found the practice of meditation... intensely liberating."3 Yet, the history of Buddhism is dominated by patriarchal structures and male-centered liturgical and ordination practices. As Buddhism [End Page 31] grew American roots, women found that "deeper explorations into the traditional texts revealed misogynistic passages as well as a strong overall tendency to favor men over women in matters of study and practice."4 No longer certain that Buddhism was any less fettered by patriarchy than other traditions, uneasiness bubbled within the experiences of Buddhist women.In the early 1980s, Cambridge Buddhist Association member Suzie Bowman noted the similarities among women's experiences of American Buddhism—including struggles of motherhood in a tradition that emphasizes the quiet of meditation halls and an alarming number of stories about abusive male teachers. In 1983, Bowman and the Providence Zen Center hosted a conference called "The Feminine in Buddhism"; seventy women attended. A two-day conference, with 120 participants, followed in 1984. In 1985, they hosted a three-day gathering.5These inspired budding Buddhist Sandy Boucher to take to the road to understand Buddhism in women's lives. She interviewed more than one hundred Buddhist women in their homes, workplaces, sangha. In Turning the Wheel: American Women Creating the New Buddhism, Boucher paints portraits of women in Buddhism in the United States in the mid 1980s—immigrant women from Asia who transplanted their Buddhism, white women who discovered Buddhism in tandem with feminism, women of color who encountered a white-dominated Buddhism. In these women's experiences, she suggests, is American Buddhism with "the possibility for the creation of a religion fully inclusive of women's realities."6Against this background, Rita Gross was blazing a trail for Buddhist women in interfaith dialogue. In 1980, an eager Gross attended the first International Buddhist-Christian Dialogue conference. She presented ideas that, twenty years later she says, encompassed "everything to which I have devoted my scholarly attention:... feminism, non-Christian religions, accurate information about world religions, Buddhism, Buddhism and feminism, interreligious interchange, even theology of religion."7 After this first splash, Rita Gross attended the 1984 International Buddhist-Christian Theological Encounter—the only woman in attendance.8 The organizers were eager to have more women participate; so was Gross. After that conference, she made her further involvement contingent upon more women's involvement. Because of this insistence, members did, and continue to, work toward equal gender representation.9 In 1992, Gross explained, from a personal perspective, the potential... (shrink)

This article explores the idea of community and ‘internal concord’ in a radically divided, post-independence Haiti. As the country negotiated the process of decolonization from France, Haitian political writings and speeches repeatedly returned to the problem of how a truly united Haiti might be envisaged. These reworkings of the idea of community were instrumental in the work of postcolonial nation-building in Haiti in the first half of the nineteenth century. Yet the publication of Haiti's Rural Code in 1826 gives (...) a different perspective on the process of national construction of community through work, particularly agricultural labour. The article seeks to look beyond the ideals of unity and Concordia which were being vigorously proclaimed at the time, in order to understand the impact of questions of work and worklessness on political discourse surrounding the idea of postcolonial community in nineteenth-century Haiti. (shrink)

On 1 December 2019, over one hundred Aboriginal nations performed ancestral and creation dances in synchrony across the Australian continent. One of the communities that danced was the Anaiwan nation from the north-eastern region of New South Wales, Australia. Since 2014 I have been working with Anaiwan people in a collaborative activist research project, creating and maintaining an Aboriginal community garden on the fringes of my hometown of Armidale as a site for land reclamation and decolonising, multispecies research. The (...) community garden is adjacent to the site of the old East Armidale Aboriginal Reserve, where over one hundred dispossessed Aboriginal people were forced to live on the municipal town garbage depot in the mid-twentieth century. This paper positions both the Nation Dance 2019 movement, and the Armidale Aboriginal Community Garden, as rhythmic events that activate Aboriginal Law and sovereignty that is held enduring in the land but that has been buried alive by the settler-colonial state. Focusing on the tensions between deep Indigenous ancestral temporality and colonial territoriality, I argue that the emergence of the Anthropocene reveals a dangerous dissonance between the rhythms of Aboriginal Law patterned through present-day Australian environments and the grid-based structures of colonial governance imposed upon them. (shrink)

This paper reports on the experiences of creative practice graduate researchers and academic staff as they seek to comply with the requirements of the Australian National Statement on the Ethical Conduct of Research Involving Humans. The research was conducted over a two-year period as part of a wider project ‘iDARE – Developing New Approaches to Ethics and Research Integrity Training through Challenges Presented by Creative Practice Research’. The research identified the appreciation of ethics that the participants acquired through their experience (...) of institutional research ethics procedures at their university. It also revealed a disjunction between the concepts of ethics acquired through meeting institutional research ethics requirements, the notion of ethics that many researchers adopt in their own professional creative practice and the contents of professional codes of conduct. A key finding of the research was that to prepare creative practice graduates for ethical decision-making in their professional lives, research ethics training in universities should be broadened to encompass a variety of contexts and enable researchers to develop skills in ethical know-how. (shrink)

In recent years, the government, advocacy organizations, the press, and the public have pressured universities, academic medical centers, and physicianinvestigators to do more to ensure that their financial interests and relationships do not conflict with their duties to conduct high-quality research and protect the safety and welfare of clinical trial participants. A number of factors underlie the increased focus. First, private sector funding of clinical research has grown both in absolute terms and as a proportion of overall funding. In 2008, (...) the pharmaceutical, medical device, and biotechnology industries’ domestic research and development expenditures constituted approximately 60.9% of funding for biomedical research in the United States; the next largest funder, the National Institutes of Health, funded 27.9%. Private industry spent $58.6 billion on research in 2007, up from $40 billion in 2003, an increase of 25% after adjusting for inflation. (shrink)

In this article I explore one core feature of contemporary campaigns for justice for Ireland’s Magdalen women concerning their deaths and disappearances, which continue to be denied by a State that has only recently started to acknowledge civilian deaths in other contexts such as armed conflict. I examine the treatment of the disappeared and deceased Magdalen women in the economic and political context of the Irish use of religious institutions and consider the significance of this regime for women’s citizenship in (...) the postcolonial nation-building processes of the twentieth century. I aim to illustrate the connections between gender, violence and citizenship that are implicated in outcomes for justice for Magdalen survivors and victims, as well as conceptions of Irish women’s citizenship in general. In this discussion I consider the Magdalen campaigns for justice as significant for the individual women and families involved, as well as the entire nation’s conception of self as represented in history. (shrink)

Jones, Kate Too many young people live in aged care nursing homes in Australia because there is a shortage of suitable alternatives. The Young People in Nursing Homes National Alliance confirms this, and advises that one young person is admitted into nursing home care every day. Part two of this article will follow in the next issue of this Bulletin.

Improvements in production methods over the last two decades have resulted in aquaculture becoming a significant contributor to food production in many countries. Increased efficiency and production levels are off-setting unsustainable capture fishing practices and contributing to food security, particularly in a number of developing countries. The challenge for the rapidly growing aquaculture industry is to develop and apply technologies that ensure sustainable production methods that will reduce environmental damage, increase productivity across the sector, and respect the diverse social and (...) cultural dimensions of fish farming that are observed globally. The aquaculture industry currently faces a number of technology trajectories, which include the option to commercially produce genetically modified (GM) fish. The use of genetic modification in aquaculture has the potential to contribute to increased food security and is claimed to be the next logical step for the industry. However, the potential use of these technologies raises a number of important ethical questions. Using an ethical framework, the Ethical Matrix, this paper explores a number of the ethical issues potentially raised by the use of GM technologies in aquaculture. Several key issues have been identified. These include aspects of distributive justice for producers; use of a precautionary approach in the management of environmental risk and food safety; and impacts on the welfare and intrinsic value of the fish. There is a need to conduct a comparative analysis of the full economic cycle of the use of GM fish in aquaculture production for developing countries. There is also a need to initiate an informed dialogue between stakeholders and strenuous efforts should be made to ensure the participation of producers and their representatives from developing nations. An additional concern is that any national licensing of the first generation of GM fish, i.e., in the USA, may initiate and frame an assessment cycle, mediated by the WTO, which could dominate the conditions under which the technology will be applied and regulated globally. Therefore, an integrated analysis of the technology development trajectories, in terms of international policy, IPR, and operational implications, as well as an analysis of a broader range of ethical concerns, is needed. (shrink)

This article examines how federal law enforcement has responded to the opioid epidemic nationally and in a variety of locales. We focus in depth on two initiatives, including prosecution in opioid-death cases, undertaken by the U.S. Attorney's Office in Connecticut.

This study explores the institutional logics and socialization experiences of STEM doctoral students in the context of the current American economic narrative that is specific to science and technology. Data from qualitative interviews with 36 students at three research universities first reveals a disconnect between a well-established national science and technology policy narrative that is market-oriented and the training, experiences, and perspectives of science and engineering doctoral students. Findings also indicate science and engineering doctoral students mostly understand entrepreneurship and innovation (...) in the contexts of funding research activities and creating social impact, which parallel rather than oppose dominant academic values and norms. Based on the findings, we contend that it is both possible and prudent for universities and graduate programs to pursue strategies that align science and engineering doctoral education with the current national economic agenda and support the personal, professional values and perspectives of students without coming in conflict with the scientific core of the academy. (shrink)

Despite recommendations from the Cartwright Report ethical review by health ethics committees has continued in New Zealand without health practitioners ever having to acknowledge their dual roles as health practitioners researching their own patients. On the other hand, universities explicitly identify doctor/research-patient relations as potentially raising conflict of role issues. This stems from the acknowledgement within the university sector itself that lecturer/research-student relations are fraught with such conflicts. Although similar unequal relationships are seen to exist between health researchers and their (...) patients, the patient/subjects are not afforded the levels of protection that are afforded student/subjects. In this paper we argue that the difference between universities and health research is a result of the failure of the Operational Standard Code for Ethics Committees to explicitly acknowledge the vulnerability of the patient and conflict of interests in the dual roles of health practitioner/researcher. We end the paper recommending the Ministry of Health consider the rewriting of the Operational Standard Code for Ethics Committees, in particular in the rewriting of section 26 of the Operational Standard Code for Ethics Committees. We also identify the value of comparative ethical review and suggest the New Zealand's Health Research Council's trilateral relationship with Australia's NHMRC (National Health and Medical Research Council) and Canada's CIHR (Canadian Institute of Health Research) as a useful starting point for such a process. (shrink)

The recent financial crisis and Great Recession have been compared to other historical moments during which significant shifts in regimes of market governance have occurred. Here, we engage with the pieces that follow in this special section of Politics & Society as we consider three dimensions along which global market governance might be transformed in the direction of greater democracy. First, given that problems of market governance often extend across national boundaries, enhanced intergovernmental coordination could play a key role in (...) promoting the public interest. Second, broader country representation would help to ensure that the interests of different national publics are more fully addressed. Third, wider social participation would expand the definition of the public interest at both the national and global levels, allowing a range of social groups to enhance the quality of their representation by governments and IGOs, and to engage more directly in the project of market governance. (shrink)

The specialist field of intellectual disability nursing has been subjected to a number of changes since the move towards deinstitutionalisation from the 1970s. Government policies sought to change the nature of the disability workforce from what was labelled as a medicalised approach, towards a more socially oriented model of support. Decades on however, many nurses who specialise in the care of people with intellectual disability are still employed. In Australia, the advent of the National Disability Insurance Scheme offers an apt (...) moment to reflect upon these decades of specialised nursing care as the context of this nursing care will continue to evolve. A review of the published literature was conducted to explore what has shaped the field in the past and how this might inform the future of this speciality area under new policy and service contexts. People with intellectual disability have specific health and support needs that require a specialised workforce. Specialist nurses continue to be needed for people with intellectual disability. (shrink)

This article examines the definitions of literacy in operation in secondary schools, and the relationship between official literacy policy and the practices of the agents responsible for implementing this policy. We trace the history of national 'policy' back to the Language Across the Curriculum movement of the 1970s as it provides an illustrative point of comparison with the first five years of the National Literacy Strategy. Drawing on empirical data which illuminate the views, perceptions and practices of key agents on (...) a number of levels, we critically review the concept of 'school literacy' promoted in government policy, defining it as 'school-centric literacy' and question its ability to facilitate participation in the practices associated with the media and technological literacies which are increasingly a feature of school life. There is evidence of some unplanned effects of the current national policy but also that levels of agency, for literacy teachers in particular, may be rapidly diminishing. (shrink)

Despite recommendations from the Cartwright Report ethical review by health ethics committees has continued in New Zealand without health practitioners ever having to acknowledge their dual roles as health practitioners researching their own patients. On the other hand, universities explicitly identify doctor/research-patient relations as potentially raising conflict of role issues. This stems from the acknowledgement within the university sector itself that lecturer/research-student relations are fraught with such conflicts. Although similar unequal relationships are seen to exist between health researchers and their (...) patients, the patient/subjects are not afforded the levels of protection that are afforded student/subjects. In this paper we argue that the difference between universities and health research is a result of the failure of the Operational Standard Code for Ethics Committees to explicitly acknowledge the vulnerability of the patient and conflict of interests in the dual roles of health practitioner/researcher. We end the paper recommending the Ministry of Health consider the rewriting of the Operational Standard Code for Ethics Committees, in particular in the rewriting of section 26 of the Operational Standard Code for Ethics Committees. We also identify the value of comparative ethical review and suggest the New Zealand's Health Research Council's trilateral relationship with Australia's NHMRC (National Health and Medical Research Council) and Canada's CIHR (Canadian Institute of Health Research) as a useful starting point for such a process. (shrink)

BackgroundAs Canadian global health researchers who conducted a qualitative study with adults with and without disabilities in Uganda, we obtained ethics approval from four institutional research ethics boards (two in Canada and two in Uganda). In Canada, research ethics boards and researchers follow the research ethics norms of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2), and the National Guidelines for Research Involving Humans as Research Participants of Uganda (NGRU) in Uganda. The preparation and implementation of this (...) qualitative research raised specific ethical issues related to research participant privacy and the importance of availability and management of financial resources.Main bodyOur field experience highlights three main issues for reflection. First, we demonstrate that, in a global health research context, methodological and logistic adjustments were necessary throughout the research implementation process to ensure the protection of study participants’ privacy, especially that of people with disabilities, despite having followed the prescribed Canadian and Ugandan ethics norms. Data collection and management plans were adapted iteratively based on local realities. Second, securing financial support as a key aspect of financial management was critical to ensure privacy through disability-sensitive data collection strategies. Without adequate funding, the recruitment of research participants based on disability type, sex, and region or the hiring of local sign language interpreters would not have been possible. Third, although the TCPS2 and NGRU underscore the significance of participants’ privacy, none of these normative documents clearly express this issue in the context of global health research and disability, nor broadly discuss the ethical issue related to financial availability and management.ConclusionsConducting research in resource limited settings and with study participants with different needs calls for a nuanced and respectful implementation of research ethics in a global health context. We recommend a greater integration in both the TCPS2 and NGRU of global health research, disability, and responsible conduct of research. This integration should also be accompanied by adequate training which can further guide researchers, be they senior, junior, or students, and funding agencies. (shrink)

The new science of genomics endeavors to chart the genomes of individuals around the world, with the dual goals of understanding the role genetic factors play in human health and solving problems of disease and disability. From the perspective of indigenous peoples and developing countries, the promises and perils of genomic science appear against a backdrop of global health disparity and political vulnerability. These conditions pose a dilemma for many communities when attempting to decide about participating in genomic research or (...) any other biomedical research. Genomic research offers the possibility of improved technologies for managing the acute and chronic diseases that plague their members. Yet, the history of particularly biomedical research among people in indigenous and developing nations offers salient examples of unethical practice, misuse of data, and failed promises. This dilemma creates risks for communities who decide either to participate or not to participate in genomic science research. Some argue that the history of poor scientific practice justifies refusal to join genomic research projects. Others argue that disease poses such great threats to the well-being of people in indigenous communities and developing nations that not participating in genomic research risks irrevocable harm. Thus, some communities particularly among indigenous peoples have declined to participate as subjects in genomic research. At the same time, some communities have begun developing new guidelines, procedures, and practices for engaging with the scientific community that offer opportunities to bridge the gap between genomic science and indigenous and/or developing communities. Four new approaches warrant special attention and further support: consulting with local communities; negotiating the complexities of consent; training members of local communities in science and health care; and training scientists to work with indigenous communities. Implicit is a new definition of “rigorous scientific research,” one that includes both community development and scientific progress as legitimate objectives of genomic research. Innovative translational research is needed to develop practical, mutually acceptable methods for crossing the divide between genomic researchers and indigenous communities. This may mean the difference between success and failure in genomic science, and in improving health for all peoples. (shrink)

The new science of genomics endeavors to chart the genomes of individuals around the world, with the dual goals of understanding the role genetic factors play in human health and solving problems of disease and disability. From the perspective of indigenous peoples and developing countries, the promises and perils of genomic science appear against a backdrop of global health disparity and political vulnerability. These conditions pose a dilemma for many communities when attempting to decide about participating in genomic research or (...) any other biomedical research. Genomic research offers the possibility of improved technologies for managing the acute and chronic diseases that plague their members. Yet, the history of biomedical research among people in indigenous and developing nations offers salient examples of unethical practice, misuse of data and failed promises. This dilemma creates risks for communities who decide either to participate or not to participate in genomic science research. (shrink)

© JNCCN-Journal of the National Comprehensive Cancer Network.Background: Next-generation tumor sequencing panels, which include multiple established and novel targets across cancers, are emerging in oncology practice, but lack formal positive coverage by US payers. Lack of coverage may impact access and adoption. This study identified challenges of NGTS coverage by private payers.Methods: We conducted semi-structured interviews with 14 NGTS experts on potential NGTS benefits, and with 10 major payers, representing more than 125,000,000 enrollees, on NGTS coverage considerations. We used the (...) framework approach of qualitative research for study design and thematic analyses and simple frequencies to further describe findings.Results: All interviewed payers see potential NGTS benefits, but all noted challenges to formal coverage: 80% state that inherent features of NGTS do not fit the medical necessity definition required for coverage, 70% view NGTS as a bundle of targets versus comprehensive tumor characterization and may evaluate each target individually, and 70% express skepticism regarding new evidence methods proposed for NGTS. Fifty percent of payers expressed sufficient concerns about NGTS adoption and implementation that will preclude their ability to issue positive coverage policies.Conclusions: Payers perceive that NGTS holds significant promise but, in its current form, poses disruptive challenges to coverage policy frameworks. Proactive multidisciplinary efforts to define the direction for NGTS development, evidence generation, and incorporation into coverage policy are necessary to realize its promise and provide patient access. This study contributes to current literature, as possibly the first study to directly interview US payers on NGTS coverage and reimbursement. (shrink)

Rates of firearm injury and mortality are far higher in the United States compared to other high-income nations. Patterns of firearm injury have complex causal pathways; different social contexts may be differentially affected by firearm legislation. In the context of the diversity of social, political, and legal approaches at the state level, we suggest the application of the social ecological model as a conceptual public health framework to guide future policy interventions in the U.S.

While the impacts of the Affordable Care Act will vary across the states given their different circumstances, Massachusetts’ 2006 reform initiative, the template for national reform, provides a preview of the potential gains in insurance coverage, access to and use of care, and health care affordability for the rest of the nation. Under reform, uninsurance in Massachusetts dropped by more than 50%, due, in part, to an increase in employer-sponsored coverage. Gains in health care access and affordability were widespread, (...) including a 28% decline in unmet need for doctor care and a 38% decline in high out-of-pocket costs. (shrink)

Population-based research is enhanced by biological measures, but biological sampling raises complex ethical issues. The third British National Survey of Sexual Attitudes and Lifestyles (Natsal-3) will estimate the population prevalence of five sexually transmitted infections (STIs) (Chlamydia trachomatis, Neisseria gonorrhoeae, human papillomavirus (HPV), HIV and Mycoplasma genitalium) in a probability sample aged 16–44 years. The present work describes the development of an ethical approach to urine testing for STIs, including the process of reaching consensus on whether to return results. The (...) following issues were considered: (1) testing for some STIs that are treatable and for which appropriate settings to obtain free testing and advice are widely available (Natsal-3 provides all respondents with STI and healthcare access information), (2) limits on test accuracy and timeliness imposed by survey conditions and sample type, (3) testing for some STIs with unknown clinical and public health implications, (4) how a uniform approach is easier to explain and understand, (5) practical difficulties in returning results and cost efficiency, such as enabling wider STI testing by not returning results. The agreed approach, to perform voluntary anonymous testing with specific consent for five STIs without returning results, was approved by stakeholders and a research ethics committee. Overall, this was acceptable to respondents in developmental piloting; 61% (68 of 111) of respondents agreed to provide a sample. The experiences reported here may inform the ethical decision making of researchers, research ethics committees and funders considering population-based biological sampling. (shrink)

“One is not born a woman, but becomes one”, Simone de Beauvoir A symbol of liberated womanhood, Simone de Beauvoir's unconventional relationships inspired and scandalised her generation. A philosopher, writer, and feminist icon, she won prestigious literary prizes and transformed the way we think about gender with The Second Sex. But despite her successes, she wondered if she had sold herself short. Her liaison with Jean-Paul Sartre has been billed as one of the most legendary love affairs of the twentieth (...) century. But for Beauvoir it came at a cost: for decades she was dismissed as an unoriginal thinker who 'applied' Sartre's ideas. In recent years new material has come to light revealing the ingenuity of Beauvoir's own philosophy and the importance of other lovers in her life. This ground-breaking biography draws on never-before-published diaries and letters to tell the fascinating story of how Simone de Beauvoir became herself. (shrink)

Reading Kate Daloz's We Are as Gods at the dawn of the new age of Trump is just begging for an out-of-body experience. This may not be inappropriate. At a moment when a nihilistic form of antipolitics is consuming the nation, transmogrifying the world and its people into raw ore for extraction, and deriding any conception of public good or even common good, Daloz's stunning new history is a powerful reminder of the alternatives Americans once lived and the (...) creative ways in which they shaped community.The centerpiece of Daloz's account is a subtle portrayal of a network of communities and people that rippled out from Myrtle Hill, a thinly veiled pseudonym for a 1960s- and 1970s-era commune high in Vermont's... (shrink)

Down Girl is a broad, original, and far ranging analysis of what misogyny really is, how it works, its purpose, and how to fight it. The philosopher Kate Manne argues that modern society's failure to recognize women's full humanity and autonomy is not actually the problem. She argues instead that it is women's manifestations of human capacities -- autonomy, agency, political engagement -- is what engenders misogynist hostility.

Subversive Pedagogies draws attention to creative and critical pedagogies as a resource for engaging pressing problems in global politics. The collection explores the radical potential of pedagogy to transform students, scholars, citizens and institutions. It brings together scholars and students from a range of disciplinary backgrounds, including international relations, political science, indigenous studies, feminist theory and theatre studies, as well as practitioners in theatre and the arts. These diverse voices explore innovative pedagogical practices that extend our understanding of where pedagogy (...) happens, invite critical assessment of the ways the neoliberal university shapes and restricts pedagogical engagement, and offer both theoretical and practical tools to explore more creative and broader understandings of what pedagogy can and should do. (shrink)