The New Transnational Activism shows how even the most prosaic activities can assume broader political meanings when they provide ordinary people with the experience of crossing transnational space. This means that we cannot be satisfied with defining transnational activists through the ways they think. The defining feature of transnationalism in this book is relational, and not cognitive. This emphasis on activism's relational structure means that even as they make transnational claims, transnational activists draw on the resources, the networks, and the (...) opportunities in which they are embedded, and only then - if at all - on more distant transnational links. But we can no more sharply draw a line between domestic and international politics in studying transnational activism than we could ignore local politics in studying its national equivalent. Understanding the processes that link the local, the national and the international is the major undertaking of the book. (shrink)

Many scholars have investigated the relationship between protest and repression. Less often examined is the legislative suppression of protest by elites seeking to make protest more costly to protesters. Because state legislatures are largely invisible to the public, this “wholesale” suppression of protest is less likely to trigger public opposition than repression by the police. This study explains the sharp increase in the number and the severity of state legislative bills to repress the right to protest both before and after (...) the election of Donald Trump. In particular, it examines whether these can be attributed either to Republican control of state legislatures or to protest threat. Contrary to the findings in much of the literature, bills aimed at suppressing protest are less closely related to threat than to the realignment of state politics. The article also finds that these proposals were influenced by diffusion through policy brokerage. (shrink)

In Three Mystics Walk into a Tavern, Jalal ad-Din Rumi, Moses de León, and Meister Eckhart— three of the greatest mystics of all time—meet for an imaginary conversation that will inspire individuals of the twenty-first century to find their own spirituality and realize that everyone can be a mystic.

Background Several jurisdictions, including Singapore, Australia, New Zealand and most recently Ireland, have a public interest or public good criterion for granting waivers of consent in biomedical research using secondary health data or tissue. However, the concept of the public interest is not well defined in this context, which creates difficulties for institutions, institutional review boards and regulators trying to implement the criterion. Main text This paper clarifies how the public interest criterion can be defensibly deployed. We first explain the (...) ethical basis for requiring waivers to only be granted to studies meeting the public interest criterion, then explore how further criteria may be set to determine the extent to which a given study can legitimately claim to be in the public interest. We propose an approach that does not attempt to measure magnitude of benefit directly, but rather takes into account metrics that are more straightforward to apply. To ensure consistent and justifiable interpretation, research institutions and IRBs should also incorporate procedural features such as transparency and public engagement in determining which studies satisfy the public interest requirement. Conclusion The requirement of public interest for consent waivers in secondary biomedical research should be guided by well-defined criteria for systematic evaluation. Such a criteria and its application need to be periodically subject to intra-committee and intra-institution review, reflection, deliberation and amendment. (shrink)

ABSTRACTAdults use a variety of strategies to reason about fraction magnitudes, and this variability is adaptive. In two studies, we examined the relationships between mathematics anxiety, working memory, strategy variability and performance on two fraction tasks: fraction magnitude comparison and estimation. Adults with higher mathematics anxiety had lower accuracy on the comparison task and greater percentage absolute error on the estimation task. Unexpectedly, mathematics anxiety was not related to variable strategy use. However, variable strategy use was linked to more accurate (...) magnitude comparisons, especially among adults with lower working memory performance or those who use mathematics less frequently, as well as lower PAE on the estimation task. These findings shed light on the role of strategy variability in fraction problem solving and demonstrate a link between mathematics anxiety and fraction magnitude reasoning, a key predictor of general mathematics achievement. (shrink)

BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related risks, (...) as well as intrinsic goals such as promoting the respect of participants and their community. However, successful community engagement depends on the degree to which CABs legitimately represent and engage with communities targeted for research. Currently, there is little literature describing the use of CABs in genomics research taking place in developing countries, and even less in the field of genomics research relating to mental illness. The aim of this article is to describe and consider the contributions made by a researcher-driven, population-specific CAB in a genomics of schizophrenia research project taking place in South Africa, from the perspective of the research team.DiscussionFour broad discussion topics emerged during the CAB meetings namely: 1) informed consent procedures, 2) recruitment strategies, 3) patient illness beliefs and stigma experiences, and 4) specific ethical concerns relating to the project. The authors consider these discussions in terms of their contributions to instrumental and intrinsic goals of community engagement.SummaryThe CAB gave valuable input on the consent processes and materials, recruitment strategies and suggested ways of minimizing the potential for stigma and discrimination. All of these contributions were of an instrumental nature, and helped improve the way in which the research took place. In addition, and perhaps more importantly, the CAB made a unique and important contribution relating to intrinsic functions such as promoting the respect and dignity of research participants and their community. This was particularly evident in ensuring sensitivity and respect of the community’s traditional beliefs about schizophrenia and its treatment, and in this way promoting a respectful relationship between the research team and the participants. (shrink)

Una visión de la película de Lars Von Trier: Anticristo.

Dilemmas about resuscitation and life-prolonging treatment for severely compromised infants have become increasingly complex as skills in neonatal care have developed. Quality of life and resource issues necessarily influence management. Our Institute of Medical Ethics working party, on whose behalf this paper is written, recognises that the ultimate responsibility for the final decision rests with the doctor in clinical charge of the infant. However, we advocate a team approach to decision-making, emphasising the important role of parents and nurses in the (...) process. Assessing the relative burdens and benefits can be troubling, but doctors and parents need to retain a measure of discretion; legislation which would determine action in all cases is inappropriate. Caution should be exercised in involving committees in decision-making and, where they exist, their remit should remain to advise rather than to decide. Support for families who bear the consequences of their decisions is often inadequate, and facilitating access to such services is part of the wider responsibilities of the intensive care team. The authors believe that allowing death by withholding or withdrawing treatment is legitimate, where those closely involved in the care of the infant together deem the burdens to be unacceptable without compensating benefits for the infant. As part of the process accurate and careful recording is essential. (shrink)

BackgroundMulti-centre studies generally cost more than single-centre studies because of larger sample sizes and the need for multiple ethical approvals. Multi-centre studies include clinical trials, clinical quality registries, observational studies and implementation studies. We examined the costs of two large Australian multi-centre studies in obtaining ethical and site-specific approvals.MethodsWe collected data on staff time spent on approvals and expressed the overall cost as a percent of the total budget.ResultsThe total costs of gaining approval were 38 % of the budget for (...) a study of 50 centres (mean cost AUD $6960 per site) and 2 % for a study of 11 centres (mean cost AUD $2300 per site). Seventy-five and 90 % of time was spent on repeated tasks, respectively, and many time-consuming tasks, such as reformatting documents, did nothing to improve the study design or participant safety.ConclusionsImprovements have been made to the ethical approval application system, but more gains could be made without increasing risks of harm to research participants. We propose that ethical review bodies and individual sites publish statistics on how long they take to process approvals which could then be nationally benchmarked. (shrink)

Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during (...) this consent process? 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant’s consent. Participants recruited from the South African Eastern Cape, and older participants, were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness nor education were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies. (shrink)

Suffering patients (when able), grieving families and compassionate physicians have always sought the least detrimental alternative while deciding care in the face of tragedy. Modern medical technology has brought great benefits to patients but has blurred traditional concepts of life and death and created new dilemmas for practising doctors. While this technology has given doctors great control over living and dying, their dominance in critical decision making is being challenged. More and more their decisions are liable to public and legal (...) scrutiny, intense publicity by the news media and exploitation by lobbyists with opposing aims. Increasing pressure of this kind may deflect the physician form his primary responsibility to patients and their families. For infants with gross malformations or a distressing terminal illness we believe that the parents and their doctors must be allowed primary decisional power even if the chosen course of action involves the death of the infant. Choices for death should be permitted but only after suitable family and professional consultation. Some general guidelines are suggested. As these situations are so varied and so complex, much latitude in decision-making should be expected and tolerated. (shrink)

Randomized controlled trial trial designs exist on an explanatory-pragmatic spectrum, depending on the degree to which a study aims to address a question of efficacy or effectiveness. As conceptualized by Schwartz and Lellouch in 1967, an explanatory approach to trial design emphasizes hypothesis testing about the mechanisms of action of treatments under ideal conditions, whereas a pragmatic approach emphasizes testing effectiveness of two or more available treatments in real-world conditions. Interest in, and the number of, pragmatic trials has grown substantially (...) in recent years, with increased recognition by funders and stakeholders worldwide of the need for credible evidence to inform clinical decision-making. This increase has been accompanied by the onset of learning healthcare systems, as well as an increasing focus on patient-oriented research. However, pragmatic trials have ethical challenges that have not yet been identified or adequately characterized. The present study aims to explore the views of key stakeholders with respect to ethical issues raised by the design and conduct of pragmatic trials. It is embedded within a large, four-year project that seeks to develop guidance for the ethical design and conduct of pragmatic trials. As a first step, this study will address important gaps in the current empirical literature with respect to identifying a comprehensive range of ethical issues arising from the design and conduct of pragmatic trials. By opening up a broad range of topics for consideration within our parallel ethical analysis, we will extend the current debate, which has largely emphasized issues of consent, to the range of ethical considerations that may flow from specific design choices. Semi-structured interviews with key stakeholders, across multiple jurisdictions, identified based on their known experience and/or expertise with pragmatic trials. We expect that the study outputs will be of interest to a wide range of knowledge users including trialists, ethicists, research ethics committees, journal editors, regulators, healthcare policymakers, research funders and patient groups. All publications will adhere to the Tri-Agency Open Access Policy on Publications. (shrink)

The unbridled use of modern medical skills and technology in preserving life at all costs has stimulated interest in expressing a 'right to die' by the legally competent patient who is anxious to protect his autonomy. Some recent decisions by American courts are seen to threaten this 'right to die' of competent patients and imply that legally incompetent patients including children should not have this right under any circumstances, even when expressed on their behalf by guardians, nearest relatives or parents. (...) It is argued that this is contrary to 'natural justice' as viewed by most people. It should be possible to develop procedures which are protective of the basic 'right to life' of the incompetent yet will recognise circumstances where they could be allowed to die. This paper was presented at the 1983 annual conference of the London Medical Group, 'Human Rights in Medicine'. (shrink)