bluuebunny/crossref_metadata_2025_split huggingface dataset:
Research Ethics Board/Institutional Review Board Variability and Other Ethical Challenges in Multi-Site Research Involving Participants on the Autism Spectrum
Authors: Salt Mackenzie 
Published: October 2019

Abstract
Doing research at multiple sites can create ethical challenges for researchers, especially those working with vulnerable populations. During the ethical review process, different research ethics boards can disagree on interpretations of research ethics concepts such as capacity to consent, vulnerability, and autonomy. In this chapter, experience in conducting a multi-year, multicentre study involving studying the communication skills of adults with autism is discussed, and the ethical challenges that arose are addressed, focusing on ethical challenges of recruiting participants from multiple sites and detailing interactions with the various research ethics boards involved. Advice and suggestions are provided for other researchers on how to address some of the challenges in doing multicentre research involving participants from vulnerable populations.
Mediators of Inclusion
Authors: Cox Vanessa , Orchard Treena , Cushing Pamela , Kinsella Elizabeth Anne 
Published: October 2019

Abstract
Adults with mild intellectual disability (MID) often rely on professionals and family for support, giving caregivers the power to control many aspects of their daily lives This extends to research, where investigators wanting to include adults with MID must seek the cooperation of caregivers. This chapter features data from a qualitative study conducted in London, Ontario, that explored independence, sexuality, and social relationships in 15 adults with MID, six family caregivers, and six professionals. Key findings discussed here include the ways in which caregivers influence socio-sexual relationships in adults with MID, the challenges to including adults with MID in research, and the experiences of adults with MID as study participants. These findings contribute new insights to the disability literature that explores research inclusion in adults with MID, as well as the nature of socio-sexual life among these adults, whose first-hand experiences are rarely included in qualitative research.
Informed Consent for Next-Generation Deep Brain Stimulation Psychiatric Research
Authors: Klein Eran 
Published: October 2019

Abstract
Deep brain stimulation (DBS) for psychiatric illness raises challenges for informed consent. Some of these are well recognized, such as vulnerability and unrealistic expectations, problems with capacity to consent, and scientific and safety uncertainties in implantable device research. The next generation of DBS for treatment of psychiatric illnesses may be closed-loop (or brain–computer interface-modulated) or volitionally controlled. That is, the activity of deep brain stimulating electrodes will be modulated with feedback from additional cortical or deep brain implanted recording electrodes. Six challenges for informed consent in next-generation psychiatric DBS are reviewed. These challenges are illustrated by expanding on results of a recently published qualitative study of individuals in research trials of DBS for depression and obsessive–compulsive disorder. An argument is offered that engaging with end users and potential end users of neural devices about ethical concerns is an important step in improving informed consent practices related to emerging neurotechnologies.
Making Research More Ethical for Adults with Fetal Alcohol Spectrum Disorder
Authors: Aspler John 
Published: October 2019

Abstract
In this chapter, the author reflects on challenges associated with conducting focus group interviews with adults with fetal alcohol spectrum disorder (FASD)—a complex neurodevelopmental disability caused by alcohol exposure in utero. Given the heterogeneity of this diagnosis, people with FASD have different strengths and weaknesses. Therefore, for effective and ethical research inclusion, each person with FASD may need unique accommodations, which can help to both minimize concerns about unjust research exclusion and mitigate sources of vulnerability. To explore these issues, the author describes the focus group study, presents anticipated risks and challenges, explores critical stakeholder feedback, and addresses ethical tensions arising from the resulting protocol adjustments. This chapter demonstrates the importance of researchers remaining open to criticism and being willing to work through their moral discomfort.
The Mindset of Surrogates and Inclusivity Research
Authors: Barnbaum Deborah R. 
Published: October 2019

Abstract
This commentary considers three aspects of Britteny Howell and Karrie Shogren’s chapter “Differing Understandings of Informed Consent Held by Research Institutions, People With Intellectual Disability, and Guardians: Implications for Inclusive, Ethical Research” (Chapter 3). First, strengths of their discussion are considered. Second, a philosophical distinction amongst three justifications for surrogate decisions is elaborated upon, and is used conceptually to ground claims in Howell and Shogren’s chapter. Finally, it is suggested that illustrating this distinction to surrogate decision-makers may bolster the participation of persons with intellectual disabilities in research.
Joining Voices
Authors: Kohler Anne , Majewski Benjamin 
Published: October 2019

Abstract
In this chapter anthropologist Anne Kohler and research assistant Benjamin Majewski discuss the process for and stakes of including researchers with intellectual disabilities in social science research. For Benjamin, who has Down syndrome, the opportunity to learn about and participate in ethnographic research as a stakeholder rather than simply a participant helped him to understand that “research is everywhere.” He advocates for social scientists to hire more people with cognitive differences as research partners.
Toward a Research Ethics Culture of Inclusion and Participation
Authors: Racine Eric 
Published: October 2019

Abstract
In many ways, the contributions in this book illustrate how the culture of research and research ethics presents challenges to the inclusion and participation of people with cognitive impairments as genuine agents. A culture of regulatory research ethics has institutionalized ethics as soft law with bureaucratic and administrative overtones. This development is problematic because of the need for more flexible and personalized approaches to foster the agency of research participants with cognitive impairments and differences. In my eyes, many chapters of this book are consistent with the development of deeper and richer forms of research ethics. They interrogate our established norms and standards on how to deal with research ethics issues given the differences encountered in the people with whom the research is done with the ultimate goal of fostering a profound and open-ended view of ethics in research.
The Status of Assisted Suicide
Authors: Sperling Daniel 
Published: October 2019

Abstract
This chapter discusses the legal status of assisted suicide. It explains that the legal regulation of assisted suicide follows broad political and public debates involving concerns for the sincerity and firmness of a person's wish to die, on the one hand, and for their right to end their life with the aid of another person, on the other, especially if they suffer from terminal illness. In the past, there have been attempts to implement laws decriminalizing assisted suicide and euthanasia. This chapter discusses how, ultimately, most legal cases that discuss the legality and constitutionality of assisted suicide laws attempt to balance a person's right to autonomy, human dignity, protection of privacy, or security with the sanctity of life and the public interest in formulating safeguards against abuse.
The Legality of Suicide Tourism
Authors: Sperling Daniel 
Published: October 2019

Abstract
This chapter examines the alternatives that countries of origin and countries where assisted suicide is legal may exercise with regard to suicide tourism. Specifically, it considers whether actions to limit or prohibit travel for assisted suicide or access to it within a person’s home country can be legally valid. On the one hand, legally restricting access to assisted suicide to residents only or to patients who have had a long-standing relationship with prescribing doctors suffers from much criticism and is difficult to justify. On the other hand, from the perspective of countries of origin, it is difficult and inappropriate to apply the doctrine of extraterritorial jurisdiction to the criminality of assisted suicide. The chapter also considers the strength of other suggestions in relation to international law, particularly the idea of ‘soft law’ regulation of the practice.
Parametric estimation and inference
Authors: Edge M. D. 
Published: October 2019

AbstractIf it is reasonable to assume that the data are generated by a fully parametric model, then maximum-likelihood approaches to estimation and inference have many appealing properties. Maximum-likelihood estimators are obtained by identifying parameters that maximize the likelihood function, which can be done using calculus or using numerical approaches. Such estimators are consistent, and if the costs of errors in estimation are described by a squared-error loss function, then they are also efficient compared with their consistent competitors. The sampling variance of a maximum-likelihood estimate can be estimated in various ways. As always, one possibility is the bootstrap. In many models, the variance of the maximum-likelihood estimator can be derived directly once its form is known. A third approach is to rely on general properties of maximum-likelihood estimators and use the Fisher information. Similarly, there are many ways to test hypotheses about parameters estimated by maximum likelihood. This chapter discusses the Wald test, which relies on the fact that the sampling distribution of maximum-likelihood estimators is normal in large samples, and the likelihood-ratio test, which is a general approach for testing hypotheses relating nested pairs of models.
Policy implications
Authors: Mackenbach Johan P. 
Published: October 2019

Abstract
Chapter 6 (‘Policy implications’) describes how several European countries have tried to reduce health inequalities. Even the well-resourced English strategy (1997–2010) has not reduced health inequalities at the population level, due to a combination of lack of evidence-based interventions and lack of scale of the efforts. Quantitative analyses of actually observed trends in European countries and of the potential impact of equalizing the distribution of risk factors show that reducing relative inequalities in health is almost impossible when overall health improves. It is therefore advisable to aim for reducing absolute inequalities in health, and to avoid overly ambitious quantitative targets. The book ends with a number of partly personal reflections on the sobering conclusions of 30 years of research, but also highlights some new inspirations for continued efforts to reduce health inequalities.
Axis Internationalism
Authors: Brydan David 
Published: October 2019

Abstract
This chapter explores the relationship between Spain and the Axis powers during the Second World War. Spanish experts were involved in intensive exchange with Nazi Germany during the war. This formed part of a wider pattern of cooperation between Axis, Axis-aligned, and neutral states under the auspices of the Nazi ‘New Order’. This chapter argues that the scientific networks, conferences, and organizations promoted by Nazi Germany represented a form of ‘Axis internationalism’, which appropriated the language and practices of pre-war internationalism to promote the idea of collaborative continental order under Nazi leadership. Spanish experts, like many of their European counterparts, were willing to embrace Axis internationalism as a new, and in many ways improved, form of international cooperation. Their work highlights how internationalist structures and ideas, particularly within the ‘technical’ and humanitarian fields of health and medicine, could be appropriated by political projects from across the ideological spectrum.
Franco’s Spain and the Politics of International Health
Authors: Brydan David 
Published: October 2019

Abstract
Liberal international health organizations such as the Rockefeller Foundation and the World Health Organization (WHO) played an important role in Spain’s post-war search for legitimacy, and social experts served as a vanguard for Spain’s integration into the United Nations system. The idea of international health as a technical, apolitical field was particularly important in enabling the Franco regime to overcome its outsider status. At the height of Spain’s diplomatic isolation after 1945, a fierce battle raged at the WHO over the question of Spanish membership, which saw it excluded from the new organization. But the WHO was one of the first international bodies Spain was admitted to in the 1950s, paving the way to full United Nations membership. Spain’s rapid integration into the WHO reflected the success of the Franco regime in exploiting the ‘technical’ and ‘apolitical’ language of international health to overcome international political opposition.
Sunday Reading
Authors: Lysack Krista 
Published: October 2019

Abstract
This chapter takes up the feel of the Victorian Sunday and its reputation for unrelenting lassitude and inertia. Sunday reading was, however, one means to address this temporal void, provided the reading materials were deemed acceptable. A list of suitable books for that day is frequently detailed in memoirs concerning the devout Evangelical upbringings of their authors. In the context of Victorian Sabbatarian debates, this chapter looks on the affects of Sunday boredom as an instance of stalled, long time before turning to a solution of sorts: Sunday-reading periodicals that, as the case of the weekly Evangelical periodical The Sunday at Home illustrates, offered a diversionary reprieve that could multiply readers’ experience of time, and even render the feeling of eternal waiting as more welcome moments of leisure. This kind of reading shows us how what we might think of as devotional contemplation was being re-temporalized as diversion.
Apportioning the Devotional Day
Authors: Lysack Krista 
Published: October 2019

Abstract
This chapter pursues the systematic dailiness of devotional reading in the form of daily-reading “textbooks,” which came on the market toward the end of the nineteenth century, not all of them explicitly religious. Textbooks extracted and re-arranged for diurnal re-reading of the works of well-regarded writers of the century. These included Alfred Tennyson, whose In Memoriam, famous for its theme of protracted mourning but also for its reputation to console the bereaved, was re-published in excerpted form as Day to Day With Tennyson and many other similar titles. With its assumption of daily and apportioned reading the textbook aligns, furthermore, with Victorian reading systems and with discourses of time-thrift. In other words, late-Victorian devotion was often less about inculcating theological content than it was about materializing reading as non-narrative, modular portions and returning the reader regularly to a sense of time as a series of renewable moments.
Figures of Dialogue
Authors: Morgan Oliver 
Published: October 2019

Abstract
The first half of this chapter uses the simplified model of turn sequencing outlined in Chapter 1 to develop a more precise vocabulary with which to talk about dialogical form. It proposes three new terms to describe how sequences of turns are built: intervention, blanking, and apostrophe. The second half of the chapter tests this approach on a series examples culled from the work of other critics: Mick Short on Buckingham’s attempt to claim his reward from the newly crowned Richard (Richard III, 4.2); Lynne Magnusson on Desdemona’s insistence that she follow her husband to Cyprus (Othello, 1.3); and Stephen Orgel on the reassignment of the ‘Abhorred slave’ speech from Miranda to Prospero (Tempest, 1.2). In each case, the turn-taking approach yields fresh insights, enabling us to make distinctions at a greater level of detail than had previously been possible.
The Terminal Comma
Authors: Morgan Oliver 
Published: October 2019

Abstract
This chapter investigates the relationship between turn-taking and punctuation. On the one hand, punctuation seems to offer a way of resolving precisely those ambiguities over timing with which the second half of this book is concerned. On the other hand, the punctuation of Shakespeare’s texts is notoriously unreliable. No firm set of typographical conventions had yet evolved for the presentation of plays in print, and the punctuation they contain is more likely to be compositorial than authorial. In spite of these problems, the chapter argues for greater attention to punctuation at the ends of speeches and, in particular, to what it calls the ‘terminal comma’ in the early quartos of A Midsummer Night’s Dream and King Lear. Although largely ignored by editors and critics, these commas are often employed with a purpose and subtlety that is hard—but not impossible—to attribute to a compositor.
Introduction
Authors: Morgan Oliver 
Published: October 2019

Abstract
The first half of this chapter provides a clear and non-technical explanation of what turn-taking is and why it matters. According to William Empson, the most important step in the solution of any literary critical problem is to identify ‘the right handle to take hold of the bundle’. The claim made here is simple: when the bundle is Shakespearean dialogue, the right handle is the turn at talk. This claim is then illustrated with a pair of examples—Isabella’s petitioning of Duke Vincentio in 5.1 of Measure for Measure and the final meeting between Hal and his father in 4.3 of 2 Henry IV—each of which yields fresh insights when analysed as an exchange of turns rather than speeches. The second half of the chapter situates the turn-taking approach in relation to previous work on Shakespearean dialogue, literary linguistics, and dramatic discourse.
To Be ‘Languaged’
Authors: Gallagher John 
Published: October 2019

Abstract
What did it mean to be able to speak another language in early modern England? Linguistic competence was more complicated than a simple binary between fluent and not. Just as historians have argued for the existence of multiple literacies in early modern England, so too were there multiple linguistic competences, depending on the speaker’s status, age, gender, origin, and occupation. Male and female language-learners had to master different ways of expressing superiority or deference and of managing ritualised interactions. Immigrants to England had to learn a new vernacular while accommodating themselves to new customs and rules of conversation. Reading the corpus of conversation manuals alongside broader discourses of gender, civility, speech, and behaviour, this chapter uncovers the dynamics of multilingual speech and silence in an age of encounter. More broadly, it offers a new framework for thinking historically about linguistic competence.
Introduction
Authors: Gallagher John 
Published: October 2019

Abstract
The introduction argues for the importance of language-learning and multilingualism in the history of early modern England. English-speakers who ventured beyond Dover could not rely on English and had to become language-learners, while even at home English urban life was often multilingual. It brings together early modern concepts of linguistic ability with approaches from sociolinguistics, historical linguistics, and the social history of language in order to show how we can think about linguistic competence in a historical perspective. It demonstrates the importance of ‘questions of language’ to the social, cultural, religious, and political histories of early modern England, and to the question of England’s place in a rapidly expanding world. After an overview of the book’s structure, aims, and parameters, it closes by asking how taking a polyglot perspective might shift our understandings of early modern English history.
Minding the Machine v2.0
Authors: Bygrave Lee A 
Published: October 2019

Abstract
This chapter focuses on Articles 22 and 25 of the EU’s General Data Protection Regulation (Regulation 2016/679). It examines how these provisions will impact automated decisional systems. Article 22 gives a person a qualified right ‘not to be subject to a decision based solely on automated processing, including profiling, which produces legal effects concerning him or her or similarly significantly affects him or her’. Article 25 imposes a duty on controllers of personal data to implement technical and organizational measures so that the processing of the data will meet the Regulation’s requirements and otherwise ensure protection of the data subject’s rights. Both sets of rules are aimed squarely at subjecting automated decisional systems to greater accountability. The chapter argues that the rules suffer from significant weaknesses that are likely to hamper their ability to meet this aim.
A Brief Argument for the Overwhelming Importance of Shaping the Far Future
Authors: Beckstead Nick 
Published: October 2019

Abstract
In this chapter, Nick Beckstead argues that the best available interventions gain most of their expected value via the effects that they have on the long-run future, rather than via their more immediate effects. Because of the vastness of humanity’s possible future, this line of argument tends to favour actions that reduce risks of premature extinction, and actions that increase probabilities of other significantly beneficial “trajectory changes” to the course of humanity’s long-run future, even where the change in probabilities that we are able to bring about is very small.
Effective Altruism, Global Poverty, and Systemic Change
Authors: Gabriel Iason , McElwee Brian 
Published: October 2019

Abstract
In this chapter, Iason Gabriel and Brian McElwee examine the status of interventions aimed at bringing about large-scale systemic change. According to Gabriel and McElwee, in the domain of global poverty, (i) philanthropic interventions favoured by effective altruists tend to take the form of “low-value/high-confidence” narrowly focused practical interventions, but (ii) it is quite likely that there are “medium-value/medium-confidence” interventions tackling global poverty via systemic change that are ex ante better. In other contexts, effective altruism definitely does take seriously “high-value/low-confidence” interventions (namely, efforts to mitigate extinction risk), so there does not seem to be any simple bias towards high confidence at work here. The explanation Gabriel and McElwee suggest lies in an understandable yet still misguided preference for political neutrality within the effective altruism movement.
Measuring the CosmosParallax and the Transit of Venus
Authors: Spence John C. H. 
Published: October 2019

Abstract
A review of the methods the ancient Greeks used to measure the distances between the Earth and the Sun, and the Earth and the Moon, and the size of the Earth, and the lives of the personalities involved. The remarkable Jeremiah Horrocks. He was the first observer in 1639 of a transit of Venus to use it to deduce the distance from the Earth to the Sun, using the method of parallax, which is simply explained. The story of Halley’s proposal for the first international collaboration to observe a transit in 1671 and of his life. The adventures and misadventures of those who set out around the globe for this and the later transit observations of 1769, including Captain Cook in Tahiti. These produced the first reasonably accurate dimensions for our solar system.