bluuebunny/crossref_metadata_2025 huggingface dataset:
Prologue
Authors: Young Dannagal Goldthwaite
Published: October 2019

When liberal satirist Samantha Bee and conservative outrage host Glenn Beck appeared on Bee’s program in 2016 to discuss the ways their political rhetoric might be similar, it provided an opportunity to think about how some the functions and outcomes of the genres of liberal satire and conservative opinion (outrage) may overlap. This chapter describes this conversation between the two show hosts and uses it as a springboard for the book. The chapter introduces the two questions at the heart of this book: Why is political satire so liberal? Why do liberals seem unsuccessful at talk radio and outrage programming? The chapter also chronicles how and why the author came to ask these questions and summarizes the remaining chapters of the book, providing a roadmap for readers.
Voice Change in Pop Culture
Authors: Sweet Bridget
Published: October 2019

The chapter discusses the way popular understanding and misunderstanding of voice change is largely perpetuated by mainstream media. Portrayals of voice change distributed via music, television, and movies have contributed to a simulacrum of adolescent voice change, a situated reality not based in fact but accepted in pop culture. The generally embraced perception of voice change is that it is a time of humiliation, anxiety, turmoil, and dread. Voice change is not always pleasant, but students and music educators perceive and approach the experience with such angst and trepidation well before it begins that is rarely given the opportunity to be something positive or exciting. The chapter examines and distills episodes of The Brady Bunch, The Wonder Years, and The Goldbergs, popular television series that spanned a period of more than 40 years, each with an episode focused on the adolescent changing voice.
Exploring Eminent Perspectives
Authors: Sweet Bridget
Published: October 2019

To better understand the larger scope of voice classification systems and other foundational ideas in choral music education, the chapter explores some of the most eminent works in the profession by Emil Behnke and Lennox Browne, Duncan McKenzie, Irvin Cooper and Karl O. Kuersteiner, Richard Luchsinger and Godfrey E. Arnold, Frederick J. Swanson, John Cooksey, and Lynne Gackle. Such examination shows how cornerstone ideas have been fostered and how varying perspectives influenced the creation of new frameworks for working with changing voices. Also revealed is the deep dedication to certain beliefs about adolescent voices over the years. The chapter challenges choral educators to consider voice classification systems more as guidelines for helping teachers assist singers through voice change than as steadfast stages through which all voices pass. The systems are best utilized as supporting tools to help guide the process of voice change rather than label adolescent singers’ changing voices.
Introduction
Authors: Talisse Robert B.
Published: October 2019

This introductory chapter introduces the central theme of the book: our social spaces have become overrun with appeals to our political identities and allegiances, thereby crowding out other bases for cooperative social interaction, such as the time-honored American custom of Thanksgiving dinner. This has, in turn, rendered our politics all the more divisive and polarizing. In making democratic politics the framework that organizes all that we do together, we overdo democracy. And overdoing democracy undermines democracy. If we seek to improve our democratic politics, we must devise things to do together that are in no way political. The book contends that democracy is worth doing well because there are other things worth pursuing that can be pursued best in a well-functioning democracy.
The Calculation of Women’s Inclusion
Authors: Valdini Melody E.
Published: October 2019

Chapter 2 offers a new approach to understanding the conditions under which women are included in the political sphere. It presents a conceptual framework of the competing individual and partisan motivations that male rational opportunists face when making candidate selection decisions, referred to as the “inclusion calculation.” This is a calculation of the likely costs and benefits of women’s increased presence in the party under various institutional, political, and social conditions. In addition, it argues that under conditions of declining party or government legitimacy, citizens are not only updating their beliefs on women’s roles but are also temporarily changing their understanding of the ideal leader. This brings new value to the stereotypes traditionally associated with women which, as is explained, temporarily increases the value of women’s inclusion in the eyes of the elite.
The Strategic Use of Women Candidates in Post-Scandal Environments
Authors: Valdini Melody E.
Published: October 2019

Chapter 4 examines the inclusion calculations of party elites in the aftermath of a massive corruption scandal. It argues that party elites have an incentive to strategically increase the presence of women candidates in such an environment in order to associate themselves and their party with stereotypical feminine traits, but this incentive is not always enough to trigger inclusion. Case study analyses of Spain, Portugal, and Ireland are presented, with evidence that political parties in Spain and Portugal recruit and run more women candidates in high-profile positions after a massive scandal breaks but, due to the high “costs” of running women in the institutional environment of Ireland, this effect is not found there. Finally, the chapter presents a large-N regression analysis of legislative electoral results over a period of 20 years, with evidence that more women win legislative seats in the aftermath of a corruption scandal.
Shaken into Seeing and Hearing
Authors: Dohoney Ryan
Published: October 2019

Chapter 3 chronicles the intersection of Feldman’s and Dominique de Menil’s spiritual aesthetics. It begins by reconstructing the conditions of their first meeting: the New York City Ballet’s 1966 performance of Merce Cunningham’s Summerspace, re-choreographed for George Balanchine. It goes on to document Feldman and de Menil’s 1967 collaboration on the gallery show Six Painters at the University of St. Thomas. Through her family’s patronage, as well as Dominique’s presence as self-installed head of the art department, the University became a major presenting organization offering avant-garde cultural events in the city. Six Painters featured paintings by Piet Mondrian, Mark Rothko, Jackson Pollock, Willem de Kooning, Philip Guston, and Franz Kline. Feldman was also given a residency at the university in 1967, where he lectured on abstract expressionism and his own musical aesthetics as well as presented a concert of his music.
Amazon Can Read Your Mind
Authors: Natale Simone
Published: October 2019

The chapter interrogates how notions and concepts of occult and supernatural meanings are applied to describing and discussing digital media, focusing on the case of applications of notions of mindreading to computer algorithms. It examines the concept of mindreading as a keyword whose definition and meaning wavered between different forms of knowledge, from parapsychology to cybernetics and computer science. Popularized by parapsychology, the concept of mindreading has been employed to describe algorithms that recognize feelings and mental states of humans, or that anticipate the behavior of users and consumers, providing them with tailored offers and services. Excavating the media archaeology of “mindreading computers” helps provides a viewpoint into the ways notions and narratives related to the supernatural enter the cultural imaginary of digital media and technologies.
I Play, Therefore I Believe
Authors: Cassone Vincenzo Idone , Thibault Mattia
Published: October 2019

Religious topics are increasingly common in video games, frequently addressing issues such as spirituality and transcendence. Yet this is only the surface of more complex phenomena, deeply tied to religious experience itself in interactive digital simulations. The aim of the chapter is to highlight the implications of the ties between religion and belief dynamics in video games. First, it focuses on different kinds of player–game belief relationships, which take the forms of agreements (symmetrical) and self-givings (asymmetrical). Then, it addresses the process of institution of belief: the necessity for players not only to pretend to believe in the digital world, but to experience the act of believing itself while playing. Lastly, it presents a series of case studies (Planescape Torment, Nier: Automata, The Talos Principle, and The Stanley Parable) to show different peculiar dynamics involved in the relationships between religio, belief, and the ludic experience.
Where Soul Meets Technology
Authors: Pasulka D. W. , Metcalfe David
Published: October 2019

The chapter examines how the visionary dream of connecting people’s minds wavered between religious cosmologies, media theories, and researches into human–computer interaction. It focuses on a series of historical case studies: the writings of Ramon Llull, a fourteenth-century Catholic lay missionary from Spain; the concept of noosphere as described by the Jesuit anthropologist Pierre Teilhard de Chardin; Marshall McLuhan’s characterization of media as “extensions of man”; and research on telepathy or clairvoyance conducted at the Stanford Research Institute, a center where pioneering research into interactive computing led to the invention of the computer mouse in 1968. The authors argue that the beliefs, expressions, discourse, and spiritual framework that supported the development of digital media and the internet have been and still are largely religious, mythological, and enchanted.
Virtuous Agents
Authors: Woodard Christopher
Published: October 2019

Chapter 3 claimed that reasons and rightness are non-perspectival. This means that they depend on facts about the whole future, and raises a puzzle about how to characterize virtuous agents. Agents cannot know which of their options is right, or any but a small proportion of their reasons for action. This chapter argues that we can account for the features of virtuous agency without having to introduce parallel perspectival concepts of reasons and rightness. It begins by characterizing good decision procedures as those which tend to result in right action. Despite our ‘cluelessness’ about token actions, we can form reasonable beliefs about the total consequences of decision procedures. It then presents a novel account of praiseworthiness, using the idea of beneficial practices of praising. Finally, it claims that virtues are traits that both tend to cause right action and are praiseworthy. Virtues are not just good, but also admirable.
John Ireland and the Transformation of Scotist Theology
Authors: Burton Simon J. G.
Published: October 2019

John Ireland was the most distinguished Scottish theologian of the fifteenth century. Significantly, his own theology was deeply impacted by that of John Duns Scotus, whom he was proud to acknowledge a fellow countryman. This chapter discusses Ireland’s theology, focusing on his transformation of key Scotist motifs. It reveals Ireland’s profound debt to a Scotistic pattern of perfect-being theology, both directly and indirectly through the mediation of Ramon de Sabunde, the controversial fifteenth-century member of the school of Ramon Lull. It also positions his complex discussion of grace and free will as a pastoral via media between an Augustinian-Scotist and Ockhamist account of predestination. Overall, Ireland’s distinctive theological synthesis represents a creative response to some of the key debates of late medieval theology, and one whose influence was felt on the next generation of Scottish theologians.
Political and Ecclesial Theology in the Sixteenth Century
Authors: Elliott Mark W.
Published: October 2019

This chapter reviews the humanist supplement to scholastic theology, concerned more with devotional and ethical matters than the metaphysics of doctrine, yet the former would include a keen defence of the orthodox Eucharistic doctrine as well as conciliar theology which allowed for a political theology that was at once quasi-democratic while respecting order and office. Although a scholastic by method, John Mair shows this training to be used for questions of devotion and authority. Coming from very different backgrounds, Quintin Kennedy and Ninian Winzet offer defence of the Old Faith that is detailed and coherent. The civil ‘republicanism’ of Buchanan and Knox was the occasion of a Reforming Catholicism remaining true to the old faith in these key areas.
The Theology of the Westminster Confession of Faith in its Context
Authors: Gamble Whitney G.
Published: October 2019

In 1643, England’s Long Parliament called theologians from every county of England and Wales to Westminster Abbey to revise the Thirty-Nine Articles, the foundational documents of the Church of England. As the divines commenced their revisions, they encountered a theological movement which they believed represented the greatest threat to the cause of Reformation. Somewhat surprisingly, it was not Roman Catholicism or even Arminianism; it was antinomianism, a new and powerfully growing sect. Concern to combat antinomian tenets drove the assembly into complex theological debates for the first six weeks of its meetings. Parliament’s signing of the Solemn League and Covenant, however, brought an end to the assembly’s revisions. The Covenant instigated the writing of a statement of faith that would function as the confession for a theologically united Church of England, Scotland, and Wales. To supervise the execution of this plan, the General Assembly of the Church of Scotland sent commissioners to the assembly to serve as consultative members. Although written in London primarily by English theologians, the Westminster Confession of Faith would be repudiated by Restoration officials. Its true impact came through its acceptance and implementation by the Church of Scotland.
The Calvinist Paradox in Eighteenth- and Nineteenth-Century Literature
Authors: Jack Alison M.
Published: October 2019

The relationship between theology and literature in Scotland from the mid eighteenth to the late nineteenth century is explored in this chapter through a consideration of the writing of Robert Burns, Susan Ferrier, Catherine Sinclair, and Margaret Oliphant. All are authors whose work has undergone re-appraisal in terms of its status and the way it reflects religious themes from a Reformed perspective. Four aspects of theological interest are covered: the significance of denominational allegiance; the tension between the influence of the family home and the ministry of the church on religious belief; the role of eschatology in literature; and the appropriateness of literature as a vehicle for theological instruction and debate. The writers under discussion offer contrasting, critical, yet committed insights into these areas which contribute to our understanding of contemporary theological debates.
Episcopalian Theology 1689–c.1900
Authors: Strong Rowan
Published: October 2019

The chapter examines the principal developments in the emergence of the Scottish Episcopal Church from the end of the Stuart monarchy in 1689, when Episcopalians began to be ejected as non-jurors from the Church of Scotland to the end of the nineteenth century. It concentrates on those aspects of theology which particularly marked out these Scots as Episcopalians, especially in liturgy, the Eucharist and sacraments, episcopacy, and Jacobitism. While reviewing the development of a separate ecclesiastical and theological identity in these two centuries, the chapter also explores some of the internal theological differences between Episcopalians. External theological influences and connections from England over this period, principally from High Church, Oxford Movement Anglicanism, and Evangelicalism, are also examined.
Extra-Terrestrials and the Heavens in Nineteenth-Century Theology
Authors: Kidd Colin
Published: October 2019

The discoveries of late eighteenth-century astronomy bequeathed certain theological problems to nineteenth-century theologians, especially in Scotland where the Kirk’s ministers were exposed in their arts training to natural science. If other planets—as seemed likely—were inhabited, then were their populations also fallen and, if so, redeemed by Christ’s atonement on earth? Or were other divine arrangements necessary? Astronomical and soteriological questions were closely intertwined throughout the century. Scots physicists were also at the cutting edge of the new science of energy, which had implications for Christian metaphysics, including the doctrine of the afterlife. In general, however, the findings of physics and astronomy were accommodated within the existing parameters of theology. The interconnection of theology and astronomy would survive as a trope of twentieth-century Scottish literature.
Introduction
Authors: Shlomo Agon Sivan
Published: October 2019

The introductory chapter begins with a review of the literature on the effectiveness of international courts, with a focus on the World Trade Organization (WTO) Dispute Settlement System (DSS). It then sets out the book’s main objective, which is to offer a multidimensional approach for analysing the effectiveness of the WTO DSS, a goal-based approach that defines DSS effectiveness as the extent to which this adjudicative system attains the goals set for it by the WTO and its Member states. Such an approach not only transcends classic compliance-centred effectiveness models by taking into account the manifold goals entrusted to the DSS, but also enables revelation of the real-life intricacies underlying the DSS’s operation and, consequently, its effectiveness, as these emerge from the multiple, conflicting, and shifting nature of its objectives. After formulating the book’s research agenda and objectives, the chapter provides an overview of the book’s four parts and explains its methodological framework.
Reconceptualizing Judicial Effectiveness at the WTO
Authors: Shlomo Agon Sivan
Published: October 2019

Drawing on the rich social science literature on organizational effectiveness, this chapter puts forth the theoretical and methodological foundations of the WTO Dispute Settlement System (DSS) goal-based effectiveness framework. After discussing the main approaches developed in the social sciences to defining organizational effectiveness, the chapter explains the reasons for selecting the goal-based approach to serve as the basis for the study into the effectiveness of the WTO DSS. The chapter then reviews the central concepts associated with this approach and their application to the world of WTO adjudication, while focusing on organizational goals, goal multiplicity, goal conflict, and goal shifting. Finally, the chapter discusses several methodological determinations that should be made before applying the proposed WTO DSS goal-based effectiveness framework. These include the selection of the goal setters to inform the DSS’s effectiveness analysis, the choice of performance indicators, and the determination of the time frame in which effectiveness is to be measured.
The Agency of Children and the Study of Religion
Authors: Strhan Anna
Published: October 2019

What does it mean to take children’s agency seriously in the sociology of religion? This chapter reviews dominant approaches to the study of childhood and religion and assesses the underlying assumptions about the meanings of childhood, agency, society, and religion they index. It situates these approaches in relation to two different strands taken to children’s agency in wider childhood studies. It then examines how we can see two different understandings of children’s agency in play in conservative and charismatic evangelicalism through discussing two different national evangelical events focused on childhood. It argues that these events empirically demonstrate the importance of attending to childhood in the study of religion and suggests a way of understanding children’s agency in relation to religion as a fluid, dynamic convergence of different elements, which affords children more or less capacity to act as agents and shape the social and religious worlds they inhabit.
Building an Academy
Authors: Strhan Anna
Published: October 2019

Chapter 4 focuses on the relations between Riverside Church (open evangelical) and the local schools it was involved in running, situating this in relation to broader debates about faith schools, neoliberalism, and social class. The chapter examines how members of Riverside Church described the moral and religious significance of their engagement with these schools, drawing on a romanticized narrative of evangelicals’ historic work with the children of the urban poor. The chapter demonstrates how these schools are of central moral significance for the church’s aspiration to affect both the local area and wider British society, and explores how the ways in which those at Riverside talk about the work of these schools at times enact moralizing power relations that are simultaneously held in tension with the church’s inclusivist aspirations and self-understanding.
Marking Times and Transitions
Authors: Strhan Anna
Published: October 2019

We are living through times in which traditional religious rites of passage are in question in Western societies. Chapter 6 focuses on what rites of passage in relation to childhood looked like at each of the three evangelical churches explored in this book and examines how particular moments of transition were being constructed and marked in children’s lives. The chapter explores the different ways in which those at St John’s (conservative evangelical), St George’s (charismatic evangelical), and Riverside (open evangelical) engaged with traditional rites of passage such as infant baptism and how they often demonstrated ritual creativity in their marking of other moments of transition, such as the move from primary to secondary school. It also examines how these rites reveal different understandings of children’s agency.
Teleological Groundings of Rights and Duties
Authors: Cruft Rowan
Published: October 2019

Chapter 7 develops a teleological account of the grounding of duties and rights. It argues that a ‘natural’ right—that is, a duty that is owed to someone independently of anyone’s recognizing or deciding that it is owed to them (i.e. a duty that bears Chapter 4’s ‘Addressive’ requirements independently of anyone recognizing this or creating it)—must be a duty grounded wholly or predominantly on the right-holder’s own good. By contrast, legal, conventional, and promissory rights need not be grounded or justified by the right-holder’s good. Many alternative accounts of the grounding of ‘natural’ rights—from e.g. Darwall, Kamm, Nagel, Ripstein, Scanlon—are considered and rejected.
The ‘Human’ in Human Rights and the Law
Authors: Cruft Rowan
Published: October 2019

Chapter 9 examines what differing conceptions of ‘the human good’ underpinning pre-legal rights imply for such rights’ relation to positive law. Three models are compared: a varied, specific model on which each party’s good might be different from anyone else’s, a shared specific model on which certain things (e.g. education, sustenance, freedom) are good for each and every human, and a generic model on which the good of ‘the generic human’ grounds human rights. Problems for each approach are outlined, as are their differing implications for the relation between pre-legal ‘natural’ human rights and human rights law, criminal law, and other branches of law. A central argument defends the view that the socio-economic rights recognized by human rights law institutionalize pre-legal ‘natural’ rights borne by individuals against other individuals, their state and—most crucially for the author’s argument—humanity at large. The contrary views of Buchanan and O’Neill are criticized.
Thoth
Authors: Furani Khaled
Published: October 2019

Heuristically evoking Thoth, an ancient Egyptian god of wisdom, architecture, crafts, and “science,” this chapter explores the ways anthropologists work to immure their discipline from its banished other, theology. Asking readers to imagine a proverbial “geodesic dome” housing anthropodom—anthropology constructed as a secular science—it discusses five types of “panes” that anthropologists “lay” in constructing their “home.” Derived from anthropology’s biographical and disciplinary registers, these panes safeguard anthropology from the threatening “theosphere” in order to secure its secular reason and its membership in the modern university. Pitting itself against theology grants anthropology a certain unity and identity, defining “what it is” by claiming “what it is not.”
Conclusions
Authors: Furani Khaled
Published: October 2019

Reviewing the ways this book examines anthropology’s fraught and contradictory relationship with theology and the potential the latter offers for revitalizing the former, this chapter extends this book’s exercise of critique. Examining anthropology’s fealty to secular sovereign reason, and by extension the sovereign state, it questions the discipline’s fear of revelation. Should anthropology reintegrate revelation, not only within its catalogue of topics for examination, but with its very own reason, it could attune to reason’s fragility, acquire an alertness to integrative capacities disavowed by the modern university, and more fully consider infinite multiplicity. In reconstructing paths back to “Athens” and “Jerusalem,” as well as beyond, we could wonder not only, “what is different?” but also “what is?”
Winning, Losing, and Playing the Game
Authors: King Peter
Published: October 2019

This chapter argues for two independent but related theses: that it is an essential feature of games that there be winners and losers; and that winning and losing should be replaced with the more general notions of success and failure in a game. The first thesis has the consequence that many activities Suits countenances as games are not games but mere pastimes, easily confused with games since they can readily be turned into games. The second thesis tries to incorporate winning and losing into Suits’s account, arguing that the broader notions of success and failure are what his account needs—someone is still playing a game even if she tries to achieve the silver medal rather than the gold—which has the additional benefit of showing how the abstract analysis of games in terms of success and failure is linked to the strategies players adopt in playing the game.
Division and Classification
Authors: Crivelli Paolo
Published: October 2019

The Philebus presents some arguments for the paradoxical claim that the many are one and the one many. The most serious of these arguments concerns the multiple spatial locations of an attribute. For instance, since the attribute man belongs to many men, it is in them, and it is therefore both one and many (for it is in them either by having different parts of itself contained in them or by being wholly contained in each of them). Plato maintains that this argument goes astray. He appeals to division and collection, the procedures linked with definition and classification. He probably has in mind a mereological model of particulars, whereby perceptible particulars are mixtures whose ingredients are the attributes which they partake of. Among the ingredients of a perceptible particular there are properties that specify its spatial location, so the problem of the multiple spatial location of an attribute evaporates.
Why Pleasure and Reason are not the Good
Authors: Meyer Susan Sauvé
Published: October 2019

When Socrates argues early in the Philebus (20b–23b) that (1) neither pleasure nor knowledge is “the good,” the issue is not whether pleasure or knowledge is the only good thing but rather whether either is the unconditional source of value in a life (a much stronger thesis than hedonism). Nor is his conclusion here merely provisional, for the rest of the dialogue turns to address two further questions: (2) whether pleasure or knowledge is the efficient cause of the good life, and (3) which of the two is more akin to “the good.” His argument for (1) invokes three features of “the good” (sufficiency, completeness, and motivation) that Aristotle will later deploy, but differently.
The Fourfold Division of Beings
Authors: Gill Mary Louise
Published: October 2019

The fourfold division in Plato’s Philebus develops machinery to decide the contest between pleasure and reason for second place after the mixture in the debate about the good life. The machinery consists of the limit, the unlimited, the mixture of limit and unlimited, and cause of the mixture. Plato’s Socrates collects instances of the unlimited and mixture to determine their unified nature and marks off the cause from the other three kinds and argues for its priority. We gain understanding of the limit by considering its operation in relation to the other three kinds. The limit is responsible for external and internal boundaries in an unlimited, bringing definiteness either by marking something off from things outside it or by providing internal structure. Chapter 5 argues that one key function of the limit is omitted in the fourfold division: guaranteeing the goodness of a mixture.
Putting the “Stroppies” to Work
Authors: Pearson Giles
Published: October 2019

Chapter 9 offers a detailed analysis of Philebus 42c–47d. Here, after first discussing a neutral state between pleasure and pain, Socrates introduces some ‘stroppy’ characters (duschereis) who are said to bear witness to the fact that there are some states that only seem to be pleasures, but aren’t so in reality, and others that have the appearance of enormous size, but which in truth are commingled with pain. This chapter (inter alia) sketches Socrates’ argument concerning the neutral state, explores the view that he wishes to attribute to the ‘Stroppies,’ explains how he employs their arguments and methodology, provides a reconstruction of an important missing part of their argument concerning the view that pleasure doesn’t really exist, explains how Socrates’ own account contrasts with that of the Stroppies, and explores the notions of false pleasure/pain in play in this part of the Philebus.
Differing Understandings of Informed Consent Held by Research Institutions, People with Intellectual Disability, and Guardians
Authors: Howell Britteny M. , Shogren Karrie A.
Published: October 2019

Increasing participation of people with intellectual disability (ID) is necessary for inclusive, ethical research that reduces persistent disparities in representation. However, many adults with ID have guardians, who must consent to research involvement. Researchers have found that guardians are less likely to provide consent than the person with ID, often resulting in lower participation. Institutional Review Board (IRB) members also have been found to hold very cautious views regarding research participation compared to the views of people with ID or their guardians. This chapter reviews issues that emerge because of differing views of research participation held by IRB members, guardians, and people with ID that may unnecessarily limit the participation of people with ID in research. The research literature on these barriers is summarized along with the authors’ own experiences with alternative participatory strategies that have the potential to increase both self-determination and participation in research for people with ID.
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

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

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

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

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

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

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

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

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

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.
Encountering data
Authors: Edge M. D.
Published: October 2019

Statistics is concerned with using data to learn about the world. In this book, concepts for reasoning from data are developed using a combination of math and simulation. Using a running example, we will consider probability theory, statistical estimation, and statistical inference. Estimation and inference will be considered from three different perspectives.
Parametric estimation and inference
Authors: Edge M. D.
Published: October 2019

If 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

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.
Occupancy Rights
Authors: Stilz Anna
Published: October 2019

This chapter outlines the book’s account of foundational title to land, explaining the basis on which certain people have a special claim to live in a specific area, including the right to set up a state that governs that space. It argues that foundational title is a bundle of individual occupancy rights held by the state’s inhabitants. Occupancy rights protect our plan-based interests in the locational continuity of our central life commitments, as well as our more generalized control interest in being the agent in charge of revising and reshaping these commitments. Occupancy confers at least some of the incidents associated with property, including rights to secure access to, use, and control of a particular area. This raises important questions about the kind of right occupancy is meant to be, which are examined in Chapter 3.
Challenges to Occupancy
Authors: Stilz Anna
Published: October 2019

This chapter considers two important challenges to occupancy rights. First, how might we legitimately move from a scenario where the earth’s spaces are freely available to all to one where some people hold special rights over certain areas? Is this—as some cosmopolitans argue—simply the usurpation of resources that rightfully should remain open to everyone? Second, most states have acquired (parts of) their territories through invasion, displacement, conquest, and other past injustices. Can present-day occupants claim foundational title to the spaces they now inhabit? Even if the earth is owned in common, I argue that there is nothing wrong with people asserting claims to specific areas of it, so long as they respect the fair-use proviso. This chapter also argues that present-day occupancy rights do not depend on a historically “clean” chain of title. Since occupancy rights can often be established in the aftermath of historic dispossession, an unjust past does not necessarily invalidate present-day occupancy.
Legitimacy and Self-Determination
Authors: Stilz Anna
Published: October 2019

This chapter turns to the question of how a state might acquire legitimate territorial jurisdiction over a population of rightful occupants. What gives a state the right to rule a specific territory and group of people? I hold that a state has a right to rule a territory and population if and only if it: (i) protects certain essential private rights for all its subjects and respects these rights in outsiders and (ii) it reflects the shared will of its population as to how—and by whom—they should be ruled. To gain the right to rule, a state must serve the second and third core values that underpin the states system: basic justice and collective self-determination. The chapter offers a specific account of the interest in collective self-determination, which it calls “the political autonomy theory.”
Axis Internationalism
Authors: Brydan David
Published: October 2019

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

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.