The UK’s 100,000 Genomes Project has the aim of sequencing 100,000 genomes from UK National Health Service (NHS) patients while concomitantly transforming clinical care such that whole genome sequencing becomes routine clinical practice in the UK. Policymakers claim that the project will revolutionize NHS care. We wished to explore the 100,000 Genomes Project, and in particular, the extent to which policymaker claims have helped or hindered the work of those associated with Genomics England – the company established by the Department (...) of Health to deliver the project. We interviewed 20 individuals linked to, or working for Genomics England. Interviewees had double-edged views about the context within which they were working. On the one hand, policymakers’ expectations attached to the venture were considered vacuous “genohype”; on the other hand, they were considered the impetus needed for those trying to advance genomic research into clinical practice. Findings should be considered for future genomes projects. (shrink)

Os discursos da Biblioteconomia brasileira são objeto de estudo desta pesquisa, que se concentrou nos artigos publicados durante a década de 1980 na Revista de Biblioteconomia de Brasília. Essa revista, cujo primeiro número foi publicado em 1973, encerrou suas atividades em 2001 e teve como foco as áreas de Biblioteconomia, Ciência da Informação, Arquivologia e afins. Com a intenção de discutir sobre dois conceitos centrais da Biblioteconomia - o de biblioteca e o de bibliotecário - analisamos as produções que versavam (...) sobre tais categorias de análise. A pesquisa é, então, considerada exploratória, de cunho bibliográfico, cujo método empregado foi o da análise de conteúdo. Essa década foi marcada pela importância da informação e da tecnologia como fatores responsáveis pelo desenvolvimento social e econômico do país. A biblioteca, nesse contexto de uma sociedade da informação, é marcada pela discussão da automação de seus serviços e produtos. O bibliotecário, visto como um profissional da informação, também tem um importante papel a desempenhar na sociedade, inclusive, o de estar ao lado dos mais vulneráveis. (shrink)

Since 1994, eleven ministerial public juridic persons have been established in Australia to take the education, health and community service ministries of the instigating religious institutes purposely into the future as ministries of the Catholic Church. Subsequently other ministries have been entrusted to established MPJPs, including some diocesan and parish health and aged care services. In the period from 2012 to 2016, representatives of the MPJPs explored means of fostering collaboration between the respective entities, leading to the founding of the (...) Association of Ministerial PJPs Ltd in May 2016. These are historic developments for the Australian Church in relation to lay ecclesial leadership, and offer a canonically recognised means of expanding lay women and men's participation in church governance. Table 1, in the pages that follow, summarises details of the Australian MPJPs. (shrink)

The Second Vatican Council promoted the calling of all the baptised to the mission of the church and highlighted the 'indispensable role' of the laity. The 1965 Decree on the Apostolate of Lay People stated: An indication of this manifold and pressing need is the unmistakable work being done today by the Holy Spirit in making the laity ever more conscious of their own responsibility and encouraging them to serve Christ and the Church in all circumstances.

This paper examines the consequences of a culture of “personal ethics” when using new methodologies, such as the use of social media sites as a source of data for research. Using SM research as an example, this paper explores the practices of a number of actors and researchers within the “Ethics Ecosystem” which as a network governs ethically responsible research behaviour. In the case of SM research, the ethical use of this data is currently in dispute, as even though it (...) is seemingly publically available, concerns relating to privacy, vulnerability, potential harm and consent blur the lines of responsible ethical research behaviour. The findings point to the dominance of a personal, bottom-up, researcher-led, ‘ethical barometer’ for making decisions regarding the permissibility of using SM data. We show that the use of different barometers by different researchers can lead to wide disparities in ethical practice - disparities which are compounded by the lack of firm guidelines for responsible practice of SM research. This has widespread consequences on the development of shared norms and understandings at all levels, and by all actors within the Ethics Ecosystem, and risks inconsistencies in their approaches to ethical decision-making. This paper argues that this governance of ethical behaviour by individual researchers perpetuates a negative cycle of academic practice that is dependent on subjective judgements by researchers themselves, rather than governed by more formalised academic institutions such as the research ethics committee and funding council guidelines. (shrink)

Picture books are an important source of new language, concepts, and lessons for young children. A large body of research has documented the nature of parent-child interactions during shared book reading. A new body of research has begun to investigate the features of picture books that support children's learning and transfer of that information to the real world. In this paper, we discuss how children's symbolic development, analogical reasoning, and reasoning about fantasy may constrain their ability to take away content (...) information from picture books. We then review the nascent body of findings that has focused on the impact of picture book features on children's learning and transfer of words and letters, science concepts, problem solutions, and morals from picture books. In each domain of learning we discuss how children's development may interact with book features to impact their learning. We conclude that children's ability to learn and transfer content from picture books can be disrupted by some book features and research should directly examine the interaction between children's developing abilities and book characteristics on children's learning. (shrink)

I develop an interpretation of Maurice Merleau-Ponty's concept of motor intentionality, one that emerges out of a reading of his presentation of a now classic case study in neuropathology—patient Johann Schneider—in Phenomenology of Perception. I begin with Merleau-Ponty's prescriptions for how we should use the pathological as a guide to the normal, a method I call triangulation. I then turn to his presentation of Schneider's unusual case. I argue that we should treat all of Schneider's behaviors as pathological, not only (...) his abstract movements, as is commonly acknowledged in the secondary literature, but also crucially his concrete movements. Using these facts of Schneider's illness, I reconstruct a ‘fundamental function’ of consciousness, as Merleau-Ponty called it, in which there are two kinds of bodily agency: the power of the body to be solicited by a situation and the power of the body to project a situation. I propose that these powers became dissociated in Schneider's case, as evidenced by his abstract and concrete movements, while in the normal case, these powers comprise a dynamic unity, enacted as motor intentionality. I also discuss how my interpretation complements Merleau-Ponty's assertion that motor intentions exist between mind and matter. (shrink)

Patients are increasingly turning to medical crowdfunding as a way to cover their healthcare costs. In the case of Charlie Gard, an infant born with encephalomyopathic mitochondrial DNA depletion syndrome, crowdfunding was used to finance experimental nucleoside therapy. Although this treatment was not provided in the end, we will argue that the success of the Gard family’s crowdfunding campaign reveals a number of potential ethical concerns. First, this case shows that crowdfunding can change the way in which communal healthcare resources (...) are allocated. Second, within the UK’s National Health Service, healthcare is ostensibly not a market resource; thus, permitting crowdfunding introduces market norms that could commodify healthcare. Third, pressures inherent to receiving funds from external parties may threaten the ability of patients-cum-recipients to voluntarily consent to treatment. We conclude that while crowdfunding itself is not unethical, its use can have unforeseen consequences that may influence conceptions of healthcare and how it is delivered. (shrink)

While ethical and empirical interest in so-called secondary variants and incidental findings in clinical genetics contexts is growing, critical reflection on the ethical foundations of the various recommendations proposed is thus far largely lacking. We examine and critique the ethical justifications of the three most prominent disclosure positions: briefly, the clinical geneticist decides, a joint decision, and the patient decides. Subsequently, instead of immediately developing a new disclosure option, we explore relevant foundational ethical values and norms, drawing on the normative (...) and empirical ethical literature. Four ethical signposts are thereby developed to help guide disclosure discussions. These are: respectful sharing of the clinician’s expertise; transparent communication; epistemic modesty; and respect for the embedded nature of the patient. We conclude by considering the most common current disclosure positions in the light of the four ethical signposts. (shrink)

Digital phenotyping for mental health is an emerging trend which uses digital data, derived from mobile applications, wearable technologies and digital sensors, to measure, track and predict the mental health of an individual. Digital phenotyping for mental health is a growing, but as yet underexamined, field. As we will show, the rapid growth of digital phenotyping for mental health raises crucial questions about the values that underpin and are reinforced by this technology, as well as regarding to whom it may (...) become valuable. In this commentary, we explore these questions by focusing on the construction of value across two interrelated domains: user experience and epistemologies on the one hand, and issues of data and ownership on the other. In doing so, we demonstrate the need for a deeper ethical and epistemological engagement with the value assumptions that underpin the promise of digital phenotyping for mental health. (shrink)

BackgroundThe health sector aims to improve health outcomes and access to healthcare. At the same time, the sector relies on unsustainable environmental practices that are increasingly recognised to be catastrophic threats to human health and health inequities. As such, a moral imperative exists for the sector to address these practices. While strides are currently underway to mitigate the environmental impacts of healthcare, less is known about how health researchers are addressing these issues, if at all.MethodsThis paper uses an interview methodology (...) to explore the attitudes of UK health researchers using data-intensive methodologies about the adverse environmental impacts of their practices, and how they view the importance of these considerations within wider health goals.ResultsInterviews with 26 researchers showed that participants wanted to address the environmental and related health harms associated with their research and they reflected on how they could do so in alignment with their own research goals. However, when tensions emerged, their own research was prioritised. This was related to their own desires as researchers and driven by the broader socio-political context of their research endeavours.ConclusionTo help mitigate the environmental and health harms associated with data-intensive health research, the socio-political context of research culture must be addressed. (shrink)

The study of literary texts appears at the moment to stand at a decisive juncture. Trends in critical thinking over the last decades have questioned the possibility of recovering a text's historical meaning. At the same time, there is a newly insistent plea for a return to “history” in the interpretation of literature. Before a rapprochement can occur, however, we need to have a clearer understanding of how both historians and critics understand “history” and of the ways in which postmodernist (...) thought positions history and the role of the historian with respect to issues of literary interpretation at the forefront of contemporary critical debate. (shrink)

In April 2020, close to the start of the first U.K. COVID-19 lockdown, the U.K. government announced the development of a COVID-19 contact tracing app, which was later trialled on the U.K. island, the Isle of Wight, in May/June 2020. United Kingdom surveys found general support for the development of such an app, which seemed strongly influenced by public trust. Institutions developing the app were called upon to fulfil the commitment to public trust by acting with trustworthiness. Such calls presuppose (...) that public trust associated with the app can emerge if the conditions for trustworthiness are met and that public trust is simplistic, i.e., linearly the sum of each member of the publics’ individual – U.K. government trust relationship. Drawing on a synthesis of the trust literature and fifteen interviews with members of the public trialling the app on the Isle of Wight, this paper aims to explore what trust mechanisms and relationships are at play when thinking about public trust in the context of the U.K. COVID-19 app. We argue that public trust is a complex social phenomenon and not linearly correlated with institutional trustworthiness. As such, attention needs to widen from calls for trustworthy infrastructures as a way to build public trust, to a deeper understanding of those doing the trusting; in particular, what or whom do people place their trust in when considering whether using the app and why. An understanding of this will help when trying to secure public trust during the implementation of necessary public health measures. (shrink)

In this article, I link the empirical hypothesis that neural representations of sensory stimulation near the body involve a unique motor component to the idea that the perceptual field is structured by skillful bodily activity. The neurophenomenological view that emerges is illuminating in its own right, though it may also have practical consequences. I argue that recent experiments attempting to alter the scope of these near space sensorimotor representations are actually equivocal in what they show. I propose resolving this ambiguity (...) by treating these representations as responsive to the development or degeneration of know-how—which can be isolated as an appropriate object for scientific investigation. (shrink)

Gilbert Ryle famously wrote that practical knowledge (knowing how) is distinct from propositional knowledge (knowing that). This claim continues to have broad philosophical appeal, and yet there are many unsettled questions surrounding Ryle’s basic proposal. In this article, I return to his original work in order to perform some intellectual archeology. I offer an interpretation of Ryle’s concept of action that I call ‘adverbialism’. Actions are constituted by bodily behaviours performed in a certain mode, style or manner. I present various (...) challenges to adverbialism – scenarios in which it seems we publicly behave one way, but privately feel another. And I offer a response – Ryle’s stated practice of re-describing those situations in ways that pose no threat to his adverbialism. I also present an interpretation of practical knowledge in Ryle’s work. Knowing how is a special kind of action, undertaken only when we progressively self-modify our behaviours in the presence of new challenges or opportunities. (shrink)

The moral standing of involuntary sterilization has long been subject to debate but has only recently been looked upon with disfavor. When sterilization of a mentally handicapped minor is entertained, issues of eugenics, medical ethics, and legal precedent specially arise. Ethics consultants and ethics committees have been asked to consider such cases.

This paper assesses arguments that paying for housework compromises the moral integrity of either the buyer or seller or both. I find that none provides adequate justification for avoiding paying for housework. Instead, I argue that the vigorous pursuit of justice for women workers will best remedy injustice in service sector occupations, including paid housework.

Investigations of iconicity in language, whereby interactants coordinate meaningful bodily actions to create resemblances, are prevalent across the human communication sciences. However, when it comes to analysing and comparing iconicity across different interactions and modes of communication, it is not always clear we are looking at the same thing. For example, tokens of spoken ideophones and manual depicting actions may both be analysed as iconic forms. Yet spoken ideophones may signal depictive and descriptive qualities via speech, while manual actions may (...) signal depictive, descriptive, and indexical qualities via the shape, movement, and placement of the hands in space. Furthermore, each may co-occur with other semiotics articulated with the face, hands, and body within composite utterances. The paradigm of iconicity as a single property is too broad and coarse for comparative semiotics, as important details necessary for understanding the range of human communicative potentialities may be masked. Here, we draw on semiotic approaches to language and communication, including the model of language as signalled via describing, indicating and/or depicting and the notion of non-referential indexicality, to illustrate the multidimensionality of iconicity in co-present interactions. This builds on our earlier proposal for analysing how different methods of semiotic signalling are combined in multimodal language use. We discuss some implications for the language and communication sciences and explain how this approach may inform a theory of biosemiotics. (shrink)

In their article, de Groot et al respond to a call to bring investigative genetic genealogy i to the bioethical debate.1 They explore the extent to which the ethical approach used in the medical clinical genetics context can be helpful for conceptualising the ethical issues associated with IGG. They conclude that such an individual-based model, which revolves around notions of consent and privacy, has significant limitations in the IGG context. The authors call for a broader balancing of the benefits and (...) risks of IGG, and the need for collective democratic engagement. de Groot et al ’s paper is a welcome addition to the literature—not only because it is an interesting and important analysis in its own right, but also because it foregrounds the importance of bringing forensic genetic debate to the bioethical audience. While forensic genetics has become increasingly widespread in the criminal justice system, bioethicists have often shied away from engaging with the ethical issues these practices raise.ii Perhaps this relates to the narrowing of bioethics debate over the past half a century to focus primarily on health-related issues,iii or to the techno-legal normative separation of DNA analysis in these two sectors, or perhaps both. Either way, as our desire for an ever-increasing collection and analysis of genetic data continues—and as we have seen in the IGG context—the lines between health, forensics and recreational associated DNA analysis and use are set to become …. (shrink)

Sally Haslanger offers the following concept of “woman”: If one is perceived as being biologically female and, in that context, one is subordinated owing to the background ideology, then one “functions” as a woman (2012b, 235). An implication of this account is that if someone is not regarded by others as their self-identified gender, they do not function as that gender socially. Therefore, one objection to this ascriptive account of gender is that it wrongly undermines the gender identities of some (...) trans people. In this paper, I will argue that Haslanger’s definition can be defended against this objection and that her account inevitably aids in liberatory efforts not only for cisgender women, but for all sexual and gender minorities. While Katharine Jenkins’s dual account of gender aims to rectify this objection (2016, 407), I will point out two important problems with her argument: “the inclusion dilemma” and “the abolition problem.” Finally, I will argue that Haslanger’s account of gender is preferable to Jenkins’s because it outlines the reality of gender as an oppressive, hierarchical system whose categories ought to be dismantled. (shrink)

We review evidence of the psychological and social costs associated with punishing. We propose that these psychological and social costs should be considered (in addition to material costs) when searching for evidence of costly punishment.

In lieu of an abstract, here is a brief excerpt of the content:How Deafness May Emerge as a Disability as Social Interactions UnfoldGabrielle HodgeMy hearing loss ranges from moderate to profound in both ears. I use spoken English, written English and Auslan (Australian sign language) to communicate, and rely heavily on two hearing aids, speach reading skills and my vision to interact with other people. Here I demonstrate how my deafness tends to emerge as a disability through interactions with other (...) people within the health and wellbeing context of group yoga practice. I compare two experiences from practicing yoga in group classes (which involves physical interaction and requires attendance to non–spoken tasks), and use these experiences to explore what the label ‘disability’ does not capture, how this term reflects my lived experience of deafness, and what this might mean for health and wellbeing [End Page 193] professionals engaging with clients who experience types of deafness.All human interactions are uniquely and intersubjectively shaped by the actors, how they communicate, and what they are doing while interacting. In my case, if someone is simultaneously attending to some task while talking with me, this may mean that I cannot see their face and therefore cannot access their spoken utterances. During group conversations, others may overlap their spoken turns at a pace faster than I can visually track and therefore I cannot access the dynamic content of the group conversation. In these situations, my deafness may manifest as disability. This contrasts with interactions where I engage with other signers using Auslan, where my deafness does not manifest as disability at all. For me, deafness as disability tends to be an emergent characteristic of my interactions with other people, rather than a constant feature of all interactions, or all moments of a single interaction. It emerges most prominently through interactions with strangers, and less during interactions with social intimates. This characterisation contradicts the concept of disability as a fixed feature of an individual that impacts uniformly on all aspects of their experience.I regularly practice yoga and have done so for many years. I enjoy participating in classes with other students, as we jointly learn and develop practices that challenge and illuminate different aspects of our lives. “At the heart of all yogas lies the manipulation of visible, accessible means to reach invisible, intangible ends” (Givón 2005, p. 23). How one manipulates their visible, accessible means depends on one’s personal physiology, psychology and sociality. Over the years I have developed various strategies that enable me to participate in group practice and engage with other students and teachers without over–reliance on teachers or mediation from Auslan interpreters. I have mostly come to depend on observing how the teacher and other participants move (or even how shadows on the wall infer that they move) and interpreting their movements in context of the group practice.For example, by placing myself at the front or the middle of the class, I can observe the movements of others from several viewpoints in order to synchronise my own with theirs as the practice unfolds. Through experience, I can distinguish when these movements are intentional and when they may be accidental. By combining these strategies with one–on–one discussions with teachers before or after class, as well as doing my own research, I can subsequently learn about teachings that may be verbally expressed during classes and later match these with various teachers and practices over time. These strategies enable me to adapt to a situation where it is impossible to experience consistent face–to–face interaction and where it is difficult to access spoken instruction.Group yoga classes usually begin with the teacher sharing some comments or a story to prompt the theme of the class. This helps us to integrate our exploration of action with the exploration of “invisible and intangible” goals. As a class, we observe our teacher’s intentional movements and mirror these both mentally and physically. As the class progresses, the teacher migrates around the class observing and attending to individual students with adjustments and other assistance. Throughout the class, the teacher alternates between observing, demonstrating and assisting, while simultaneously instructing the class verbally.Most of the students in these group classes... (shrink)

Le septième numéro de CLIO, Histoire, Femmes et Sociétés est exceptionnel à plusieurs titres. D'abord parce que son dossier thématique est globalement constitué par la publication des interventions à la journée d'étude franco-italienne « La richesse des femmes. Dots et patrimoines du Moyen Age au XIXe siècle », organisée le 6 décembre 1996 par Angela Groppi et moi-même à l'université Paris 7-Denis Diderot. Ensuite parce qu'il privilégie les périodes médiévale et moderne. Enfin parce q..

This article reports on an EU-funded project conducted in Greece, Portugal, England and Wales. Data were collected from male and female student teachers using surveys, interviews and focus groups. The project investigated their understanding of citizenship and the role of men and women in public and private life. Pateman's concept of a sexual contractwas used to discover how student teachers understood changing relations between men and women. Young professionals in each country had relatively similar representations of the public sphere, which (...) was seen as a distant sphere in which masculine power was unchallenged. The tension between power and femininity was articulated differently by men and women. Cross-national comparisons revealed how women in different European countries struggle over gender relations in family life and in everyday social contexts. Although gender relations are changing, the primary context for female citizenship is still predominantly the family. The sexual contract remains therefore a key theme to be considered in relation to the education of citizens. (shrink)

Forensic DNA phenotyping (FDP) is an emerging technology that seeks to make probabilistic inferences regarding a person’s observable characteristics (“phenotype”) from DNA. The aim is to aid criminal investigations by helping to identify unknown suspected perpetrators, or to help with non-criminal missing persons cases. Here we provide results from the analysis of 36 interviews with those who have a professional stake in FDP, including forensic scientists, police officers, lawyers, government agencies and social scientists. Located in eight EU countries, these individuals (...) were asked for their views on the benefits and problems associated with the prospective use of FDP. While all interviewees distinguished between those phenotypic tests perceived to either raise ethical, social or political concerns from those tests viewed as less ethically and socially problematic, there was wide variation regarding the criteria they used to make this distinction. We discuss the implications of this in terms of responsible technology development. (shrink)

ABSTRACTThis essay reviews the recent book by Carolyn Dean that seeks to elucidate the ways in which complaints about a “surfeit of memory” and the privileging of Jewish victimization during the Holocaust as unique and as the emblem of radical evil in our times has shaped discussions of victims in general, creating an environment in which groups vie for victim status as a means of validating their grievances and making claims for justice. The hostility to such claims has, Dean argues, (...) created antivictim discourses that end up generating aversion toward victims, primarily by denying the validity of their claims to suffering and, in the case of Jews, projecting them as “perpetrators” in their neglect of the suffering of others. At the same time, Dean argues, the demand that victims narrate their suffering in the aesthetically constrained style of “minimalism” equally undermines the legitimacy of victims' memories by demanding that they be presented in an already mastered form, thereby erasing the very trauma that, in principle, such narratives seek to represent.At stake in the debates concerning Holocaust memorial consciousness and its proper modes of representation, this article suggests, are larger historiographical and ethical issues about how to integrate the horrors of the past and the traumatic experience of terror into the normal protocols of historical writing, which rely on distance, objectivity, and interpretive critique as governing procedures. To incorporate terror into historical representation will mean acknowledging and accepting as historiographically legitimate the differing status of analytically recuperated “facts” and victim testimony and finding a way to theorize the reality of “voices” from the past without assuming the necessary “truth” of what they convey. (shrink)

Peut-on comprendre la philosophie politique classique sans s’intéresser à la famille et à la place qu’elle tient entre les individus et l’État? Peut-on ignorer la manière dont les relations familiales et les relations politiques renvoient les unes aux autres? Justine Roulin répond par la négative dans cet ouvrage. Elle choisit un découpage historique particulièrement judicieux, qui s’étend de Thomas Hobbes à John Millar, et lui permet de considérer le passage des théories du droit naturel –...

La récente Histoire des jeunes en Occident est une aventure avant tout italianno-française (ou franco-italienne) : dirigée par Giovanni Levi et Jean-Claude Schmitt, elle a été d’abord été publiée en Italie en 1994 (Storia dei giovani) avant de l’être en France deux ans plus tard. Elle rassemble une vingtaine de contributions signées par des historien(ne)s très majoritairement français et italiens et couvre une aire géographique principalement axée sur la France et l’Italie. Ses deux volumes (...