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)

In this paper we argue the need to reimagine research ethics frameworks to include notions of environmental sustainability. While there have long been calls for healthcareethics frameworks and decision-making to include aspects of sustainability, less attention has focused on howresearchethics frameworks could address this. To do this, we first describe the traditional approach to research ethics, which often relies on individualised notions of risk. We argue that we need to broaden this notion of individual risk to consider issues associated with (...) environmental sustainability. This is because research is associated with carbon emissions and other environmental impacts, both of which cause climate change health hazards. We introduce how bioethics frameworks have considered notions of environmental sustainability and draw on these to help develop a framework suitable for researchers. We provide a case study of data-driven health research to apply our framework. (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)

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)

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)

Apresenta uma análise preliminar das manifestações dos autores das Ciências Sociais e Humanas dentro do campo da Biblioteconomia e da Ciência da Informação (B & C.I.), por meio do método bibliométrico e análise de citação. Com o objetivo de descortinar quais teóricos são convocados para a construção do conhecimento na produção científica dos campos supracitados, realizou-se uma pesquisa exploratória com vistas ao levantamento dos autores das Ciências Sociais e Humanas e, posteriormente, a verificação da ocorrência deles na produção indexada pela (...) Base de Dados em Ciência da Informação (BRAPCI). Foram identificados 180 autores, dos quais 91 apareceram pelo menos uma vez nas buscas empreendidas pelos nomes e sobrenomes desses autores das Ciências Sociais e Humanas. O resultado desta pesquisa demonstrou os dois autores mais citados, Michel Foucault e Pierre Bourdieu, bem como a presença de diversos autores das Ciências Sociais e Humanas na construção do conhecimento da Biblioteconomia e da Ciência da Informação, o que contribui para o fortalecimento e a consolidação de ambas. (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)

_Material Feminisms: New Directions for Education_ provides a range of powerful theoretical and innovative methodological examples to illuminate how new material feminism can be put to work in education to open up new avenues of research design and practice. It poses challenging questions about the nature of knowledge production, the role of the researcher, and the critical endeavour arising from inter- and post-disciplinarity. Working with diffractive methodologies and new materialist ecological epistemologies, the book offers resources for hope which widen the (...) scope for how educational problems are interrogated, and provides a political counter-movement to neo-positivist, outcomes-based approaches within education. Inspired by writers such as Barad, Bennett, and Deleuze and Guattari, the book makes a radical break with cognitive, dualist, and universal conceptions of human subjectivity and intelligence in education. By taking its starting point as the co-consitutiveness of discourse, materiality, corporeality, and place, the book foregrounds educational practices as material enactments of multiple, non-linear, entangled, affective, and relational forces. It offers new insights into how gender, class, and ethnicity are constituted in, and by, material assemblages that are often submerged or ‘unseen’. This book is an essential starting place for those intrigued by what new theoretical accounts of materiality, posthumanism, and affect can offer educational research. Diffractive methodologies challenge readers to take a fuller range of actors into account than in ‘objective’ humanist methodologies, and in so doing to pay closer attention to what data is. It invites researchers to engage with long-standing feminist concerns about power and knowledge production in research processes. This book was originally published as a special issue of _Gender and Education. _. (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.

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)

This article aims to show how the changes to NEPA by the Trump Administration are an act of environmental racism, defined as “[i]ntentional or unintentional racial discrimination in environmental policy‐making, enforcement of regulations and laws, and targeting of communities for the disposal of toxic waste and siting of polluting industries.”.

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)

Justice must both be done and be seen to be done. A legal principle designed to give effect to this fundamental proposition is that a judge must not sit to determine a dispute if he or she is biased, or if there exists a reasonable perception that he or she is biased. Across many common law jurisdictions – including the UK, Australia, Canada, New Zealand and many jurisdictions in the United States – the judge in question himself or herself is (...) required to undertake the assessment of whether bias, or an apprehension of bias, exists. Drawing on insights from behavioural psychology and a series of case studies from across these jurisdictions, this paper offers an extended analysis of this practice and identifies and evaluates alternative proposals. (shrink)

IN/Search RE/Search' offers a unique insight into the wide range of appearances of the intersection between art, design and research. The book is organized into twelve substantive chapters: The Anthropocene Epoch; The Climate Crisis; The Coexerced Existence, The Limitations of Language; Facts and Fictions; The Fragile Human; The Instrumentalised Identity; Gender and Violence; The Question of Race; Politics of Public Space; Naked Capitalism; The Morality of a Cyborg. These themes are analysed through art and design projects. The projects are further (...) contextualised by journalistic explorations and academic reflections on similar matters, grappled by varied research outlooks. 00By bringing together various practices (arts, design and writing practices and academic research), 'IN/Search RE/Search' shows how artistic research processes are designed and performed. The kaleidoscopic convergence of the featured approaches promises an exciting shift in thinking about how knowledge within the arts comes about, and how this knowledge nurtures daily practice, and vice versa. In this way, this publication discloses methods of thinking and working through which a new generation of artists/designers/researchers is shaping scenarios for the near future.00The core of this publication is formed by various art and design projects by students of the Rietveld Academie and the Sandberg Instituut. Many of these projects confuse, blur and confront what is traditionally relevant in research practices. These young artists demonstrate what happens when ideas and practices that seem to be miles apart within the traditional domain of research, are suddenly allowed touch upon and influence each other. (shrink)

ArgumentThis paper contrasts the research strategies of two women reformers, Florence Kelley and Ellen Swallow Richards, which entailed different strategies of social reform. In the early 1890s, social activist Florence Kelley used the social survey as a weapon for legal reform of the working conditions of women and children in Chicago’s sweatshop system. Kelley’s case shows that her surveys were most effective as “grounded” knowledge, rooted in a local community with which she was well acquainted. Her social survey, re-enacted by (...) lawmakers and the press, provided the evidence that moved her target audience to legal action. Chemist and propagator of the Home Economics Movement Ellen Richards situated the social problem, and hence its solution, not in exploitative working conditions, but in the inefficient and wasteful usage of available resources by the poor. Laboratory work, she argued, would enable the development of optimal standards, and educational programs should bring these standards to the household by means of models and exhibits. With this aim, she constructed public spaces that she ran as food laboratories and sanitary experiments. Kelley and Richards thus crossed the doorsteps of the household in very different ways. While Florence Kelley entered the household to change the living and working conditions of the poor by changing the law, Richards flipped the household inside out by bringing women into hybrid public laboratory spaces to change their behavior by experiment and instruction. (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)

In this paper we contribute to “sociology in bioethics” and help clarify the range of ways sociological work can contribute to ethics scholarship. We do this using a case study of an innovative neurotechnology, functional magnetic resonance imaging, and its use to attempt to diagnose and communicate with severely brain-injured patients. We compare empirical data from interviews with relatives of patients who have a severe brain injury with perspectives from mainstream bioethics scholars. We use the notion of an “ethical landscape” (...) as an analogy for the different ethical positions subjects can take—whereby a person’s position relative to the landscape makes a difference to the way they experience and interact with it. We show that, in comparison to studying abstract ethics “from above” the ethical landscape, which involves universal generalizations and global judgements, studying ethics empirically “from the ground,” within the ethical landscape foregrounds a more plural and differentiated picture. We argue it is important not to treat empirical ethics as secondary to abstract ethics, to treat on-the-ground perspectives as useful only insofar as they can inform ethics from above. Rather, empirical perspectives can illuminate the plural vantage points in ethical judgments, highlight the “lived” nature of ethical reasoning, and point to all ethical vantage points as being significant. This is of epistemic importance to normative ethics, since researchers who pay attention to the various positions in and trajectories through the ethical landscape are unlikely to think about ethics in terms of abstract agency—as can happen with top-down ethics—or to elide agency with the agency of policymakers. Moreover, empirical perspectives may have transformative implications for people on the ground, especially where focus on the potential harms and benefits they face brings their experiences and interests to the forefront of ethical and policy discussion. (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)

L’article s’intéresse aux hommes et aux femmes passés dans l’histoire à l’ombre de la figure « hermaphrodite ». Pour ce faire, il s’intéresse à eux dans le cadre familial, en cessant de les réduire à leurs particularités corporelles et génitales pour les replacer dans une perspective sociale. L’état hermaphrodite permet en effet d’interroger doublement la famille : d’une part parce qu’il brouille le jeu des projections identitaires habituellement à l’œuvre entre parents et enfants et entre membres de la fratrie, de (...) l’autre parce qu’il pose le problème majeur de l’infécondité et du mariage aussi bien pour celui ou celle qui en est victime que pour la cellule familiale dans son ensemble. L’extrême diversité des relations et des affects intrafamiliaux rencontrés rappelle que si l’hermaphrodisme a été puissamment structuré au xixe siècle en catégorie médicale, il ne peut être opérant en catégorie sociale. (shrink)

People in rich countries increasingly rely on paid workers to care for many of their health and personal care needs. We expect that, in most families, love or filial piety underpin caring relationships, and that these moral bonds ensure good quality care. If paid caring relationships are not underpinned by love, what moral bonds can they rely on? Exploring contract, professional duty, and compassionate gift as normative “resources” for good paid care, I conclude that we cannot expect paid carers to (...) reproduce an idealized private sphere. Instead we can expect “good enough” care, supported by a range of normative resources. (shrink)

History, Theory, Text: Historians and the Linguistic Turn. By Elizabeth A. Clark.

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.

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)

Este manuscrito objetiva analisar, no âmbito do direito transnacional, do direito nacional e das convenções estabelecidas no mercado, características atinentes à certificação de orgânicos, tema extremamente relevante para a segurança alimentar. Desde 1970, o movimento orgânico se apresenta como um modelo alternativo em contestação aos impactos ambientais gerados pela agricultura industrial e pelos ditames da Revolução Verde. É nesta conjuntura que a Federação Internacional de Agricultura Orgânica (IFOAM) instaura um marco regulatório (certificação por auditoria) de abrangência global para este setor, (...) que, apesar de apresentar natureza privada, logra de legitimidade em inúmeros países. É oportuno destacar que a regulação não é exclusivamente oriunda do setor público, ela pode ser desenvolvida concomitantemente aos modelos estatais, assim, podemos ter modelos estatais nacionais, globais, inclusive oriundos do setor privado. Por seu turno, a legislação nacional também recepcionou estas diretrizes transnacionais, contudo alcançou identidade própria ao reconhecer os sistemas participativos de garantia da qualidade orgânica (SPG/OPAC) no intuito de contemplar a agricultura familiar de base agroecológica, o que, posteriormente, consubstanciará em uma inovação normativa em sede de soft law em nível internacional. Sem olvidar, inequivocamente, da exceção legal disposta para regularização da produção orgânica e agroecológica com vistas à venda direta da produção orgânica e agroecológica através das Organizações de Controle Social (OCS). Quanto à metodologia será utilizado o método dialético, abordagem qualitativa e objetivo analítico-descritivo, de sorte que a revisão bibliográfica será fundamental para analisar os materiais disponíveis sobre esta temática. (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)

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 (...

Social scientists have drawn attention to the role of hype and optimistic visions of the future in providing momentum to biomedical innovation projects by encouraging innovation alliances. In this article, we show how less optimistic, uncertain, and modest visions of the future can also provide innovation projects with momentum. Scholars have highlighted the need for clinicians to carefully manage the expectations of their prospective patients. Using the example of a pioneering clinical team providing deep brain stimulation to children and young (...) people with movement disorders, we show how clinicians confront this requirement by drawing on their professional knowledge and clinical expertise to construct visions of the future with their prospective patients; visions which are personalized, modest, and tainted with uncertainty. We refer to this vision-constructing work as recalibration, and we argue that recalibration enables clinicians to manage the tension between the highly optimistic and hyped visions of the future that surround novel biomedical interventions, and the exigencies of delivering those interventions in a clinical setting. Drawing on work from science and technology studies, we suggest that recalibration enrolls patients in an innovation alliance by creating a shared understanding of how the “effectiveness” of an innovation shall be judged. (shrink)

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.

The emerging discipline of educational neuroscience stands at a crossroads between those who see great promise in integrating neuroscience and education and those who see the disciplinary divide as insurmountable. However, such tension is at least partly due to the hitherto predominance of philosophy and theory over the establishment of concrete mechanisms and agents of change. If educational neuroscience is to move forward and emerge as a distinct discipline in its own right, the traditional boundaries and methods must be bridged, (...) and an infrastructure must be in place that allows for collaborative and productive exchange. In the present paper, we argue that school psychologists have the potential to fulfill this need and represent important agents of change in establishing better connections between research and practice. More specifically, we use theNational Association of School Psychologists (NASP) (2020)Domains of Practice to highlight several areas where school psychology can actively support forging connections between neuroscience and educational practice. School psychologists represent untapped potential in their knowledge, skillset, and placement to serve a vital role in building the bridge between neuroscience and education. (shrink)

In what follows I seek to answer the question on whether it is possible to integrate two different lines of research on human rationality: on the one hand, some philosophical lines of research of a cognitivist nature, and, on the other, lines of research on the logical reasoning of human agents and normative criteria. My answer to such questioning will be affirmative. To defend my point, I shall proceed as follows: first, in sec. 2 I offer the antecedents and characteristics (...) of the cognitivist notion of “intelligence” that has greater acceptance today, the general theory of intelligence, also known as the g factor. Throughout sec. 3 I present the elements thanks to which it has been considered that although g factor manages to satisfactorily evaluate the phenomenon of intelligence, it ignores relevant characteristics from the perspective of what rationality has been considered to be. Then, in sec. 4, I present some notions of rationality available in literature on the philosophy of logic, and I evaluate what are the distinctive elements of each of these characterizations. In sec. 5, I defend that it is possible to improve our understanding of cognitive styles from the elements of the philosophy of logic exposed in section four. (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)

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)

This article investigates the differential structure and representation of time in memory and history. It examines two moments in Jewish historical thought--in the Middle Ages, and in works written within and after the Holocaust--and demonstrates the fundamentally liturgical nature of Jewish historical memory in selected texts from these two periods. Following the groundbreaking work of Yerushalmi, it seeks to demonstrate that for Jews, historical experience is incorporated into the cyclical reenactment of paradigmatic events in Jewish sacred ritual. Recent or contemporary (...) experiences acquire meaning only insofar as they can be subsumed within Biblical categories of events and their interpretation bequeathed to the community through the medium of Scripture, that is to say, only insofar as they can be transfigured, ritually and liturgically, into repetitions and reenactments of ancient happening. In such liturgical commemoration, the past exists only by means of recitation; the fundamental goal of such recitation is to make it live again in the present, to fuse past and present, chanter and hearer, into a single collective entity. History, in the sense that we understand it to consist of unique events unfolding within irreversible linear time, is absorbed into cyclical, liturgical memory.This article argues that the question of Jewish history--both medieval and post-Holocaust--poses in a compelling fashion the question of the relationship between memory and history more generally, and serves to contest the current tendency in academic historiography to collapse history into memory. It claims that to the extent that memory "resurrects," " re-cycles," and makes the past "reappear" and live again in the present, it cannot perform historically, since it refuses to keep the past in the past, to draw the line, as it were, that is constitutive of the modern enterprise of historiography. (shrink)