Driven by technological innovations, newborn screening (NBS) panels have been expanded and the development of genomic NBS pilot programs is rapidly progressing. Decisions on disease selection for NBS are still based on the Wilson and Jungner (WJ) criteria published in 1968. Despite this uniform reference, interpretation of the WJ criteria and actual disease selection for NBS programs are highly variable. A systematic literature search [PubMED search “Wilson” AND “Jungner”; last search 16.07.22] was performed to evaluate the applicability of the WJ (...) criteria for current and future NBS programs and the need for adaptation. By at least two reviewers, 105 publications (systematic literature search, N = 77; manual search, N = 28) were screened for relevant content and, finally, 38 publications were evaluated. Limited by the study design of qualitative text analysis, no statistical evaluation was performed, but a structured collection of reported aspects of criticism and proposed improvements was instead collated. This revealed a set of general limitations of the WJ criteria, such as imprecise terminology, lack of measurability and objectivity, missing pediatric focus, and absent guidance on program management. Furthermore, it unraveled specific aspects of criticism on clinical, diagnostic, therapeutic, and economical aspects. A major obstacle was found to be the incompletely understood natural history and phenotypic diversity of rare diseases prior to NBS implementation, resulting in uncertainty about case definition, risk stratification, and indications for treatment. This gap could be closed through the systematic collection and evaluation of real-world evidence on the quality, safety, and (cost-)effectiveness of NBS, as well as the long-term benefits experienced by screened individuals. An integrated NBS public health program that is designed to continuously learn would fulfil these requirements, and a multi-dimensional framework for future NBS programs integrating medical, ethical, legal, and societal perspectives is overdue. (shrink)

This essay argues that a black radical Kantianism proposes a Kantian theory of justice in the circumstances of injustice. First, I describe BRK’s method of political critique and explain how it builds on Kant’s republicanism. Second, I argue that Kant’s original account of public right is incomplete because it neglects that a situated citizenry’s adoption of an ideal contributes to its refinement. Lastly, with the aid of W.E.B. Du Bois’s analysis of American Reconstruction and his proposal of an “abolition democracy,” (...) I offer my refined universalizable standard for political critique. Du Bois reconceptualizes the requirements of justice to protect the political liberties and productive powers of black freedmen and the working poor. While originating with the political demands of black freedmen during the Reconstruction era, the universal protection of political liberties and productive powers offers a novel public standard for political judgment that should still anchor deliberation today. (shrink)

This article applies Charles W. Mills’ notion of the domination contract to develop a Kantian theory of justice. The concept of domination underlying the domination contract is best understood as structural domination, which unjustifiably authorizes institutions and labour practices to weaken vulnerable groups’ public standing as free, equal and independent citizens. Though Kant’s theory of justice captures why structural domination of any kind contradicts the requirements of justice, it neglects to condemn exploitive gender- and race-based labour relations. Because the ideal (...) of civic equality must position all persons as co-legislators of the terms of political rule, the state must dismantle exploitive race- and gender-based labour relations for all persons to command political power as civic equals. (shrink)

This essay develops Kant’s theory of reform to theorize racial justice reform. I assess the function of Kant’s philosophy of race as part of his nonideal theory of justice, which offers a racist pragmatic anthropology that uses the concept of race to determine the practical effectiveness of legislative reason. His philosophy of race defends a teleological account of the natural history of the human species to fulfill the requirements of justice and assumes that certain racial groups have failed to develop (...) their innate capacity for legislative reason. I show that we need an alternative Kantian nonideal theory of justice that demonstrates how legislative reason actualizes practical freedom. Rather than appeal to anthropology, I expand Kant’s model of public reason to advance racial justice reform under the conditions of partial compliance to the requirements of justice in a profoundly nonideal republic such as the U.S. I then showcase the promise—and limits—of the a priori ideals of citizenship and publicity for racial justice reform and introduce the ideal of interracial civic fellowship to guide the public use of reason in nonideal circumstances. (shrink)

W.E.B. Du Bois’s socialism has provoked debate for decades. His democratic theory and critique of political economy supports democratic socialism. In this article, I offer a philosophical reconstruction of the normative foundation of his democratic socialism in three steps. First, I argue that his philosophy of the modern democratic state supports the people’s advance of the principle of free and equal citizenship or civic equality. Next, I present his critique of the modern American welfare state, which asserts the fair value (...) of political liberty and democratic control over productive activities. Finally, I introduce the method of the excluded groups from Darkwater as an ideal procedure for guiding democratic deliberation in a profoundly nonideal public sphere. The method foregrounds the voices of excluded groups to correct asymmetrical relations of practical power and to infuse democratic reason with practical intelligence, namely, new content and values that can lead to the development of a democratic socialist state. (shrink)

In this essay I develop W.E.B. Du Bois’s concept of double consciousness to demonstrate the limitations of Kant’s and Rawls’s models of self-respect. I argue that neither Kant nor Rawls can explain what self-respect and resistance to oppression warrants under the conditions of violent and systematic racial exclusion. I defend Du Bois’s proposal of voluntary black self-segregation during the Jim Crow era and explain why Du Bois believes that the black American community has a moral right to assert its self-respect (...) by mitigating exposure to racial violence and animus in a white-controlled polity. (shrink)

This essay offers a Duboisian defense of democracy’s expressive and experimental values. It argues that the expressive value of democracy supports an ideal of inclusion, whereas the experimental value of democracy supports that of innovation. One appeals to the ideal of inclusion to extend to excluded groups codified constitutional protections and to condemn white hypocrisy. The ideal of innovation, in contrast, helps one reimagine what constitutional protections should be in the first place. Drawing on Du Bois’s writings, this essay argues (...) that the civic activities of black American counter-publics exhibited both experimental and expressive democratic values. In particular, it highlights the innovations of black women civic leaders who reimagined care work under a public conception of the common good. It concludes that counter-publics shape the asymmetric moral insight of its participants, namely, the oppressed. (shrink)

To highlight the promise of Jordan Pascoe’s Kant’s Theory of Labour, my comments concern the diagnostic and prescriptive dimensions of the book’s excellent intersectional critique of dependent labour relations. The diagnostic dimension of Pascoe’s critique establishes that the organisation of dependent labour relations is a neglected problem of Kantian justice. The prescriptive dimension offers solutions to this problem but is underdeveloped. To enhance the book’s prescriptive dimension, I draw on the noted Africana philosopher W. E. B. Du Bois for guidance. (...) For Du Bois, a constitutional republic ought to strive for the abolition of a ‘second’ slavery following the abolition of de jure black chattel slavery with the end of the American Civil War. Given Du Bois’ call for meaningful Emancipation, I argue that philosophers should reinterpret the Kantian normative ideal of freedom as universal independence to uproot the postbellum conditions of second slavery. (shrink)

In this article, I defend the pragmatic relevance of race in history. Kant and Hegel's racist development thesis assumes that nonwhite, non-European racial groups are defective practical agents. In response, philosophers have opted to drop race from a theory of history and progress. They posit that denying its pragmatic relevance amounts to anti-racist egalitarianism. I dub this tactic “colorblind cosmopolitanism” and offer grounds for its rejection. Following Du Bois, I ascribe, instead, a pragmatic role to race in history. Namely, Du (...) Bois argues that race is an “instrument of progress” that advances emancipatory struggle. He appeals to the writing of history—or historiography—to cultivate group consciousness of historical memory in order to strengthen intragroup bonds among the racially oppressed, especially black Americans, and create intergroup bonds that reconstruct the republic on the basis of universal ideals. I detail Du Bois's defense of the black struggle for freedom in the wake of the U.S. Civil War to provide a concrete illustration of “spirit” in American history. (shrink)

This essay presents the normative foundation of W.E.B. Du Bois’s constructivist theory of justice in three steps. First, I show that for Du Bois the public sphere in Anglo-European modern states consists of a dialectical interplay between reasonable persons and illiberal rogues. Second, under these nonideal circumstances, the ideal of autonomy grounds reasonable persons’ deliberative openness, an attitude of public moral regard for others which is necessary for constructing the terms of political rule. Though deliberative openness is the essential vehicle (...) of construction, reasonable persons only have a pragmatic political obligation to forge ties of deliberative reciprocity with likeminded persons whom they trust will listen and not harm them. Finally, I present Du Bois’s defense of black suffragists’ support of the 19th Amendment to illustrate pragmatic political obligation in action. I sketch successful democratic engagement that reconstitutes a nonideal public sphere. (shrink)

In this tour-de-force, Elvira Basevich examines this paradox by tracing the development of W.E.B. Du Bois's life and thought and the relevance of his legacy to our troubled age. She adroitly analyzes the main concepts that inform Du Bois’s critique of American democracy, such as the color line and double consciousness, before examining how these concepts might inform our understanding of contemporary struggles, from Black Lives Matter to the campaign for reparations for slavery. She stresses the continuity in Du (...) Bois’s thought, from his early writings to his later embrace of self-segregation and Pan-Africanism, while not shying away from assessing the challenging implications of his later work.This wonderful book vindicates the power of Du Bois’s thought to help transform a stubbornly unjust world. It is essential reading for racial justice activists as well as students of African American philosophy and political thought. (shrink)

In this essay, I challenge Charles Mills’s use of the category of moral personhood for advancing a robust anti-racist political critique in nonideal circumstances. I argue that the idea of the moral equality of persons is necessary but insufficient for reparative justice. I enrich the normative basis of political critique to include: (1) a clarification of what the public recognition of moral personhood can legitimately entail as a requirement of justice enforceable by the state, especially with respect to economic reforms (...) that advance equal opportunity and (2) a conception of non-alienated labor that assails identity-based occupational segregation in the labor market. These additional components do not exhaust the plausible bases for political critique, but enrich it in a way that the idea of moral equality alone cannot. (shrink)

RésuméEn réponse à l'article de D. C. Matthew, « Racial Integration and the Problem of Relational Devaluation », j'examine la politique de la beauté physique à l'intersection entre les catégories de race et de genre. J’évalue et je rejette l'affirmation de Matthew selon laquelle être perçu comme physiquement attrayant se traduit à coup sûr soit par un bon traitement, soit par une haute estime de soi. Je soutiens que, au contraire, le genre peut fonctionner comme un moyen de contrôle social, (...) dans lequel le désir du corps des femmes n'apporte aucun bon traitement ni n'améliore leur estime de soi. Ce problème peut persister au sein des communautés raciales intragroupes autoségréguées. (shrink)

This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data from Digital Mental Health (...) services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users’ expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research in an ethical manner that includes vulnerable young people as research participants. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users’ control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and ‘read more’ options. (shrink)

In the last few years, a remarkable convergence of interests and results has emerged between scholars interested in the arts and aesthetics from a variety of perspectives and cognitive scientists studying the mind and brain within the predictive processing (PP) framework. This convergence has so far proven fruitful for both sides: while PP is increasingly adopted as a framework for understanding aesthetic phenomena, the arts and aesthetics, examined under the lens of PP, are starting to be seen as important windows (...) into our mental functioning. The result is a vast and fast-growing research programme that promises to deliver important insights into our aesthetic encounters as well as a wide range of psychological phenomena of general interest. Here, we present this developing research programme, describing its grounds and highlighting its prospects. We start by clarifying how the study of the arts and aesthetics encounters the PP picture of mental functioning (§1). We then go on to outline the prospects of this encounter for the fields involved: philosophy and history of art (§2), psychology of aesthetics and neuroaesthetics (§3) and psychology and neuroscience more generally (§4). The upshot is an ambitious but well-defined framework within which aesthetics and cognitive science can partner up to illuminate crucial aspects of the human mind. -/- This article is part of the theme issue ‘Art, aesthetics and predictive processing: theoretical and empirical perspectives’. -/- . (shrink)

The voices of children and young people have been largely neglected in discussions of the extent to which the internet takes into account their needs and concerns. This paper aims to highlight young people’s lived experiences of being online.