Expanded universal carrier screening (EUCS) entails a population‐wide screening offer for multiple disease‐causing mutations simultaneously. Although there is much debate about the conditions under which EUCS can responsibly be introduced, there seems to be little discussion about its aim: providing carrier couples with options for autonomous reproductive choice. While this links in with current accounts of the aim of foetal anomaly screening, it is different from how the aim of ancestry‐based carrier screening has traditionally been understood: reducing the disease burden (...) in the population. The reasons why the aim of EUCS is presented in terms of ‘autonomy’ rather than ‘prevention’ have not been spelled out in the literature. This paper seeks to fill this gap by considering the morally relevant similarities and dissimilarities between foetal anomaly screening, ancestry‐based carrier screening and EUCS. When carrier screening is performed in the prenatal period, enhancing autonomy appears the most appropriate aim of EUCS, as the alternative of ‘prevention through selective abortion’ would urge women to terminate wanted pregnancies. However, when screening is conducted in the preconception period, carrier couples can avoid the birth of affected children by other means than selective abortion, for instance preimplantation genetic diagnosis. To the extent that this increased control over passing on a genetic disorder raises questions of parental responsibility, it seems necessary that the account of the aims of EUCS is wider than only in terms of enhancing reproductive autonomy. (shrink)

Autistic people, and other community stakeholders, are gaining increasing recognition as valuable contributors to autism research, resulting in a growing corpus of participatory autism research. Yet, we know little about the ways in which stakeholders practice and experience community engagement in autism research. In this study, we interviewed 20 stakeholders regarding their experiences of community engagement in Australian autism research. Through reflexive thematic analysis of interview data, we generated four themes. First, our participants perceived academia as an “ivory tower,” disconnected (...) from community members’ lives and priorities. Second, our participants identified that different stakeholders tended to hold different roles within their research projects: academics typically retained power and control, while community members’ roles tended toward tokenism. Third, our participants spoke of the need to “bridge the gap” between academia and the community, highlighting communication, accessibility, and planning as key to conducting effective participatory research. Lastly, participants emphasized the changing nature of autism research, describing participatory research as “the way of the future.” Our findings reflect both the progress achieved to date, and the challenges that lie ahead, as the field advances toward genuine co-production of autism research. (shrink)

Klein, Renate The practice of surrogacy in Australia has been controversial since its beginning in the late 1980s. In 1988, the famous 'Kirkman case' in the state of Victoria put surrogacy on the national map. This was a two-sisters surrogacy - Linda and Maggie Kirkman and the resulting baby Alice - in which power differences between the two women were extraordinarily stark: Maggie was the glamorous and well spoken woman of the world; Linda who carried the baby, was the (...) demure school teacher in child-like frocks and pig tails. Their IVF doctor applauded altruistic surrogacy. He called it 'gestational surrogacy' and proclaimed that if the so-called surrogate mother didn't use her own eggs, thus wasn't the baby's 'genetic' mother, no attachment would ensue! This statement is haunting us to this day. It is patently absurd: as a baby grows in a woman's body over the nine months of the pregnancy, it is hard to see why the 24/7 presence of the baby inside her body, its growth, its interaction with her would be any different whether s/he has the mother's genes! (shrink)

Recent developments around the sharing economy bring to the fore questions of governability and broader societal benefit—and subsequently the need to explore effective means of public governance, from nurturing, on the one hand, to restriction, on the other. As sharing is a predominately urban phenomenon in modern societies, cities around the globe have become both locus of action and central actor in the debates over the nature and organization of the sharing economy. However, cities vary substantially in the interpretation of (...) potential opportunities and challenges, as well as in their governance responses. Building on a qualitative comparative analysis of 16 leading global cities, our findings reveal four framings of the sharing economy: ‘societal endangerment,’ ‘societal enhancement,’ ‘market disruption,’ and ‘ecological transition.’ Such framings go hand in hand with patterned governance responses: although there is considerable heterogeneity in the combination of public governance strategies, we find specific configurations of framings and public governance strategies. Our work reflects the political and ethical debates on various economic, social, and moral issues related to the sharing economy, and contributes to a better understanding of the field-level institutional arrangements—a prerequisite for examining moral behavior of sharing economy organizations. (shrink)

In this article, we model FPTP systems as social preference rules and give two characterizations. We show that a social preference rule is an FPTP system if, and only if, it satisfies the axioms of subset consistency, district consistency, subset cancellation, and district cancellation. The second characterization consists of the axioms of subset consistency, subset anonymity, neutrality, topsonlyness, Pareto optimality, district consistency and district cancellation. The characterizations give us an opportunity to compare the characteristic properties of FPTP systems to the (...) characteristic properties that we found for list systems of proportional representation (list PR systems) in Hout et al. (Social Choice and Welfare, 27:459–475, 2006), where we modelled those systems also as social preference rules. We find that consistency and anonymity distinguish list PR systems from FPTP systems. On the other hand, it is district cancellation that distinguishes FPTP systems from list PR systems. (shrink)

Julie Houts has cultivated a devoted following as "Instagram's favourite illustrator" (Vogue) by lampooning the conflicting messages and images women consume and share with the world every day. A collection of darkly comic illustrated essays, Literally Me chronicles the daily exploits of "slightly antisocial heroines" (Refinery29) in vivid, excruciatingly funny detail, including: -The beauty routine of a deranged bride who aspires to be "truly without flaws" on her wedding day -What happens when Kylie Jenner has an existential crisis and (...) can no longer "step out" -A journey to Coachella by the Four Horsewomen of the Apocalypse -The true dating confessions of a fembot -The terrifying description for Alice Staunch's book How to be the Perfect Feminist -The diary of Fiddle Ficus, a tree that lives inside a CÉLINE store, and much more. Literally Me marks the launch of a brilliant new social satirist. Julie's singular voice and beautiful illustrations reveal the truth about the absurdity of life in the social media age: the line between becoming a total `Girlboss' and a 21st-century American Psycho is razor-thin."--Dust jacket. (shrink)

Precision medicine and digital phenotyping are two prominent data-based approaches within digital medicine. While precision medicine historically used primarily genetic data to find targeted treatment options, digital phenotyping relies on the usage of big data deriving from digital devices such as smartphones, wearables and other connected devices. This paper first focusses on the aspect of data type to explore differences and similarities between precision medicine and digital phenotyping. It outlines different ways of data collection and production and the consequences thereof. (...) Second, it shows how these sorts of data influence dominant beliefs in the field: The field of precision medicine relying on the dominant understanding of ‘genetic determinism’ imported from genetics, digital phenotyping building on the logic of ‘data fundamentalism’. In the end, the analysis shows how digital data informs potentials as well as challenges of precision medicine and digital phenotyping: a better health care for individuals connected with individualisation and responsibilisation for all, with a prognosed shift from reactive to preventive medicine. Additionally, data-based approaches might facilitate epistemological and ontological redirections for the whole field of medicine that will also affect knowledge production and a reassessment of the value of different types of knowledge with all its consequences. Institutionally, it might lead to shifts in distribution of power to experts in big data related technologies, i.e. private companies. (shrink)

mechanism" is frequently encountered in the social science literature, but there is considerable confusion about the exact meaning of the term. The article begins by addressing the main conceptual issues. Use of this term is the hallmark of an approach that is critical of the explanatory deficits of correlational analysis and of the covering-law model, advocating instead the causal reconstruction of the processes that account for given macro-phenomena. The term "social mechanisms" should be used to refer to recurrent processes generating (...) a specific kind of outcome. Explanation of social macro-phenomena by mechanisms typically involves causal regression to lower-level elements, as stipulated by methodological individualism. While there exist a good many mechanism models to explain emergent effects of collective behavior, we lack a similarly systematic treatment of generative mechanisms in which institutions and specific kinds of structural configurations play the decisive role. Key Words: causal regression • correlational analysis • emergent effects • micro-macro processes • social mechanisms • structural determinants. (shrink)

The Gesta Normannorum Ducum is one of the most important sources for the history of Normandy and England in the eleventh and twelfth centuries, and contains the earliest prose account of the Norman Conquest. It was written by a succession of authors, the first of whom was William of Jumièges, who wrote for William the Conqueror. Later writers, such as Orderic Vitalis and Robert of Torigni, interpolated and extended the chronicle as far as King Henry I. The later accretions reveal (...) much not only about changing attitudes towards the Norman invasion of England, but also about views of the early Viking foundation of Normandy. Elisabeth van Houts's two-volume edition is based on a study of all forty-seven extant manuscripts of the Gesta, including the earliest surviving copy of c. 1100, hitherto unknown. The full original text of William of Jumièges is supplied, as well as the integral text of the subsequent revisions and additions. Volume I contains Dr van Houts's introduction to the whole work, together with the text and translation of books i-iv. Books v-viii will appear in Volume II. The edition forms an important contribution to our understanding of Anglo-Norman politics. (shrink)

This study of the workings of neural networks in perception and understanding of situations and simple sentences shows that, and how, distributed conceptual constituents are bound together in episodes within an interactive/dynamic architecture of sensorial and pre-motor maps, and maps of conceptual indicators (semantic memory) and individuating indicators (historical, episodic memory). Activation circuits between these maps make sensorial and pre-motor fields in the brain function as episodic maps creating representations, which are expressions in consciousness. It is argued that all consciousness (...) is episodic, consisting of situational or linguistic representations, and that the mind is the whole of all conscious manifestations of the brain. Thought occurs only in the form of linguistic or image representations. The book also discusses the role of consciousness in the relationship between causal and denotational semantics, and its role for the possibility of representations and rules. Four recent controversies in consciousness research are discussed and decided along this model of consciousness: • Is consciousness an internal or external monitoring device of brain states? • Do all conscious states involve thought and judgement? • Are there different kinds of consciousness? • Do we have a one-on-one correspondence between certain brain states and conscious states. The book discusses also the role of consciousness in the relationship between causal and denotational semantics, and its role for the possibility of representations and rules. (Series A). (shrink)

We explore in this paper the relation between activities, communication channels and media, and common ground building in global teams. We define re-representation as a sequence of representations of the same concept using different communication channels and media. We identified the re - representation technique to build common ground that is used by team members during multimodal and multimedia communicative events in cross-disciplinary, geographically distributed settings. Our hypotheses are as follows: (1) Significant sources of information behind decisions and request for (...) actions are embedded within the fabric of communicative events in which participants use both informal and formal media to express their ideas. Capturing these information sources can facilitate common ground building and accelerate the execution of action requests. (2) Re-representations of concepts, i.e., sequences of representations using diverse media and communication channels, mediate and accelerate common ground building. (3) The use of intra- or interdisciplinary re-representations correlates with high team performance, i.e., effective team process and high product quality. We used AEC Global Teamwork course offered in 2008–2009 as the testbed for our study to validate our hypothesis. (shrink)

There are only five letters and two postcards which were written by Emmy Noether to P.S. Alexandroff that have been preserved. These will be edited in this paper. More than any other source, these letters and postcards give an insight into Emmy Noether's privacy, and her sympathy for the problems of her pen pal and colleagues. They illuminate her judgement of different colleagues, students, «mathematical grandchildren» and their papers. They also inform about relationships within the mathematicians' community and the working (...) atmosphere in Goettingen and the US after 1933. The author thanks Prof. Dr. Walter Purkert, Bonn, for the reference to the writings of Emmy Noether, and Prof. Dr. Albert Shiryaev, Moscow, for the kind publication permission. (shrink)

As COVID-19 continues to spread, a variety of COVID-19 tracking apps (CTAs) have been introduced to help contain the pandemic. Deployment of this technology poses serious challenges of effectiveness, technological problems and risks to privacy and equity. The ethical use of CTAs depends heavily on the protection of voluntariness. Voluntary use of CTAs implies not only the absence of a legal obligation to employ the app but also the absence of more subtle forms of coercion such as enforced exclusion from (...) certain social and work activities. The protection of individual rights to voluntary use can be enhanced through an ethics by design approach in the development of CTAs that treat the introduction of CTAs for what it is: a complete novelty that is being tested for the first time in democracies. (shrink)

This book provides the first detailed account of Gramsci's work in the context of current critical and socio-cultural debates. Renate Holub argues that Gramsci was ahead of his time in offering a theory of art, politics and cultural production. Gramsci's achievement is discussed particularly in relation to the Frankfurt School (Adorno, Horkheimer, Benjamin, Bloch, Habermas), to Brecht's theoretical writings and to thinkers in the phenomenological tradition especially Merleau-Ponty. She argues for Gramsci's continuing relevance at a time of retreat from (...) Marxist positions on the postmodern left. Antonio Gramsci is distinguished by its range of philosophical grasp, its depth of specialized historical scholarship, and its keen sense of Gramsci's position as a crucial figure in the politics of contemporary cultural theory. (shrink)

This paper discusses the characteristic properties of List PR systems and FPTP systems, as given in Hout 2005 and Hout et al. 2006. While many of the properties we consider are common to both systems, it turns out (see Hout 2005) that the British system distinguishes itself by satisfying the district cancellation property, while the Dutch system distinguishes itself by satisfying consistency and anonymity. For scoring rules, topsonlyness is equivalent to being party fragmentation-proof (see Hout 2005; Hout et al. 2006). (...) One might present this as an argument in favour of requiring topsonlyness. However, we will also give counter-arguments against insisting upon the property of being party fragmentation-proof. (shrink)

This paper offers a contribution to ecophilosophy from the perspective of the scientific research of the environment. The problem considered in the paper deals with a specific issue of environmental risk, namely, the problem of radon ionizing radiation and the highest permissible security norms of it. This problem, now rarely discussed in ecological communities, is one of more important for humankind’s health and safe existence. The awareness of harmful and beneficial biological effects of various environmental factors is a basic step (...) towards ensuring the security of public health. The admissible norms of radon radiation are different in different countries. The article suggests possible causes of these differences and puts forward the thesis that today’s science alone is not a sufficient ground of resolving ecological problems. (shrink)

This paper describes an exploratory comparative study of knowledge workers and their challenges in high tech global project teams. More specifically we focus on the tension between perceived collocation and actual geographical distributed project work as a function of: (1) the demand to distribute and shift attention in multi-teaming, (2) virtuality i.e. number of virtual teams participants engage in, (3) the continuous adjustment and re-adjustment to new places they perform their activity, and (4) the collaboration technologies they use. We present (...) the methodology for data collection that included semi-structured interviews, surveys, and on site shadowing of the project participants, and discuss the findings from the data analysis. The study is based on the bricks-bits-interaction framework. It is at the intersection of the design of physical spaces, i.e., bricks; rich digital information and collaboration technology (ICT) content, mobile devices and network infrastructures, i.e., bits, and emergent work practices, process, and new ways people behave in communicative events using the affordances of ICT augmented physical, virtual spaces and digital content, i.e., interaction. (shrink)