Genomic screening at population scale generates many ethical considerations. One is the normative role that people’s preferences should play in determining access to genomic information in screening contexts, particularly information that falls beyond the scope of screening. We expect both that people will express a preference to receive such results and that there will be interest from the professional community in providing them. In this paper, we consider this issue in relation to the just and equitable design of population screening (...) programs like reproductive genetic carrier screening (RGCS). Drawing on a pluralistic public health ethics perspective, we claim that generating and reporting information about genetic variants beyond the scope of the screening program usually lacks clinical, and perhaps personal, utility. There are both pragmatic and ethical reasons to restrict information provision to that which fits the stated purpose of the program. (shrink)

The concept of autonomy plays a central role in bioethics,1 but there is no consensus as to how we should understand it beyond a general notion of self-determination. The conception of autonomy deployed in applied ethics2 can have crucial ramifications when it is applied in real-world scenarios, so it is important to be clear. However, this clarity is often lacking when autonomy is discussed in the bioethics literature. In this paper we outline three different conceptions of autonomy, and argue that (...) a substantive, perfectionist approach meets the theoretical requirements for an account of autonomy and also provides practical guidance. As Rebecca Walker argues, bioethics requires a more conceptually adequate account... (shrink)

Reproductive genetic carrier screening (RCS), when offered to anyone regardless of their family history or ancestry, has been subject to the critique that it is a form of eugenics. Eugenics describes a range of practices that seek to use the science of heredity to improve the genetic composition of a population group. The term is associated with a range of unethical programmes that were taken up in various countries during the 20th century. Contemporary practice in medical genetics has, understandably, distanced (...) itself from such programmes. However, as RCS becomes more widespread, gains public funding and uses expanded gene panels, there are concerns that such programmes could be perceived as eugenic either in intent or outcome. The typical response to the eugenics critique of RCS is to emphasise the voluntary nature of both participating in screening and making subsequent reproductive choices. While safeguarding individuals’ freedom to choose in relation to screening is essential, we consider this response inadequate. By examining the specific ethical wrongs committed by eugenics in the past, we argue that to avoid the perception of RCS being a form of eugenics it is essential to attend to the broader normative context in which reproductive decisions occur. Furthermore, ethical RCS programmes must recognise and respond to their potential to shift societal norms that shape individual reproductive choices. (shrink)

While this paper does not explicitly define the concept of autonomy, the way Ubel et al describe clinicians’ failures to enhance their patients’ autonomy reflects a broader understanding of autonomy than the default account as free and informed choice. In this OPC I would demonstrate that the communication strategies the authors recommend reflects a more sophisticated conception of autonomy than the understanding that typically prevails in bioethics. I will also distinguish between weak and strong forms of paternalism, and argue that (...) a weak paternalistic approach is not only defensible but also aligns with the strategies the authors propose. Thus, by clarifying the concept of autonomy we can show how it can be enhanced in practice. (shrink)

Reproductive genetic carrier screening is increasingly being offered more widely, including to people with no family history or otherwise elevated chance of having a baby with a genetic condition. There are valid reasons to reject a prevention-focused public health ethics approach to such screening programs. Rejecting the prevention paradigm in this context has led to an emphasis on more individually-focused values of freedom of choice and fostering reproductive autonomy in RCS. We argue, however, that population-wide RCS has sufficient features in (...) common with other public health screening programs that it becomes important also to attend to its public health implications. Not doing so constitutes a failure to address the social conditions that significantly affect people’s capacity to exercise their reproductive autonomy. We discuss how a public health ethics approach to RCS is broader in focus than prevention. We also show that additional values inherent to ethical public health—such as equity and solidarity—are essential to underpin and inform the aims and implementation of reproductive carrier screening programs. (shrink)

In healthcare broadly, and especially in genetic medicine, there is an ongoing debate about whether patients have a right not to know information about their own health. The extensive literature on this topic is characterised by a range of different understandings of what it means to have a RNTK,1–9 and how this purported right relates to patient autonomy. Ben Davies considers whether obligations not to place avoidable burdens on a publicly funded healthcare system might form the basis for an obligation (...) to acquire relevant health information, and hence refute the RNTK. He also makes the interesting argument that an obligation to know does not necessarily limit the RNTK. Davies summarises the more prominent arguments against the RNTK, including harm-to-others arguments that focus on potential harms to individuals related to the patient. However he then considers the RNTK in the context of the obligations that people have to each other within a publicly funded healthcare system. So rather than focusing on harms to specific individuals, Davies’ argument is instead based on the wrong of needlessly consuming public healthcare resources. If a person avoids health-related information and thereby exacerbates their health problems, this makes them more complex and expensive to treat. Davies argues that this constitutes …. (shrink)

The “right not to know” has generated significant discussion, especially regarding genetic information. In this paper, I argue that this purported right is better understood as a preference and that treating it as a substantive right has led to confusion. To support this claim, I present three critiques of the way the right not to know has been characterized. First, I demonstrate that the many conceptualizations of this right have hampered debate. Second, I show that the way autonomy is conceptualized (...) in this literature is also problematic. Third, I examine the notion of a right in more detail, to support my third critique: that the right to know and the right not to know genetic information are often erroneously treated as having equivalent status. On my understanding, the claim being made is better thought of as a preference, not a right, and a preference not to know certain information becomes only one of several considerations relevant to medical decision making. (shrink)

Biobanks are increasingly being linked together into global networks in order to maximise their capacity to identify causes of and treatments for disease. While there is great optimism about the potential of these biobank networks to contribute to personalised and data-driven medicine, there are also ethical concerns about, among other things, risks to personal privacy and exploitation of vulnerable populations. Concepts drawn from theories of globalisation can assist with the characterisation of the ethical implications of biobank networking across borders, which (...) can, in turn, inform more ethically sophisticated responses. Using the China Kadoorie Biobank as a case study, we show how distinguishing between the subnational, transnational, supranational and extranational spheres of operation and influence can help researchers, institutions and regulators to understand and manage the ethical issues raised by the globalisation of biobanking. (shrink)

Reproductive genetic carrier screening provides information about people's chance of having children with certain genetic conditions. Severity of genetic conditions is an important criterion for their inclusion in carrier screening programmes. However, the concept of severity is conceptually complex and underspecified. We analyse why severity is an important concept in carrier screening and for reproductive decision-making and show that assessments of severity can also have normative societal implications. While some genetic conditions are unambiguously associated with a high degree of suffering, (...) there are many factors that contribute to how severe a condition is perceived to be, and perspectives will vary. Attempts to classify genetic conditions according to their severity tend to prioritise biomedical information at the expense of incorporating qualitative aspects of the impact of genetic conditions on people's lives. Further complexity arises because some genotypes can present with variable phenotypes and because some conditions are not always experienced in the same way by all people who have them. To acknowledge this complexity, we argue that an understanding of severity needs to distinguish between the severity of a genetic condition—requiring a generalised approach for purposes of policy development and programme design—and the severity of an instance of a genetic condition in a particular person. Families making reproductive decisions also require access to diverse experiences of the qualitative aspects of living with genetic conditions. As a result, reproductive carrier screening programmes must recognise and respond to the complexity inherent in determining the severity of genetic conditions. (shrink)

Volume 19, Issue 5, May 2019, Page 45-47.

In their analysis of how much fetal genetic information prospective parents should be able to access, Bayefsky and Berkman determine that parents should only be able to access information th...

BackgroundBiobanks provide an important foundation for genomic and personalised medicine. In order to enhance their scientific power and scope, they are increasingly becoming part of national or international networks. Public trust is essential in fostering public engagement, encouraging donation to, and facilitating public funding for biobanks. Globalisation and networking of biobanking may challenge this trust.MethodsWe report the results of an Australian study examining public attitudes to the networking and globalisation of biobanks. The study used quantitative and qualitative methods in conjunction (...) with bioethical analysis in order to determine factors that may contribute to, and threaten, trust.ResultsOur results indicate a generally high level of trust in biobanks and in medical research more broadly. Key factors that can reduce perceived trustworthiness of biobanks are commercialisation and involvement in global networking.ConclusionsWe conclude that robust ethical oversight and governance standards can both promote trust in global biobanking and ensure that this trust is warranted. (shrink)

It is unarguable that the implementation and use of noninvasive prenatal testing (NIPT) should be critical and appropriate. After all, decisions that influence when and how to have children have ut...

Jean Dominique Bauby, former editor of Elle, suffereda stroke to his brain stem that left him with locked-in syndrome. Subsequently, through blinking his left eye, he writes his memoirof this experience, The Diving Bell and the Butterfly. Thispaper explores the meaning of embodiment, especially as one'sbody bears upon one's personal identity. It explores the variouschallenges and threats to selfhood that result from Bauby'sexperience and recounts how Bauby rises to the challenge throughhis memory and imagination.

Beginning in the mid-1930s the comparative physiologists Laurence Irving and Per Fredrik Scholander pioneered the study of diving mammals, particularly harbor seals. Although resting on earlier work dating back to the late nineteenth century, their research was distinctive in several ways. In contrast to medically oriented physiology, the approaches of Irving and Scholander were strongly influenced by natural history, zoology, ecology, and evolutionary biology. Diving mammals, they argued, shared the cardiopulmonary physiology of terrestrial mammals, but evolution had modified (...) these basic adaptive processes in extreme ways. In particular, seals’ remarkable ability to hold breath, lower metabolism, produce energy anaerobically, and resist asphyxiation, provided a sharp contrast with terrestrial mammals, including humans. This diving physiology was an extreme elaboration of a general regulatory mechanism that allowed seals and other diving mammals to remain active underwater for extended periods. The decrease in heart rate referred to as bradycardia or the “diving reflex” was highly developed in diving mammals, but also found in less developed form in many other organisms faced by asphyxia. It therefore served as a kind of “master switch” for lowering metabolism in diving, hibernation, parturition, drowning, and other physiological responses involving lack of oxygen. Studying bradycardia unified a wide diversity of physiological phenomena, while also providing a context for contrasting the physiological responses of various species, including humans. Conducted in the laboratory and the field, this research served as a bridge between a comparative physiological ecology focused on non-human species and a human-centered general physiology. (shrink)

Diving into the Gospel of John displays the rich and diverse arguments John presents for his thesis that Jesus is the Messiah, the Son of God, and that through believing, readers/listeners will find eternal life. John’s arguments are developed in four parts. The first two chapters develop the author’s literary techniques that are often based on ambiguity and his key symbols and concepts, the understanding of which are essential to fully appreciate the Gospel. Chapters three through six progressively portray (...) the author’s evidence for his thesis in the form of signs, testimony of those who encounter Jesus, Jesus’s self-identification, and Jesus’s relationships to others. Chapters seven and eight show how the author uses theatrically-patterned dialogues and triadic discourses to convey Jesus’s identity and mission. Finally, chapters nine through eleven provide important hints that the author gives for his thesis: Jesus’s appeals to time, the indirect use of seven as the number of completeness, and invocation of parentage in pointing to salvation. Through diving into the Gospel, readers will discover the richness of John’s argument, the Jesus he portrays, and the God Jesus reveals. The book aims to stimulate commitment, challenge mind and spirit, and encourage further study and conversation. (shrink)

I provide an exposition and critique of the ecological ethics of Murray Bookchin. First, I show how Bookchin draws on ecology and evolutionary biology to produce a mutually constraining cluster of ethical guidelines to underpin and justify his vision of a nonhierarchical, ecological society. I then critically examine Bookchin’s method of justification and the normative consequences that flow from his position. I argue that Bookchin’s enticing promise that his ecological ethics offers the widest realm of freedom to all life forms (...) is undermined by the way in which he distinguishes and privileges second nature over first nature. I conclude that Bookchin’s promise can only be delivered by a biocentric philosophy rather than by his own ecological ethics. (shrink)

The Diving Bell and the Butterfly. By Jean‐Dominique Bauby, trans. by Jeremy Leggatt 139 pp. £9.99 cloth.

In this paper, the notion of pearl diving as a metaphor for historical methodology is explored as a possible conceptual contribution to pedagogical thinking and practice. Pearl diving in the thinking of Hannah Arendt and Walter Benjamin refers to a process of bringing to life and coming to terms with a fragmented past, and requires of the thinker a form of Homeric impartiality. This they contrast with the processual and functional modern understanding of historiography, where events and things (...) are subsumed by a causal linearity. According to Arendt and Benjamin, our past cannot be understood as though in one piece, but should rather be engaged as fragmented and crystallised into events—or pearls—which can be retrieved and can help us to illuminate our past and to understand our present. This paper considers what such an approach would entail for pedagogical theory and practice, as well as for the work of the pedagogical thinker and the teacher. (shrink)

Clement of Alexandria’s Quis dives salvetur is the first text of Christian literature expressly devoted to the problem of the relationship between wealth and poverty. Clement’s discourse clarifies how he considers the Scriptures as the basis of all pedagogy, inasmuch as they are normative in themselves and esteemed for the absolute value in them that transcends any contingency related to temporal, cultural, historical or sociological situations. This article offers a study of the reception of the Old Testament and New Testament (...) in Clement’s work, focusing on a particular scriptural text, Mk 10:17-31, that is primary and foundational for all of his thought. (shrink)

In this paper, I will explore the experience of noticing/becoming attentive to something in education. What does it mean to take notice of something in an educational way, and how does something become educationally noteworthy? In order to grasp in more detail the idea of something being noteworthy, I turn to the metaphor of pearl diving – as this appears in the works of Hannah Arendt and Walter Benjamin - and to Martin Wagenschein’s theory of exemplarity. These perspectives helps (...) us to grasp not only the centrality of exemplarism in education. It also helps us to grasp what makes something educationally noteworthy, and how this is connected to attention and formative experiences. From this, we can return to a formulation of what makes some forms of notetaking educational. (shrink)

The popularity of films like Titanic betokens a massive shift in the nature of aesthetic spectatorship in our time. The contemplative, distanced viewer who is able to judge from afar the spectacle before him or her, has been replaced by a more proximate, involved "kinaesthetic" subject whose body is stimulated as much as his or her eye. This is evident not only in mass culture with amusement thrill rides and the return of what has been called the "cinema of attractions"; (...) this new spectator can also be discerned in avant-garde culture, as shown by the Sensation exhibition of Young British Artists which caused such a stir in London and New York. This spectator is especially attracted to simulacral scenes of destruction and catastrophe, in which he or she is virtually immersed. If aesthetic judgement is to be a model for its political counterpart, as has been argued by theorists like Lyotard and Arendt, it cannot do so on the basis of this aesthetics of violent immersion. (shrink)

First, the article illustrates the concept of ‘cultural heritage’ as traditionally meant, namely relying on a historically consolidated narrative. Next, it undertakes a broader conceptual analysis and deals with three distinct issues: (i) the fact that the conceptualizations and uses of heritage largely depend on long lasting dichotomies (e.g., tangible/intangible, natural/cultural); (ii) the way in which cultural backgrounds shape the dynamics of valuing and approaching heritage; (iii) the temporal framing of heritage, which today, in the Anthropocene, also points towards how (...) to deal with a future of uncertainty. Lastly, it introduces the notion of epistemic heritage, (i.e., the existence of multiple cultural ways of knowing), investigating its implications for both how cultural heritage is conceived and the future approached. (shrink)

Considering data concerning the underrepresentation of women in philosophy, I reflect on how it is that discrimination of individuals or of categories of people can take place in this discipline, and on what approaches can be adopted to analyse and contrast the discrimination of women in particular. I consider Louise Antony’s distinction between two different approaches: “Different Voices”, according to which women are discriminated in philosophy because of their difference, and “Perfect Storm”, according to which such discrimination is caused by (...) a combination of independent factors. Accepting Antony’s criticism of the Different Voices approach, I offer a few considerations that hope to supplement the Perfect Storm approach by showing how the factors that combine to cause the discrimination of women in philosophy are interconnected. In so doing, I discuss the normative role of gender stereotypes, the role of care-giving in society and its place in our value system, and women’s difficult path towards the indispensable condition of being autonomous subjects and agents. (shrink)

This article is a report on ongoing field research and the exponential growth of the environment in which sex workers, prostitutes, call girls, and escorts operate. We look at the complexity of the conditions of such work and consider the socio-psychological and media vectors that make up the context from which its actors and stereotypes emerge. With the explosion of websites offering virtual or real sex, there is also a continuation of oppressive and violent male practices in this sector, restricting (...) the freedom of choice for women who work professionally in this field. These practices reproduce the power relations and the exclusion that has always been present in society, and are also now more diffuse as virtual reality has come to play an important role in social practice. (shrink)

In 2003, the Combined Code emphasised two important aspects of Board contribution: the importance of induction for newly appointed Public Limited Company board members, and appropriate training and development for all directors serving on a PLC board and its delegated committees, including the Audit and Remuneration Committees. This paper explores the principles of good induction and re-induction programmes for boards of directors and trustees, and its conclusions draw on the author's previous research on non-executive contribution and her recent experience of (...) reviewing board and committee performance and effectiveness through Boardroom Review. (shrink)

Literary Nonfiction. Memoir. Brockelman's book is a loving tribute to his philosopher father as well as an artful exploration of various important philosophical issues that are relevant to everyday life, such as the nature of religious belief, the definition of a good life, and the challenge of facing our own mortality. Anyone who has ever wondered how should I live, or am I living an honest and worthy life? should read this book.

Name der Zeitschrift: Byzantinische Zeitschrift Jahrgang: 108 Heft: 1 Seiten: 53-62.

In this paper, I will explore the experience of noticing/becoming attentive to something in education. What does it mean to take notice of something in an educational way, and how does some...

For three decades, scholars have investigated the phenomena of organizational misconduct (OM) in the fields of business ethics, management, and organization studies. In recent years, the construct has gained increased attention due to widely reported corruption, bribery, crime, violations, and other acts of immorality undertaken by organizations, especially in emerging markets. Despite its popularity, review studies on OM are sparse, and no systematic review of research on OM in the context of emerging markets exists. This article attempts to fill this (...) void by analyzing the literature on OM in the specific context of emerging markets based on a systematic review methodology and integration approach. Based on the findings of our literature review, we develop an integrative model of the antecedents and consequences of OM in emerging markets and discuss important moderators that may curtail the development of OM and alleviate its consequences. In doing so, we provide scholars with a conceptual model and overview of the current knowledge and findings on the topic. We further discuss important gaps in the literature and provide fruitful avenues for future work that we believe are promising to advance our understanding of OM in the context of emerging markets. (shrink)

Charles Carlini interviews Nathan Salmón about the philosophical work of his mentor and friend, the late Saul Kripke, one of the foremost philosophers of the 20th Century.

This is the first book on diving to progress beyond the beginner's stage. although open to the beginner, it will come into full use in the hands of the advanced performer and his coach. A careful balance is maintained between encouraging the instinctive response and encouraging the diver to act in accordance with basic physical principles that are instilled so deeply they become second nature to him.The author abjures the folklore of traditional diving instruction in favor of an (...) approach solidly based on the science of mechanics. Such concepts as the moment of inertia and the conservation of angular momentum are simply and graphically explained. This is by no means empty scientific bravado -- in giving the diver a genuine knowledge of why certain motions produce certain results, the book will impart more confidence than a mere set of precepts telling him what to do.All the main groups of dives are covered in separate chapters. The "saving of dives," an essential development of modern diving, is treated, and there is a chapter on the judging of diving. The book is profusely illustrated with drawings and photographs, including for the first time stroboscopic movie action shots of current National and Olympic champions. (shrink)

This paper examines how Japanese leading politicians cope with the communication problems posed during televised political interviews. Based on data gathered during the year 2012 equivocation, thereby to also assess the significance of these talk shows in the broader context of political communication in Japan.