Predictive genetic testing is now routinely offered to asymptomatic adults at risk for genetic disease. However, testing of minors at risk for adult-onset conditions, where no treatment or preventive intervention exists, has evoked greater controversy and inspired a debate spanning two decades. This review aims to provide a detailed longitudinal analysis and concludes by examining the debate's current status and prospects for the future. Fifty-three relevant theoretical papers published between 1990 and December 2010 were identified, and interpretative content analysis was (...) employed to catalogue discrete arguments within these papers. Novel conclusions were drawn from this review. While the debate's first voices were raised in opposition of testing and their arguments have retained currency over many years, arguments in favour of testing, which appeared sporadically at first, have gained momentum more recently. Most arguments on both sides are testable empirical claims, so far untested, rather than abstract ethical or philosophical positions. The dispute, therein, lies not so much in whether minors should be permitted to access predictive genetic testing but whether these empirical claims on the relative benefits or harms of testing should be assessed. (shrink)

In this issue of Journal of Medical Ethics, Pugh1 offers a pluralist justice-based argument in support of the spirit, if not the precise letter, of the UK approach to the use of genetic test results to underwrite life insurance. We agree with Dr Pugh’s general contention that there is ethical and philosophical support for curtailment of insurers’ access to, and use of, applicants’ GTR in underwriting. However, we disagree with the contention that broad revisionary implications of certain theories of justice (...) render them unpersuasive. In fact, despite the competing theories, the United Nations Universal Declaration on the Human Genome and Human Rights has already made a clear statement on this issue. Article 6 of the Declaration,2 unanimously adopted in 1997 by 77 countries, along with a resolution for its implementation,3 states, ‘No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.’ Further, Article 25 of the UN Convention on the Rights of Persons with Disabilities prohibits discrimination against persons with disabilities in the provision of life insurance. These statements are not contingent on the acceptability of the degree of revisionary implications. They are clear, unambiguous statements about the obligations of signatory countries. Despite this, few countries have taken steps commensurate with this expectation, possibly due to the scale of changes required for proper ratification. However, genetic discrimination is recognised as one …. (shrink)

A case is described of a man who discovered years after donating sperm for artificial insemination, that he had a serious genetic disease, autosomal dominant cerebellar ataxia (ADCA). This manifests itself only years after puberty and occurs in 50% of the progeny. The sperm had been used for the conception of 18 children in 13 women. The parents were only told three years after the insemination. This long time interval was unavoidable since many of the parents had to be found (...) and the hospital director wished first to discuss the matter with his legal advisors and other experts.In future, in agreement with the new law only 10 inseminations will take place with sperm from one donor. This will reduce still further the availability of donor sperm. (shrink)

The scope of noninvasive prenatal testing (NIPT) could expand in the future to include detailed analysis of the fetal genome. This will allow for the testing for virtually any trait with a genetic contribution, including “non-medical” traits. Here we discuss the potential use of NIPT for these traits. We outline a scenario which highlights possible inconsistencies with ethical decision-making. We then discuss the case against permitting these uses. The objections include practical problems; increasing inequities; increasing the burden of choice; negative (...) impacts on the child, family, and society; and issues with implementation. We then outline the case for permitting the use of NIPT for these traits. These include arguments for reproductive liberty and autonomy; questioning the labeling of traits as “non-medical”; and the principle of procreative beneficence. This summary of the case for and against can serve as a basis for the development of a consistent and coherent ethical framework. (shrink)

The scope of noninvasive prenatal testing (NIPT) could expand in the future to include detailed analysis of the fetal genome. This will allow for the testing for virtually any trait with a genetic contribution, including “non-medical” traits. Here we discuss the potential use of NIPT for these traits. We outline a scenario which highlights possible inconsistencies with ethical decision-making. We then discuss the case against permitting these uses. The objections include practical problems; increasing inequities; increasing the burden of choice; negative (...) impacts on the child, family, and society; and issues with implementation. We then outline the case for permitting the use of NIPT for these traits. These include arguments for reproductive liberty and autonomy; questioning the labeling of traits as “non-medical”; and the principle of procreative beneficence. This summary of the case for and against can serve as a basis for the development of a consistent and coherent ethical framework. (shrink)

Non-invasive prenatal testing is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21. However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is (...) limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems. (shrink)

BackgroundThe use of genetic test results in risk-rated insurance is a significant concern internationally, with many countries banning or restricting the use of genetic test results in underwriting. In Australia, life insurers’ use of genetic test results is legal and self-regulated by the insurance industry (Financial Services Council (FSC)). In 2018, an Australian Parliamentary Inquiry recommended that insurers’ use of genetic test results in underwriting should be prohibited. In 2019, the FSC introduced an industry self-regulated moratorium on the use of (...) genetic test results. In the absence of government oversight, it is critical that the impact, effectiveness and appropriateness of the moratorium is monitored. Here we describe the protocol of our government-funded research project, which will serve that critical function between 2020 and 2023.MethodsA realist evaluation framework was developed for the project, using a context-mechanism-outcome (CMO) approach, to systematically assess the impact of the moratorium for a range of stakeholders. Outcomes which need to be achieved for the moratorium to accomplish its intended aims were identified, and specific data collection measures methods were developed to gather the evidence from relevant stakeholder groups (consumers, health professionals, financial industry and genetic research community) to determine if aims are achieved. Results from each arm of the study will be analysed and published in peer-reviewed journals as they become available.DiscussionThe A-GLIMMER project will provide essential monitoring of the impact and effectiveness of the self-regulated insurance moratorium. On completion of the study (3 years) a Stakeholder Report will be compiled. The Stakeholder Report will synthesise the evidence gathered in each arm of the study and use the CMO framework to evaluate the extent to which each of the outcomes have been achieved, and make evidence-based recommendations to the Australian federal government, life insurance industry and other stakeholders. (shrink)

Background: Increasing use of genetic technologies in clinical and research settings increases the potential for misattributed paternity to be identified. Yet existing guidance from the President's Commission for the Study of Ethical Problems in Biomedical and Behavioral Research and the Institute of Medicine (among others) offers contradictory advice. Genetic health professionals are thus likely to vary in their practice when misattributed paternity is identified, and empirical investigation into the disclosure of misattributed paternity is scarce. Given the relevance of this ethical (...) dilemma and its significance to users of genetic services, this study aimed to investigate the attitudes of lay people with regard to the disclosure of misattributed paternity. Methods: An online questionnaire was hosted and advertised through Amazon's Mechanical Turk to 200 United States residents aged 18 years or older. Respondents were asked to rate (via a Likert scale) the ethical permissibility of possible actions a clinician may carry out when misattributed paternity is identified. Data analysis consisted of preliminary descriptive analysis, chi-squared analysis, and Wilcoxon signed-rank tests. Results: There was no clear majority support for many of the options surveyed across different contexts, with only six out of ten scenarios displaying some general consensus. Men were more likely to support scenarios where the father is informed of paternity. Importantly, participants' views varied according to whether the desires of the father were previously expressed, suggesting that perceptions of the permissibility of a clinician's action will depend on the interests of all parties affected. Conclusions: This sample of the general public showed attitudes that were, at least to some degree, at variance with some professional guidelines. We give arguments for why at least some of these attitudes might be justified. We argue that case-specific judgments should be made and outline some of the relevant ethical considerations. While general guidelines ought to be considered, context-specific moral judgments cannot be avoided. (shrink)

This article re-evaluates the role of the manuscript tradition of the Historia Augusta in debates over the original contents and authorship of the text. Evidence for physical disruptions to the text before our oldest surviving manuscripts points to an earlier manuscript distributed across multiple codices. A multi-volume archetype eliminates critical arguments against the author's claims about lives missing before the Life of Hadrian as well as in the lacuna for the years a.d. 244–260. Other multi-volume codices of the eighth and (...) ninth centuries show that loss of an initial volume would have disrupted the textual tradition for the index, titles and authorial attributions. Comparison of our most complete early witness, Pal. lat. 899, to the independent branches of the textual tradition shows discrepancies between these paratextual elements as expected in a disrupted tradition. Ultimately, this article concludes that the current debates on authorship and the original scope of the Historia Augusta rest on paratextual elements from a single branch of the manuscript tradition, raising doubts about the centrality of these controversies to understanding the work. (shrink)

En el presente trabajo, utilizaremos el concepto althusseriano de problemática para repensar al estructuralismo. Nuestra pregunta será: ¿cómo comprender al estructuralismo? ¿Cómo indicar sus límites cuando se trató de un conjunto de propuestas teóricas que atravesó disciplinas, que sufrió cruces con diversas teorías y cuyas premisas nunca fueron establecidas con claridad? A partir del concepto de problemática, desarrollado por Althusser fundamentalmente en La revolución teórica de Marx, se nos abrirá la posibilidad de interrogar al conjunto de propuestas teóricas que lo (...) conformaron, no tanto como un canon aplicable a las más diversas materias sino como un espacio teórico atravesado por contradicciones. Así, nos apoyaremos en la noción de problemática porque la consideramos particularmente fértil para pensar un campo teórico más como un conjunto de problemas y preguntas que como un compendio de respuestas a dificultades teóricas claramente delimitadas.Pretendemos destacar las contradicciones que vertebran al estructuralismo porque nos conducirán a plantear que es posible emplazar una distancia en su interior, distancia que mostrará como una de sus variantes aquella que afirma la imposibilidad de pensar una estructura de estructuras final que las totalice a todas. Este hecho es el que nos pondrá delante cómo las tensiones internas del estructuralismo permiten mostrar el modo en que algunas de sus propuestas balizan el camino del posestructuralismo. (shrink)

The Routledge International Handbook of Neuroaesthetics is an authoritative reference work that provides the reader with a wide-ranging introduction to this exciting new scientific discipline. The book brings together leading international academics to offer a well-balanced overview of this burgeoning field while addressing two questions central to the field; how the brain computes aesthetic appreciation for sensory objects, and how is art created and experienced.

Journal of Political Philosophy, EarlyView.

Checklists have been used to improve quality in many industries, including healthcare. The use of checklists, however, has not been extensively evaluated in clinical ethics consultation. This article seeks to fill this gap by exploring the efficacy of using a checklist in ethics consultation, as tested by an empirical investigation of the use of the checklist at a large academic medical system (Cleveland Clinic). The specific aims of this project are as follows: (1) to improve the quality of ethics consultations (...) by providing reminders to ethics consultants about process steps that are important for most patient-centered ethics consultations, (2) to create consistency in the ethics consultation process across the medical system, and (3) to establish an effective educational tool for trainers and trainees in clinical ethics consultation. The checklist was developed after a thorough literature review and an iterative process of revising and testing by a group of experienced ethics consultants. To pilot test the checklist, it was distributed to 46 ethics consultants. After a six-month pilot period in which ethics professionals used the checklist during their clinical activities, a survey was distributed to all of those who used the checklist. The 10-item survey examined consultants’ perceptions regarding the three aims listed above. Of the 25 survey respondents, 11 self-reported as experts in ethics consultation, nine perceived themselves to have mid-level expertise, and five self-reported as novices. The majority (68 percent) of all respondents, regardless of expertise, believed that the checklist could be a “helpful” or “very helpful” tool in the consultation process generally. Novices were more likely than experts to believe that the checklist would be useful in conducting consultations. The limitations of this study include: reduced generalizability given that this project was conducted at one medical system, utilized a small sample size, and used self-reported quality outcome measures. Despite these limitations, to the authors’ knowledge this is the first investigatation of the use of a checklist systematically to improve quality in ethics consultation. Importantly, our findings shed light on ways this checklist can be used to improve ethics consultation, including its use as an educational tool. The authors hope to test the checklist with consultants in other healthcare systems to explore its usefulness in different healthcare environments. (shrink)

In this paper I explore some ideas inspired by Federico Picinali’s Justice In-Between: A Study of Intermediate Criminal Verdicts. Picinali makes a case for the introduction of intermediate options in criminal trials – verdicts with consequences that are harsher than an acquittal, but not so harsh as a conviction. From a certain perspective, the absence of intermediate options in criminal trials is puzzling – out of kilter with much of our everyday decision-making and, perhaps, with the recommendations of expected utility (...) theory. I will argue, however, that the lack of intermediate options is much less puzzling when put in the context of our ordinary practices of blame and non-legal punishment. (shrink)

For regular sets in Euclidean space, previous work has identified twelve ‘basic’ computability notions to which many previous notions considered in literature were shown to be equivalent. With respect to those basic notions we now investigate on the computability of natural operations on regular sets: union, intersection, complement, convex hull, image, and pre-image under suitable classes of functions. It turns out that only few of these notions are suitable in the sense of rendering all those operations uniformly computable.

We congratulate Fox and her colleagues (2007) for contributing to the published empirical literature on ethics consultation in United States hospitals. Their study demonstrates the continued wide v...

The history of the Euclidean Steiner tree problem, which is the problem of constructing a shortest possible network interconnecting a set of given points in the Euclidean plane, goes back to Gergonne in the early nineteenth century. We present a detailed account of the mathematical contributions of some of the earliest papers on the Euclidean Steiner tree problem. Furthermore, we link these initial contributions with results from the recent literature on the problem.

Recognize the “philo- sophia ” as such, this side of Postmodernism, means, starting from the surprising studies of Heribert Boeder, see it as a thought epochally built on a Wisdom, that is, on a initial Knowledge about the Destiny of Man. For the philo-sophical thought of the so-called “German Idealism”, that Wisdom is neither that of the Muses, as in the First epoch, neither the “Christian sapientia”, as in the Middle epoch, but the “Civil Consciousness” about Duty and Freedom.

The vast majority of research in nursing ethics over the last decade indicates that nurses may not be fully prepared to ‘deliver the good’ for their patients, or to contribute appropriately in the wider current health care climate. When suitable research projects were evaluated for this article, one key question emerged: if nurses are educationally better prepared than ever before to exercise their ethical decision-making skills, why does research still indicate that the expected practice-based improvements remain elusive? Hence, a number (...) of ideas gleaned from recent research about the current nature of nursing ethics, and especially teaching nursing ethics to student nurses, are analysed and critiqued in this article, which concludes with a cluster of ideas and conclusions based on that analysis. It is hoped that such a review may serve as a catalyst for nurse educators to re-examine their teaching practices with a view to enhancing good nursing practice through educational means. (shrink)

I propose a novel way to understand the stringency of Kant’s conception of beneficence. This novel understanding can ground our intuition that we do not have to forego (almost) all pursuit of our personal ends. I argue that we should understand the application of imperfect duties to specific cases according to the framework set by the adoption and promotion of ends. Agents have other ends than obligatory ones and they must weigh obligatory ends against these other ends. Obligatory ends are (...) special among ends only insofar as their adoption is not optional. My reading of the normative status of imperfect duties affords a way of thinking about beneficence modelled on the everyday ways in which agents pursue their personal projects and weigh different ends against each other. This establishes a middle-ground between an extremely demanding conception of beneficence and an overly latitudinarian one. Furthermore, it helps us understand why we do not have to be maximally beneficent and why there is a bias towards the near in our thinking about rescue cases. (shrink)

This chapter examines the traditional understanding of Horkheimer and Adorno's dialectic of enlightenment (exemplified by Jürgen Habermas and others), arguing that the traditional reading – with its stress on instrumental rationalization and a regressive or self‐destructive history – misses Horkheimer and Adorno's deepest aspirations, which are to offer an argument against a particular conceptualization of human agency (as apperceptive). Stressing instead, that Kant is the central interlocutor, the chapter shows how understanding this Kantian inheritance allows us to bring into focus (...) the radical nature of Horkheimer and Adorno's argument: that it is meant to bring into focus the problematic nature of conceiving human agency as dependent on apperception. In presenting this problem, the chapter shows how the ontogenetic origin of self‐consciousness becomes a crucial issue, and the thought of Sigmund Freud is marshaled both to make this clear and to show how Horkheimer and Adorno's account can benefit from making explicit its potential debt to Freud. (shrink)

The paper defends the permissibility of paying inducements to research subjects against objections not covered in an earlier paper in Bioethics. The objections are that inducements would cause inequity, crowd out research, and undesirably commercialize the researcher‐subject relationship. The paper shows how these objections presuppose implausible factual and/or normative claims. The final position reached is a qualified defence of freedom of contract which not only supports the permissibility of inducements but also offers guidance to ethics committees in dealing with practical (...) problems that might arise if inducements are offered. (shrink)

This article elaborates Theodor W. Adorno’s understanding of ‘negation’ and ‘negative theology.’ It proceeds by introducing a typology of negation within modern philosophy roughly from Descartes onwards, showing how Adorno both fits and also stands out in this typology. Ultimately, it is argued that Adorno’s approach to negation and thereby to negative theology is throughout distinguished and infused by an ethical commitment.