I attempt a reconstruction of Kant’s version of the causal theory of time that makes it appear coherent. Two problems are at issue. The first concerns Kant’s reference to reciprocal causal influence for characterizing simultaneity. This approach is criticized by pointing out that Kant’s procedure involves simultaneous counterdirected processes—which seems to run into circularity. The problem can be defused by drawing on instantaneous processes such as the propagation of gravitation in Newtonian mechanics. Another charge of circularity against Kant’s causal theory (...) was leveled by Schopenhauer. His objection was that Kant’s approach is invalidated by the failure to deliver non-temporal criteria for distinguishing between causes and effects. I try to show that the modern causal account has made important progress toward a successful resolution of this difficulty. The fork asymmetry, as based on Reichenbach’s principle of the common cause, provides a means for the distinction between cause and effect that is not based on temporal order.Author Keywords: Kant; Causal theory of time; Anisotropy of time; Fork asymmetry; Principle of the common cause; Screening off. (shrink)

There are a variety of interpretations of Manet's Un Bar auxFolies Bergères, but there is no genuinely neutral standpoint from which to judge their seemingly opposed accounts. T. J. Clark's analysis involves placing the work in the context of critical commentary by the artist's contemporaries, and examining the exact place and role of the mirror. Just as Manet painted two versions of the picture, so Clark has published two analyses of it; and just as we can ask whether the artist (...) thus resolved the ambiguities of his first image, so an analogous question can be asked about Clark's commentaries. When we have two such pictures or texts, how do we understand their relationship? Perhaps the best way is to find a further commentary. A Lacanian interpretation is proposed. We may see in the picture a triangular structure of perception; between the gaze and the subject stands the screen on which the image is cast. This view, even more speculative than Clark's, offers a new suggestive way of grasping the relation between picture and texts interpreting it. (shrink)

Individual differences in effortful control, a component of temperament, reflecting the ability to use attention and other cognitive processes to self-regulate emotion and behavior, contribute to child academic adjustment, social competence, and wellbeing. Research has linked excessive screen time in early childhood to reduced self-regulation ability. Furthermore, research suggests that parents are more likely to use screens with children who have more challenging temperaments, such as low levels of effortful control. Since screen time by children between the ages of 0 (...) and 18 has increased during the COVID-19 pandemic, it remains timely to investigate the developmental pattern of association between child screen media use and effortful control. We hypothesize that higher levels of screen media intake at age 3.5 will be associated with lower effortful control at age 4.5 and that lower effortful control at 3.5 will contribute to more screen media intake at age 4.5. This study draws on participants followed longitudinally over the span of 2-years for an investigation of Canadian preschoolers’ screen media use during the pandemic. A follow-up with this sample was completed in 2021. Analyses using a cross-lagged panel model revealed stability in child screen time and effortful control between the ages of 3.5 and 4.5. Child screen time at age 3.5 significantly contributed to decreased effortful control scores at the age of 4.5, whereas effortful control at age 3.5 did not contribute to screen time at age 4.5. Our results partially confirmed our hypothesis and indicated that higher levels of screen time intake were detrimental to the development of effortful control. These results suggest that screen media use, an exceedingly frequent activity, may play an enduring role in development by shaping young children’s temperaments. (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)

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)

Preconception expanded carrier screening (PECS) informs prospective parents about the risk of conceiving a child with a heritable genetic condition. PECS will also, for many, become an important screening test, and websites will likely play a vital role in providing information on this practice. The aim of this article is to examine rationalities in the information on PECS on Dutch websites. The method used is multimodal critical discourse analysis. This method allows an examination of norms and assumptions (...) in the descriptions, as well as of the positions that are discursively made available. The data consist of publicly available material on websites from two genetics departments in the Netherlands. In the results, we present the three main discourses and subject positions that were identified: risk and the couple as possible mediators of severe conditions; the focus on scientific facts and rational conceivers; and severity of the conditions and the responsible couple. In this study, we highlight the importance of acknowledging the interrelation between epistemology and ethics in the discourse on PECS. Finally, it is claimed that the focus on scientific facts in information on PECS risks making existential and ethical dilemmas and choices invisible. (shrink)

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)

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)

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)

A recent study by Castellani et al. (JAMA 302(23):2573–2579, 2009) describes the population-level effects of the choices of individuals who underwent molecular carrier screening for cystic fibrosis (CF) in Veneto, in the northeastern part of Italy, between 1993 and 2007. We discuss some of the ethical issues raised by the policies and individual choices that are the subject of this study. In particular, (1) we discuss the ethical issues raised by the acquisition of genetic information through antenatal (...) class='Hi'>carrier testing; (2) we consider whether by choosing to procreate naturally these couples can harm the resulting child and/or other members of society, and what the moral implications of such harm would be; (3) we consider whether by choosing to avoid natural procreation carrier couples can harm current or future individuals affected by cystic fibrosis; (4) we discuss whether programs that make carrier testing available can be considered eugenic programs. (shrink)

Definition of the problem The present article focuses on the current international ethical debate on “responsible implementation” of expanded carrier screening to public healthcare systems. Expanded carrier screening is a novel genetic test which aims to provide information to couples about whether both partners carry a genetic variation for the same recessively inherited condition. It was introduced to the market by commercial laboratories in the U.S. in 2010; since about 2015, however, international debates have emerged on (...) how and why to offer the screening as a public health service. Arguments It is shown that, initially, enhancement of couples’ reproductive autonomy, not prevention of recessive disorders, has been established as the ethically well-founded aim and guiding principle of responsible implementation. Recently, however, in 2019, three well-known Dutch bioethicists argued that this aim has been embraced without much reflection and should therefore be replaced with the guiding principle of “responsible parenthood”. According to the latter, autonomous reproductive decision-making of couples or women is morally acceptable solely when carrier screening is done only during pregnancy. Before pregnancy, by contrast, couples are held to have a moral duty to take preventive measures if their future children are at risk of being affected by one of the “worst” recessive conditions. In the present paper, both of these conflicting ethical framings of expanded carrier screening are critically examined. Conclusions While the aim of reproductive autonomy also has problematic aspects, the notion of “responsible parenthood” is much more objectionable since it challenges voluntary participation in carrier screening, argues for directive genetic counseling, limits reproductive self-determination of women and couples, and introduces dubious concepts to the debate. (shrink)

Endeavors have been made to found and incorporate ethical values in most aspects of healthcare, including health technology assessment. Health technologies and their assessment are value-laden and could trigger problems with dissemination if they contradict societal norms. Per WHO definition, preconception expanded carrier screening is a new health technology that warrants assessment. It is a genetic test offered to couples who have no known risk of recessive genetic diseases and are interested pregnancy. A test may screen for (...) class='Hi'>carrier status of several autosomal recessive diseases and X-linked at one go. The technique has been piloted in the Netherlands and is discussed in other countries. The aim of the study was to examine values and value conflicts that healthcare experts recounted in relation to the discussion of implementation and use of preconception ECS in Sweden. We interviewed ten experts, who were associated with influencing health policymaking in Sweden. We employed systematizing expert interviews, which endeavor to access experts’ specialist knowledge. There were four female and six male informants, of which four were physicians, three bioethicists, one a legal expert, one a theologian and one a political party representative in the parliament. The participants functioned as members of two non-governmental bodies and three governmental organizations. We employed thematic analysis to identify themes, categories and subcategories. Two main themes surfaced: values and value conflicts. The main categories of Respect for persons, Solidarity, Human dignity, Do no harm, Health and Love formed the first theme, while values conflicting with autonomy and integrity respectively, constituted the second theme. Concepts relating to respect for persons were the most commonly mentioned among the participants, followed by notions alluding to solidarity. Furthermore, respondents discussed values conflicting with Swedish healthcare ones such as equality and solidarity. The experts highlighted values and concepts that are distinctive of welfare states such as Sweden and delineated how preconception ECS could challenge such values. Moreover, the analysis revealed that certain values were deemed more substantive than others, judging by the extent and detail of inference; for example, respect for persons and solidarity were on top of the list. (shrink)

BackgroundCarrier screening is generally performed with the aim of identifying healthy couples at risk of having a child affected with a monogenic disorder to provide them with reproductive options. Expanded carrier screening, which provides the opportunity for multiple conditions to be screened in one test, offers a more cost-effective and comprehensive option than screening for single disorders. However, implementation of ECS at a population level would have implications for genetic counseling practice.MethodsWe conducted semi-structured interviews with sixteen (...) European clinical and molecular geneticists with expertise in carrier screening to explore their views on the implementation of ECS in the clinical setting.ResultsUsing inductive content analysis, we identified content categories relevant to the pre- and post-test settings. Participants believed ECS would ideally be targeted at couples before pregnancy. There was some disagreement regarding the acceptability of performing ECS in individuals, with several participants actively opposing individual-based screening. In addition, participants discussed the importance of ensuring informed and voluntary participation in ECS, recommending measures to minimize external pressure on prospective parents to undergo testing. A need for adequate counseling to foster informed, autonomous reproductive decision-making and provide support for couples found to be at risk was emphasized.ConclusionsPractical challenges in optimizing pre-test education and post-test counseling should not be underestimated and they should be carefully addressed before implementing ECS in the clinical setting. (shrink)

In 2013, the U.S. National Institutes of Health funded four large interdisciplinary research projects exploring the “implications, challenges and opportunities associated with the possible use of g...

I agree with Dive et al. (2023) “that generating and reporting information about genetic variants beyond the scope of the screening program usually lacks clinical, and perhaps personal, utility” an...

The main value of carrier detection in the general population is to determine reproductive risks. In this manuscript I examine the practice of providing carrier screening programs in the school setting. While the data show that high school screening programs can achieve high uptake, I argue that this may reflect a lack of full understanding about risks, benefits, and alternatives, and the right not to know. It may also reflect the inherent coercion in group testing, particularly (...) for adolescents who are prone to peer pressure. The problem of carrier screening in the schools is compounded when the condition has a predilection for certain groups based on race, ethnicity or religion. I examine programs around the world that seek to test high school students for Tay Sachs and Cystic Fibrosis carrier status. I argue that carrier programs should be designed so as to minimize stigma and to allow individuals to refuse. The mandatory school environment cannot achieve this. Rather, I conclude that screening programs should be designed to attract young adults and not adolescents to participate in a more voluntary venue. (shrink)

Spinal muscular atrophy (SMA) is the most common genetic disease that causes infant mortality. Its treatment and prevention represent the paradigmatic example of the ethical dilemmas of 21st‐century medicine. New therapies (nusinersen and AVXS‐101) hold the promise of being able to treat, but not cure, the condition. Alternatively, genomic analysis could identify carriers, and carriers could be offered in vitro fertilization and preimplantation genetic diagnosis. In the future, gene editing could prevent the condition at the embryonic stage. How should these (...) different options be evaluated and compared within a health system? In this paper, we discuss the ethical considerations that bear on the question of how to prioritize the different treatments and preventive options for SMA, at a policy level. We argue that despite the tremendous value of what we call ‘ex‐post’ approaches to treating SMA (such as using pharmacological agents or gene therapy), there is a moral imperative to pursue ‘ex‐ante’ interventions (such as carrier screening in combination with prenatal testing and preimplantation genetic diagnosis, or gene editing) to reduce the incidence of SMA. There are moral reasons relating to autonomy, beneficence and justice to prioritize ex‐ante methods over ex‐post methods. (shrink)

In their recent article, Dive, Holmes, and Newson (2023) argue that genetic information should be reported in accordance with the aims of reproductive genetic carrier screening (RGCS). Referring to...

This chapter contains sections titled: Information Management: Confidentiality, Autonomy and Non‐Directiveness Predictive Genetic Testing Childhood Genetic Testing Genetic Screening Informed Consent to Screening Newborn Screening Carrier Screening Prenatal Screening Susceptibility Screening Further Information Management Goals of Genetic Screening: Public Health vs Individual Choice Conclusion References Further reading.

Analysis and comparison of genetic screening programs shows that the extent of development of programs varies widely across Europe. Regional variations are due not only to genetic disease patterns but also reflect the novelty of genetic services. In most countries, the focus for genetic screening programs has been pregnant women and newborn children. Newborn children are screened only for disorders which are treatable. Prenatal screening when provided is for conditions for which termination may be offered. The only (...) population screening programs for adults are those for thalassaemia carrier status in Cyprus, Greece and Italy. Social responses to genetic screening range from acceptance to hostility. There is a fundamental tension between individual and communi ty in the debates in various European countries about implementation of screening programs. Opposition to genetic screening is frequently expressed in terms of arguments about "eugenics" with insufficient regard to the meaning of the term and its implications. Only a few countries have introduced explicit legislation on genetic screening. Legislation to address discrimination may provide more safeguards than legislation protecting genetic information itself. (shrink)

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)

In lieu of an abstract, here is a brief excerpt of the content:Genetic Testing and Genetic ScreeningPat Milmoe McCarrick (bio)In recent years there has been an enormous expansion in the knowledge that may be gleaned from the testing of an individual's genetic material to predict present or future disability or disease either for oneself or one's offspring. The Human Genome Project, which is currently mapping the entire human gene system, is identifying progressively more genetic sequencing information (see Scope Note 17, (...) The Human Genome Project). Information obtained from genetic testing raises ethical and legal questions about its uses by society. The ethical dilemmas were foreseen two decades ago by bioethicists who asked whether questionable applications could stop "legitimate pursuits" (IV, Gaylin 1972) and whether genetic disease might come to be viewed as "transmissible" in the sense of being contagious (IV, Veatch 1974).Not only has knowledge expanded, but the practice of genetic testing and screening has greatly increased as well. For example, in the case of testing for cystic fibrosis (CF), the U.S. Congress' Office of Technology Assessment (OTA) estimates that instances of screening jumped from 9310 tests in 1991 to 63,000 tests in 1992 (I, OTA [Cystic Fibrosis] 1992). In addition, the OTA estimates that within the next few years, the six million women who become pregnant each year routinely will be informed of available CF carrier tests (I, OTA [Cystic Fibrosis] 1992).Following the recent identification of a gene linked to breast cancer, Dr. Francis Sellers Collins, director of the National Center for Human Genome Research, said that "it is not inconceivable that every woman in America may want to be screened for this gene. The economic, ethical, and counseling issues will be very daunting." Dr. Collins opines that in the near future physical examinations for 18-year-olds will include DNA testing for diseases with genetic components and that physicians, in the interests of preventive medicine, will make risk-based recommendations for a healthy life-style (IV, Breo 1993). The U.S. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research predicted as early as 1983 that before the end of the century genetic screening and counseling would become major components of both public health and individual medical care (I, U.S. President's Commission 1983). [End Page 333]The OTA defines genetic testing as "the use of specific assays to determine the genetic status of individuals already suspected to be at high risk for a particular inherited condition. The terms genetic test, genetic assay, and genetic analysis are used interchangeably to mean the actual laboratory examination of samples." In contrast, genetic screening usually uses the same assays employed for genetic testing but is distinguished from genetic testing by its target population (I, OTA [Genetic Monitoring] 1990). The National Academy of Sciences (NAS) defines screening as the systematic search of populations for persons with latent, early, or asymptomatic disease (III, NAS 1975). Some of the literature annotated for this Scope Note appears to use the terms "testing" and "screening" interchangeably.Philip Boyle of the Hastings Center points out that the language used to describe genetic variation is important and asks what words should be used: "Defects, flaws, deleterious genes, disorders, or the more neutral conditions? Using words such as normal—and its corollary, abnormal—is likely to foster stigmatization and discrimination" (III, Genetic Grammar, Boyle 1992).Areas of focus in genetic testing include: prenatal diagnosis, newborn screening, carrier screening, forensic screening, and susceptibility screening.Prenatal diagnosis discerns whether a fetus is at risk for various identifiable genetic diseases or traits. Prenatal diagnosis is made using amniotic fluid, fetal cells, and fetal or maternal blood cells obtained during amniocentesis testing; alpha fetoprotein assays or chorionic villus sampling; or ultrasound tomography, which creates fetal images on a screen. Another method, known as fetoscopy, uses a camera on a needle inserted in the uterus to view the fetus. Since prenatal screening began in 1966 (I, U.S. President's Commission 1983), the number of metabolic defects and genetic disorders that can be diagnosed prenatally has expanded greatly. There is also discussion of requiring testing for parents who are participating in an in vitro fertilization program and are at genetic... (shrink)

The ArgumentAdvances in genetic research make it possible to identify carriers of a growing number of genetic diseases. The World Health Organization published several preconditions for community carrier screening. This paper aims to present some of the dilemmas about screening in Israel and the difficulties in following the WHO's helpful criteria.

. Science at the interface with society is regarded with mistrust among parts of the public. Scientific judgments on matters of practical concern are not infrequently suspected of being incompetent and biased. I discuss two proposals for remedying this deficiency. The first aims at strengthening the independence of science and suggests increasing the distance to political and economic powers. The drawback is that this runs the risk of locking science in an academic ivory tower. The second proposal favors “counter-politicization” in (...) that research is strongly focused on projects “in the public interest,” that is, on projects whose expected results will benefit all those concerned by these results. The disadvantage is that the future use of research findings cannot be delineated reliably in advance. I argue that the underlying problem is the perceived lack of relevance and reliability and that pluralism is an important step toward its solution. Pluralism serves to stimulate a more inclusive research agenda and strengthens the well-testedness of scientific approaches. However, pluralism also prevents the emergence of clear-cut practical suggestions. Accordingly, pluralism is part of the solution to the credibility crisis of science, but also part of the problem. In order for science to be suitable as a guide for practice, the leeway of scientific options needs to be narrowed – in spite of uncertainty in epistemic respect. This reduction can be achieved by appeal to criteria that do not focus on the epistemic credentials of the suggestions but on their appropriateness in practical respect. (shrink)

This paper reassesses Robert Koch’s work on tropical infections of humans and cattle as being inspired by an underlying interest in epidemiology. Such an interest was developed from the early 1890s when it became clear that an exclusive focus on pathogens was insufficient as an approach to explain the genesis and dynamics of epidemics. Koch, who had failed to do so before, now highlighted differences between infection and disease and described the role of various sub-clinical states of disease in the (...) propagation and—consequently—in the control of epidemics. Studying pathologies of men and cattle in tropical countries eventually facilitated the application of such measures in Europe through the screening of healthy carriers of typhoid, which was carried out in 1902. The concept of the carrier state can be understood as a spin-off from tropical medicine into the study and control of infectious disease in Europe. With it travelled assumptions that were typical for colonial and veterinary medicine where the health of indigenous individuals or cattle would be a secondary objective compared to the control of diseases in populations. (shrink)

Background: Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results. Methods: To inform policy on disclosure of infant sickle cell disorder (SCD) carrier results, a mixed-methods study of healthcare providers was conducted in Ontario, Canada, to understand (...) attitudes regarding result management using a cross-sectional survey (N = 1615) and semistructured interviews (N = 42). Results: Agreement to reasons favouring disclosure of SCD carrier results was high (65.1%–92.7%) and to reasons opposing disclosure was low (4.1%–18.1%). Genetics professionals expressed less support for arguments favouring disclosure (35.3%–78.8%), and more agreement with arguments opposing disclosure (15.7%–51.9%). A slim majority of genetics professionals (51.9%) agreed that a reason to avoid disclosure was the importance of allowing the child to decide to receive results. Qualitatively, there was a perceived “duty” to disclose, that if the clinician possessed the information, the clinician could not withhold it. Discussion: While a majority of respondents perceived a duty to disclose the incidental results of newborn screening, the policy implications of these attitudes are not obvious. In particular, policy must balance descriptive ethics (ie, what providers believe) and normative ethics (ie, what duty-based principles oblige), address dissenting opinion and consider the relevance of moral principles grounded in clinical obligations for public health initiatives. (shrink)

As rapid advances in human genetic research are transferred into new areas of genetic technology, questions relatingto the use of these techniques will escalate. This paper examines some of the policy concerns surrounding recent developments in genetic screening. It discusses the impetus and implications of genetic screening in general, examines various applications, and analyzes the costs and benefits of screening programs currently in existence. Special emphasis is placed on whether or not screening should be considered a (...) matter of public health and mandated on those grounds. This paper argues against any compulsory screening programs except where the disease is easily identified, applicable across social groups, and treatable. While screening services for carriers of genetic disease and prenatal diagnosis should be made available and education programs should be expanded substantially, the burden of proof for involuntary programs is placed on the proponents. There is little public health justification at thb time for mandatory screening though this does not preclude future public health demands. It is argued that the goals and justification of various human genetic technologies must be examined at this time due to the rapid advancement of the research as well as the ultimate benefits promised for humankind. CiteULike Connotea Del.icio.us What's this? (shrink)

Definition of the problem: The development of molecular genetics has provided tools not only for the diagnosis of genetic diseases and disease dispositions in affected individuals, but also for the detection of healthy carriers of recessive hereditary traits. The resulting, ethically controversial option of genetic population screening used to be restricted to a small number of rather rare diseases by methodological limitations which are now about to be overcome.

In recent years, as newborn screening has expanded to include conditions for which treatment is questionable, new rationales for screening have proliferated. One such rationale is the potential reproductive benefit to parents from the detection of a genetic condition or carrier status in infants. An unanticipated consequence of invoking knowledge of reproductive risk as a major benefit of screening has been to open newborn screening to the charge that it constitutes state‐sanctioned eugenics. Thus, an endeavor (...) that had been viewed as the converse of state programs of selective breeding has come to be seen in some quarters as yet another of its incarnations. The result has been serious and self‐inflected harm to the reputation of newborn screening programs. (shrink)

International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research practice (...) locally, and contribute to policy more widely, this study aimed to explore the views of local residents in Kilifi County in coastal Kenya on how researchers should manage study-generated information on sickle cell disease and carrier status. (shrink)

The concept of totalitarianism was particularly prevalent in intellectual and political debate in Germany in the 1970s, and was motivated largely by anti-totalitarian convictions. Although it did not enter everyday language, it persists in political rhetoric, where it is used today as a political football in speeches and constitutional reports. In response to historical approaches to the concept of totalitarianism, which generally contextualise the term and put forward alternative terms, this article probes the meaning of this term as it is (...) actually used and misused in political and educational contexts in contemporary Germany. It concludes by highlighting the fictitious (figurative, semantic and epistemological) dimensions of the rhetoric of anti-totalitarianism, and calls for a more genuinely liberal, non-totalitarian, posture. (shrink)

This article questions the effectiveness of “engagement teaching” when dealing with controversial subjects by exploring the role of fear in contemporary education about the Holocaust in the United Kingdom. It begins by assessing a governmental report about education and a series of related press reports and chain emails, whose assumption that secondary school teachers are afraid of teaching controversial subjects (in particular the Holocaust) triggered an international scandal about Holocaust education in the UK in April 2007. The author argues that (...) three forms of respectful fear or deference are undermined in Holocaust teaching: epistemological (towards historical knowledge); political (towards curricula); and intergenerational (towards teachers). The article further demonstrates that the object of fear expressed by journalists and the public was not the Holocaust itself, but the reversal of deferential relations between teachers and pupils in the school classroom and the supposition that we may not learn from history. Whereas history education is held up by policy-makers as a safeguard of social stability and of the transmission of values, the application of “engagement teaching” to controversial subjects may in fact undermine the authority of historical education and the enlightenment principles on which it is founded. (shrink)

Ah, emojis ☺. Some enthusiastically speak of them as a new universal language. In 2015, the Oxford English dictionary crowned one of them as its word of the year. Sixty million are exchanged daily on Facebook. Along with emoticons and various other smileys, emojis are now part of daily communications. Visual add-ons or superscript, they are meant to indicate intent or add emotions to written messages, which do not benefit from the tone or body language of the interlocutor. As such, (...) they present themselves as tools for clarification, but one can wonder if they do not, too, introduce uncertainty in language. Aimed at barristers as well as jurilinguists, this paper seeks to underline some design and perception biases that can hinder communication, with a focus on rules of evidence and legal methodology. Empirically rooted in Canadian case law, the findings resonate in other jurisdictions, as emojis, indeed, are a global phenomenon. (shrink)

We examined the affective consequences of everyday attention lapses and memory failures. Significant associations were found between self-report measures of attention lapses , attention-related cognitive errors , and memory failures , on the one hand, and boredom and depression , on the other. Regression analyses confirmed previous findings that the ARCES partially mediates the relation between the MAAS-LO and MFS. Further regression analyses also indicated that the association between the ARCES and BPS was entirely accounted for by the MAAS-LO and (...) MFS, as was that between the ARCES and BDI-II. Structural modeling revealed the associations to be optimally explained by the MAAS-LO and MFS influencing the BPS and BDI-II, contrary to current conceptions of attention and memory problems as consequences of affective dysfunction. A lack of conscious awareness of one’s actions, signaled by the propensity to experience brief lapses of attention and related memory failures, is thus seen as having significant consequences in terms of long-term affective well-being. (shrink)

Bd. 1. A-B -- Bd. 2. C-F -- Bd. 3. G-Inn -- Bd. 4. Ins-Loc.

Although significant literature and jurisprudence has amassed on rights-based climate litigation over recent years, less research and case law has emerged on poverty-related court cases and the fulfilment of economic, social, and cultural rights (ESCR) in Canada. Fewer still are studies exploring the interlinkages between these areas of inquiry. The purpose of this paper is to explore, using Canada as a case study, rights-based developments in climate litigation cases and how these could impact the innovative advancement of ESCR (e.g. to (...) food, housing and water). Typically, issues of justiciability and standing emerge, impeding the realization of such rights. Given the grave threats we now face, climate cases and social movements must be brought together to better hold state actors accountable for their rights obligations. We implore the legal community to explore ways to traverse juridical obstacles to realize the interdependencies of human rights and protect the planet from calamitous climate change. (shrink)

United Nations (UN) leaders suggest that the world is not on track to meet the Sustainable Development Goals (SDGs) by 2030. The purpose of this paper is to explore whether the SDGs provide a valuable platform to call for a basic income (BI) globally. Adopting a critical historical studies approach, the article traces the evolution of ‘development’, including the UN decades of development, the Millennium Development Goals, and the SDGs. It subsequently describes the structural adjustment and poverty reduction efforts by (...) the World Bank and International Monetary Fund, and then outlines why the SDG framework may be helpful in advancing a BI. We argue that as climate-related disasters increase, a BI will be vital in providing a modicum of security in an increasingly unstable world. Calls for BI must be anchored to a broader change agenda that recognizes the causes of poverty and income inequality, and seeks their dismantling and redress. (shrink)

My intention is to cast light on the characteristics of epistemic or fundamental research (in contrast to application-oriented research). I contrast a Baconian notion of objectivity, expressing a correspondence of the views of scientists to the facts, with a pluralist notion, involving a critical debate between conflicting approaches. These conflicts include substantive hypotheses or theories but extend to values as well. I claim that a plurality of epistemic values serves to accomplish a non-Baconian form of objectivity that is apt to (...) preserve most of the intuitions tied to the objectivity of science. For instance, pluralism is the only way to cope with the challenge of preference bias. Furthermore, the plurality of epistemic values cannot be substantially reduced by exploring the empirical success of scientific theories distinguished in light of particular such values. However, in addition to pluralism at the level of theories and value-commitments alike, scientific research is also characterized by a joint striving for consensus which I trace back to a shared epistemic attitude. This attitude manifests itself, e.g., in the willingness of scientists to subject their claims to empirical scrutiny and to respect rational argument. This shared epistemic attitude is embodied in rules adopted by the scientific community concerning general principles of dealing with knowledge claims. My contention is that pluralism and consensus formation can be brought into harmony by placing them at different levels of consideration: at the level of scientific reasoning and at the level of social conventions regarding how to deal with claims put forward within the scientific community. (shrink)

I address options for providing scientific policy advice and explore the relation between scientific knowledge and political, economic and moral values. I argue that such nonepistemic values are essential for establishing the significance of questions and the relevance of evidence, while, on the other hand, such social choices are the prerogative of society. This tension can be resolved by recognizing social values and identifying them as separate premises or as commissions while withholding commitment to them, and by elaborating a plurality (...) of policy packages that envisage the implementation of different social goals. There are limits to upholding the value-free ideal in scientific research. But by following the mentioned strategy, science can give useful policy advice by leaving the value-free ideal largely intact. Such scientific restraint avoids the risk of appearing to illegitimately impose values on the public and could make the advice given more trustworthy. (shrink)