The authors of the paper ‘Advance euthanasia directives: a controversial case and its ethical implications’ articulate concerns and reasons with regard to the conduct of euthanasia in persons with dementia based on advance directives. While we agree on the conclusion that there needs to be more attention for such directives in the preparation phase, we disagree with the reasons provided by the authors to support their conclusions. We will outline two concerns with their reasoning by drawing on empirical research and (...) by providing reasons that contradict their assumptions about competence of people with dementia and the importance of happiness in reasoning about advance directives of people with dementia. We will draw attention to the important normative questions that have been overstepped in their paper, and we will outline why further research is required. (shrink)

BackgroundOur human societies and certainly also (bio) medicine are more and more permeated with technology. There seems to be an increasing awareness among bioethicists that an effective and comprehensive approach to ethically guide these emerging biomedical innovations into society is needed. Such an approach has not been spelled out yet for bioethics, while there are frequent calls for ethical guidance of biomedical innovation, also by biomedical researchers themselves. New and emerging biotechnologies require anticipation of possible effects and implications, meaning the (...) scope is not evaluative after a technology has been fully developed or about hypothetical technologies, but real-time for a real biotechnology.Main textIn this paper we aim to substantiate and discuss six ingredients that we increasingly see adopted by ethicists and that together constitute “ethics parallel research”. This approach allows to fulfil two aims: guiding the development process of technologies in biomedicine and providing input for the normative evaluation of such technologies. The six ingredients of ethics parallel research are: (1) disentangling wicked problems, (2) upstream or midstream ethical analysis, (3) ethics from within, (4) inclusion of empirical research, (5) public participation and (6) mapping societal impacts, including hard and soft impacts. We will draw on gene editing, organoid technology and artificial intelligence as examples to illustrate these six ingredients.ConclusionEthics parallel research brings together these ingredients to ethically analyse and proactively or parallel guide technological development. It widens the roles and judgements from the ethicist to a more anticipatory and constructively guiding role. Ethics parallel research is characterised by a constructive, rather than a purely critical perspective, it focusses on developing best-practices rather than outlining worst practice, and draws on insights from social sciences and philosophy of technology. (shrink)

With the increasing attention paid to patient participation in both health care policy-making and health care research, McCoy and colleagues (2020) point to a key ethical issue, namely the quest fo...

BackgroundGene drive technologies (GDTs) promote the rapid spread of a particular genetic element within a population of non-human organisms. Potential applications of GDTs include the control of insect vectors, invasive species and agricultural pests. Whether, and if so, under what conditions, GDTs should be deployed is hotly debated. Although broad stances in this debate have been described, the convictions that inform the moral views of the experts shaping these technologies and related policies have not been examined in depth in the (...) academic literature.MethodsIn this qualitative study, we interviewed GDT experts (n = 33) from different disciplines to identify and better understand their moral views regarding these technologies. The pseudonymized transcripts were analyzed thematically.ResultsThe respondents’ moral views were principally influenced by their attitudes towards (1) the uncertainty related to GDTs; (2) the alternatives to which they should be compared; and (3) the role humans should have in nature. Respondents agreed there is epistemic uncertainty related to GDTs, identified similar knowledge gaps, and stressed the importance of realistic expectations in discussions on GDTs. They disagreed about whether uncertainty provides a rationale to refrain from field trials (‘risks of intervention’ stance) or to proceed with phased testing to obtain more knowledge given the harms of the status quo (‘risks of non-intervention’ stance). With regards to alternatives to tackle vector-borne diseases, invasive species and agricultural pests, respondents disagreed about which alternatives should be considered (un)feasible and (in)sufficiently explored: conventional strategies (‘downstream solutions’ stance) or systematic changes to health care, political and agricultural systems (‘upstream solutions’ stance). Finally, respondents held different views on nature and whether the use of GDTs is compatible with humans’ role in nature (‘interference’ stance) or not (‘non-interference stance’).ConclusionsThis interview study helps to disentangle the debate on GDTs by providing a better understanding of the moral views of GDT experts. The obtained insights provide valuable stepping-stones for a constructive debate about underlying value conflicts and call attention to topics that deserve further (normative) reflection. Further evaluation of these issues can facilitate the debate on and responsible development of GDTs. (shrink)

Mobile health is rapidly being implemented and changing our ways of doing, understanding and organising healthcare. mHealth includes wearable devices as well as apps that track fitness, offer wellness programmes or provide tools to manage chronic conditions. According to industry and policy makers, these systems offer efficient and cost-effective solutions for disease prevention and self-management. While this development raises many ethically relevant questions, so far mHealth has received only little attention in medical ethics. This paper provides an overview of bioethical (...) issues raised by mHealth and aims to draw scholarly attention to the ethical significance of its promises and challenges. We show that the overly positive promises of mHealth need to be nuanced and their desirability critically assessed. Finally, we offer suggestions to bioethicists to engage with this emerging trend in healthcare to develop mHealth to its best potential in a morally sound way. (shrink)

In recent years, exposome research has been put forward as the next frontier for the study of human health and disease. Exposome research entails the analysis of the totality of environmental exposures and their corresponding biological responses within the human body. Increasingly, this is operationalized by big-data approaches to map the effects of internal as well as external exposures using smart sensors and multiomics technologies. However, the ethical implications of exposome research are still only rarely discussed in the literature. Therefore, (...) we conducted a systematic review of the academic literature regarding both the exposome and underlying research fields and approaches, to map the ethical aspects that are relevant to exposome research. We identify five ethical themes that are prominent in ethics discussions: the goals of exposome research, its standards, its tools, how it relates to study participants, and the consequences of its products. Furthermore, we provide a number of general principles for how future ethics research can best make use of our comprehensive overview of the ethical aspects of exposome research. Lastly, we highlight three aspects of exposome research that are most in need of ethical reflection: the actionability of its findings, the epidemiological or clinical norms applicable to exposome research, and the meaning and action–implications of bias. (shrink)

In the aftermath of shocking workplace scandals, people are often baffled when individuals within the organization were aware of clear-cut wrongdoing yet did not inform authorities. The current research suggests that moral concern for the suffering that a transgressor might face if a crime were reported is an under-recognized, powerful force that shapes whistleblowing in organizations, particularly when transgressors are fellow members of a highly entitative group. Two experiments show that group entitativity heightens concern about possible consequences that the transgressor (...) would face if a crime were to be reported, and that this concern reduces the likelihood of reporting wrongdoing in organizations to authorities. Further, the studies identify a mechanism through which concern about the transgressor is heightened in highly entitative groups: potential reporters perceive that the transgressor felt remorse for their crime. Thus, when fellow members of highly entitative organizations commit crimes, people are more likely to imagine that these transgressors felt anxiety or guilt about their actions, and this prompts greater concern for transgressors in ways that encourage people to let them “off the hook.” We discuss the implications of these findings for how reporting to authorities can be encouraged within highly entitative organizations. (shrink)

Exposome research is put forward as a major tool for solving the nature-versus-nurture debate because the exposome is said to represent “the nature of nurture.” Against this influential idea, we argue that the adoption of the nature-versus-nurture debate into the exposome research program is a mistake that needs to be undone to allow for a proper bioethical assessment of exposome research. We first argue that this adoption is originally based on an equivocation between the traditional nature-versus-nurture debate and a debate (...) about disease prediction/etiology. Second, due to this mistake, exposome research is pushed to adopt a limited conception of agential control that is harmful to one's thinking about the good that exposome research can do for human health and wellbeing. To fully excise the nature-versus-nurture debate from exposome research, we argue that exposome researchers and bioethicists need to think about the exposome afresh from the perspective of actionability. We define the concept of actionability and related concepts and show how these can be used to analyze the ethical aspects of the exposome. In particular, we focus on refuting the popular “gun analogy” in exposome research, returning results to study participants and risk-taking in the context of a well-lived life. (shrink)

Autonomy of people on the autism-spectrum has only been very rarely conceptually explored. Autism spectrum is commonly considered a hetereogenous disorder, and typically described as a behaviorally-defined neurodevelopmental disorder associated with the presence of social-communication deficits and restricted and repetitive behaviors. Autism research mainly focuses on the behavior of autistic people and ways to teach them skills that are in line with social norms. Interventions such as therapies are being justified with the assumption that autists lack the capacity to be (...) self-reflective and to be “author of their lives”. We question this assumption, as some empirical research shows that autists are aware of their strengths and are critical about social norms, we take this as a starting point to reconsider the beliefs about autistic people’s capacities. As a theoretical framework, we draw on Berlin’s idea of positive and negative liberty as he clearly distinguishes between one’s own developed preferences and the simple absence of interference. By drawing on the concept of positive liberty, we illustrate that a lot of autists are aware of their own needs, and usually do not deny their own needs, values and interests. This makes them less prone than non-autistic people to adapt their preferences to external influences, which might be seen as sticking to an authentic way of living. Our analysis shows that many autists are hindered to be autonomous due to unjustified interference, unreflected assumptions about their self-determination, or by paternalistic actions. These observations contribute to a better understanding when help and interference are justified and a more differentiated understanding of autonomy of autistic people. (shrink)

It may soon become possible not just to replace, but to re-grow healthy tissues after injury or disease, because of innovations in the field of Regenerative Medicine. One particularly promising innovation is a regenerative valve implant to treat people with heart valve disease. These implants are fabricated from so-called ‘smart’, ‘lifelike’ materials. Implanted inside a heart, these implants stimulate re-growth of a healthy, living heart valve. While the technological development advances, the ethical implications of this new technology are still unclear (...) and a clear conceptual understanding of the notions ‘smart' and ‘lifelike' is currently lacking. In this paper, we explore the conceptual and ethical implications of the development of smart lifelike materials for the design of regenerative implants, by analysing heart valve implants as a showcase. In our conceptual analysis, we show that the materials are considered ‘smart’ because they can communicate with human tissues, and ‘lifelike’ because they are structurally similar to these tissues. This shows that regenerative valve implants become intimately integrated in the living tissues of the human body. As such, they manifest the ontological entanglement of body and technology. In our ethical analysis, we argue this is ethically significant in at least two ways: It exacerbates the irreversibility of the implantation procedure, and it might affect the embodied experience of the implant recipient. With our conceptual and ethical analysis, we aim to contribute to responsible development of smart lifelike materials and regenerative implants. (shrink)

Liao and Carbonell discuss the role of (supposed) racial differences and racism in two medical devices: pulse oximeters and spirometers. They show that what might seem like cases of mere bias, are...

Regenerative Medicine promises to develop treatments to regrow healthy tissues and cure the physical body. One of the emerging developments within this field is regenerative implants, such as jawbone or heart valve implants, that can be broken down by the body and are gradually replaced with living tissue. Yet challenges for embodiment are to be expected, given that the implants are designed to integrate deeply into the tissue of the living body, so that implant and body become one. In this (...) paper, we explore how regenerative implants may affect the embodied experience of implant recipients. To this end, we take a phenomenological approach. First, we explore what insights the existing phenomenological and empirical literature on embodiment offers regarding the experience of illness and of living with regular (non-regenerative) implants and organ transplants. Second, we apply these insights to better understand how future implant recipients might experience living with regenerative implants. Third, we conclude that concepts and considerations from the existing phenomenological literature do not sufficiently address what it might be like to live with an implantable technology that, over time, becomes one with the living body. We argue that the interwovenness and intimate relationship of people living with regenerative implants should be understood in terms of ‘entanglement’. Entanglement allows us to explore the complexities of human-technology relations, acknowledging the inseparability of humans and implantable technologies. Our theoretical foundations regarding the role of embodiment may be tested empirically once more people will be living with regenerative implants. (shrink)

Precision medicine research involving human biological material is becoming an increasingly central component of healthcare, and its potential is quickly growing due to rapid technological progress...

In this article it will be concluded that systematic menstrual tracking in women’s sport has the potential to cause harm to athletes. Since the ruling of Dobbs v. Jackson Women’s Health Organization (2022) in the United States, concerns regarding menstrual health tracking have arisen. Research suggests that the menstrual tracking of female athletes presents potential risks to “women’s autonomy, privacy, and safety in sport” (Casto 2022, 1725). At present, the repercussions of systematic menstrual tracking are particularly under-scrutinized, and this paper (...) seeks to combine novel research in the sport sciences with present ethical debates in the philosophy of sports. Utilizing Beauvoir’s feminist philosophy (2011), this paper argues that systematic menstrual tracking may contribute to the wider system of women’s oppression by exploiting female athletes, as well as enabling the internalization of submissive behaviour in cultures where athletes are expected to comply unquestioningly. Five policy recommendations are made concerning autonomy, informed consent, education, safeguarding and data access. The overall findings of this paper propose that a more in-depth understanding of the links between data, privacy, and the menstrual cycle are required by sports organizations and governing bodies if athletes are to be protected in a future where systematic menstrual tracking is inevitable. (shrink)

Volume 19, Issue 5, May 2019, Page 43-45.

The introduction of chatGPT illustrates the rapid developments within Conversational Artificial Intelligence (CAI) technologies (Gordijn and Have 2023). Ethical reflection and analysis of CAI are c...

The rise of precision medicine has led to an unprecedented focus on human biological material in biomedical research. In addition, rapid advances in stem cell technology, regenerative medicine and synthetic biology are leading to more complex human tissue structures and new applications with tremendous potential for medicine. While promising, these developments also raise several ethical and practical challenges which have been the subject of extensive academic debate. These debates have led to increasing calls for longitudinal governance arrangements between tissue providers (...) and biobanks that go beyond the initial moment of obtaining consent, such as closer involvement of tissue providers in what happens to their tissue, and more active participatory approaches to the governance of biobanks. However, in spite of these calls, such measures are being adopted slowly in practice, and there remains a strong tendency to focus on the consent procedure as the tool for addressing the ethical challenges of contemporary biobanking. In this paper, we argue that one of the barriers to this transition is the dominant language pervading the field of human tissue research, in which the provision of tissue is phrased as a ‘donation’ or ‘gift’, and tissue providers are referred to as ‘donors’. Because of the performative qualities of language, the effect of using ‘donation’ and ‘donor’ shapes a professional culture in which biobank participants are perceived as passive providers of tissue free from further considerations or entitlements. This hampers the kind of participatory approaches to governance that are deemed necessary to adequately address the ethical challenges currently faced in human tissue research. Rather than reinforcing this idea through language, we need to pave the way for the kind of participatory approaches to governance that are being extensively argued for by starting with the appropriate terminology. (shrink)

Despite widespread and worldwide efforts to eradicate vector-borne diseases such as malaria, these diseases continue to have an enormous negative impact on public health. For this reason, scientists are working on novel control strategies, such as gene drive technologies (GDTs). As GDT research advances, researchers are contemplating the potential next step of conducting field trials. An important point of discussion regarding these field trials relates to who should be informed, consulted, and involved in decision-making about their design and launch. It (...) is generally argued that community members have a particularly strong claim to be engaged, and yet, disagreement and lack of clarity exist about how this “community” should be defined and delineated. In this paper, we shed light on this “boundary problem”: the problem of determining how boundaries of inclusion and exclusion in (GDT) community engagement should be drawn. As our analysis demonstrates, the process of defining and delineating a community is itself normative. First, we explicate why it is important to define and delineate the community. Second, we demonstrate that different definitions of community are used and intermingled in the debate on GDTs, and argue in favor of distinguishing geographical, affected, cultural, and political communities. Finally, we propose initial guidance for deciding who should (not) be engaged in decision-making about GDT field trials, by arguing that the definition and delineation of the community should depend on the rationale for engagement and that the characteristics of the community itself can guide the effective design of community engagement strategies. (shrink)

Sankary et al. (2022) report the results of an empirical study on research participant experiences of exiting research at the end of clinical trials of deep-brain-stimulation (DBS) and responsive n...

The dominant conception of educational equality in the United States is meritocratic: an individual's chances of educational achievements should track only talent and effort, not social class or other morally irrelevant factors. The meritocratic conception must presuppose that natural talent and effort can be isolated from social class — and environmental factors in general — if it is to provide guidance in the world of educational policy and practice. In this article Kenneth R. Howe challenges that presupposition and related (...) elements of the meritocratic conception having to do with the role of competition and education as a positional good. Howe argues that, in use, the meritocratic conception unavoidably distributes education based on developed talent and motivation that cannot be isolated from the effects of social class, thus masking the real basis of the distribution and contributing to the perpetuation of illicit group privilege. Howe then entertains and rejects several rejoinders to his critique, including that the meritocratic conception might eliminate the presupposition of isolatable natural talent. Finally, Howe sketches an alternative conception of educational equality based on Elizabeth Anderson's adaptation of Rawls's “democratic equality.”. (shrink)

This book provides an exciting and diverse philosophical exploration of the role of practice and practices in human activity. It contains original essays and critiques of this philosophical and sociological attempt to move beyond current problematic ways of thinking in the humanities and social sciences. It will be useful across many disciplines, including philosophy, sociology, science, cultural theory, history and anthropology.

_Airy Nothings_ contains eleven contributions on the scholarly and literary representations of the Otherworld of Faerie from the Middle Ages to the Enlightenment.

In this article, it will be concluded that the major automotive racing league, Formula 1, is failing in its efforts to be a truly unisex sport. In the current Formula 1 series, there are no female drivers. Although women have never been officially prohibited from competing in Formula 1, there have been fewer than 10 female drivers since its inception. This inquiry focuses on why women drivers have been prevented from securing professional driving positions in Formula 1 and racing on (...) equal terms with men. I argue that there are five major barriers which perpetuate women’s exclusion from this league: historical and current attitudes, assumed physical and mental inferiority, sexualisation, money, and representation and visibility. In this cultural examination, I demonstrate that the situation for women in Formula 1 appears to be bleaker than in other sports that are making progress in their quest for gender equality. However, I also suggest that, despite ethical issues, W Series – a new, women-only, single-seater car racing championship – could potentially motivates positive change for women’s car racing by promoting gender equity through a new league which enables women to improve themselves in a protected category. This article also considers the impact of sex in Formula 1, which is pertinent to the discussion surrounding alleged biological differences. The discussion employs Simone de Beauvoir’s conceptualisation of ‘Otherness’, as well as Helmut Pflugfelder’s account of female embodiment in motorsport. The overall findings are that more focused research is required for gender issues in Formula 1 to be accurately addressed. (shrink)

The ascendant view in the current debate about education science —experimentism— is a reassertion of the randomized experiment as the methodological gold standard. Advocates of this view have ignored, not answered, long‐standing criticisms of the randomized experiment: its frequent impracticality, its lack of external validity, its confinement to a regularity conception of causality, and its externalization of politics. This article rehearses these criticisms and then adumbrates the alternative of experimentalism. In contrast to experimentism, experimentalism is expansive and variegated in its (...) conception of scientific method, seeing methodology as itself an object of experimentation. Experimentalism also includes a central role for intentional causation and self‐consciously incorporates progressive political values. (shrink)

BackgroundThe COVID-19 pandemic has led to the shutdown of society and created sudden and long-lasting changes in teaching practices, forcing many nursing students to study remotely at home. These students’ relatedness with their teachers and peers has been limited and mainly online. Several studies have indicated that students’ emotional states and mental health have been negatively affected by the pandemic, representing a serious challenge for many countries. Because they use only digital tools, online students have perceived a decline in teacher (...) and peer support. Likewise, these students have reported feelings of sadness, loneliness, anxiety, and stress, affecting their learning and competence development.AimsTo investigate the associations between peer support, teacher support, emotional state, and perceived competence in nursing students during the pandemic.MethodsThis cross-sectional study collected quantitative survey data from 329 nursing students at a large university in Norway. Structural equation modeling was used to test seven associations among peer support, teacher support, emotional state, and perceived competence.ResultsTeacher support had a significant direct effect on perceived competence, while peer support almost had a significant direct effect. However, the emotional state was directly affected by peer support and had a direct impact on perceived competence. Hence, teacher and peer support is important to nursing students’ perceived competence.ConclusionDuring the COVID-19 pandemic, both peer and teacher support can significantly support students’ competence development. Therefore, students should utilize the support of their teachers and peers in a structured manner to bolster their competence development. (shrink)

J S Mill used the term ‘dead dogma’ to describe a belief that has gone unquestioned for so long and to such a degree that people have little idea why they accept it or why they continue to believe it. When wives and children were considered chattel, it made sense for the head of a household to have a ‘sovereignal right’ to do as he wished with his property. Now that women and children are considered to have the full complement (...) of human rights and slavery has been abolished, it is no longer acceptable for someone to have a ‘right’ to completely control the life of another human being. Revealingly, parental rights tend to be invoked only when parents want to do something that is arguably not in their child's best interest. Infant male circumcision is a case in point. Instead of parental rights, I claim that parents have an obligation to protect their children's rights as well as to preserve the future options of those children so far as possible. In this essay, it is argued that the notion that parents have a right to make decisions concerning their children's bodies and minds—irrespective of the child's best interests—is a dead dogma. The ramifications of this argument for the circumcision debate are then spelled out and discussed. (shrink)

Clinical judgment has traditionally been left to be acquired chiefly through personal experience and conversations with experienced practitioners. Given the explosion of knowledge and technology of recent years, a more lystematic approach to managing information has become increasingly important. Ethical issues, both of a social and more individual nature, also increasingly demand attention. This paper describes one effort to address these problems through medical education. A three quarter pre-clinical course was revised to incorporate decision analysis and ethical analysis. The approach, (...) results and problems of the two-year-old innovation are discussed, and general recommendations are offered. (shrink)