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...

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)

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)

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)

Scientists, Engineers, Technocrats, Academicians, and Researchers have a vital role to play in the process of emergence of new theories, models, systems, and technologies. They also have a responsibility to harness these for common good and strive to prevent their possible ill effects in the era of rapid growth in technologies. ICM2ST-10 will play a significant role in generating awareness about the potential and the limitations of new technologies, concepts, theories, and trends. The chief objective of ICM2ST-10 is to bring (...) together experts from industries, academia, R&D institutions and other user communities on a common platform to discuss and share their expertise and experiences. (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)

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)

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...

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...

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)

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)

Real life applications and case studies -- Commmunication and computing systems -- Mobile and ubiquitous computing -- Electrical and electronics systems -- Green computing and e-waste minimizations -- Image processing and applications -- Material science & technology -- Wired and wireless networks.

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)

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

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...

In the face of environmental crises such as climate change, pollution and biodiversity loss—which all adversely impact on health—Gils-Schmidt and Salloch explore whether physicians can be justified in taking climate issues into account in clinical care.1 While their approach centres on the ‘climate-sensitive’ decisions, physicians can carry out on the micro-level of clinical decision-making, they encourage further discussions on how climate-related issues can be included across different levels of decision-making in healthcare. We propose a list of tasks and a model (...) to assist with navigating the range of factors and structural elements an environmentally sensitive ethics must address. Stephen Gardiner’s notion of a perfect moral storm is central to understanding these issues.2 Gardiner describes how a perfect moral storm occurs in the centre of three overlapping conditions for human action and policymaking in the face of climate change. This storm is driven by: (1) a lack of interest among current generations to meet global needs and accommodate the well-being of future generations, (2) a lack of ecological concerns for other parts of nature than humans and (3) weak ethical and political theories and institutions shaping policy decisions on issues with severe implications across borders and generations. Moreover, these conditions are embedded in the existing, complex world of ethically unjustified power imbalances and social injustice. The growing awareness of healthcare’s climate footprint has amplified and accelerated global, grassroots action to make healthcare more environmentally friendly. This includes incorporating environmental impacts into quality improvement methodologies, building communities of practice to explore how to make …. (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)

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

The present paper is an attempt to develop late Professor K. Satchidananda Murty’s quest to articulate Immanent and Transcendent in his philosophical journey from Upanishads to German idealism and Marxism. It is proposed to be achieved by explicating Murty’s understanding of the views of Kant, Hegel, Feuerbach, and Marx on human condition and its transcendence or emancipation. For this purpose, I will discuss consciousness as the ultimate reality being transcendent and immanent in Vedanta as well as in German idealism. The (...) ambition and challenge of the present article is to pursue Murty’s cross-cultural perspective to the extent that the ideas of thinkers of very different traditions, especially culturally and intellectually distinct traditions, are contested on the fullness of thought concerning immanent and transcendent as is evident in comparing Sankara, Kant, and Hegel on consciousness in relation to Buddha and Marx on suffering and alienation. Whereas Murty refers to them, from cross-cultural perspective, with limited end to substantiate his position on the “realm between” derived from Upanishads and Vedanta infused with Buddhism, I wish to present, from the same perspective, some clarifications, annotations, and summations from German idealism and Marxism, which may be useful for expanding Murty’s preliminary acquaintance with them. I wish to argue that though there is antithetical nature of these perspectives, yet the distinctions between immanent and transcendent have been one of the fundamental conceptual linkages under different cultural background. (shrink)

Summary Liberals, from Mill to Rawls see personal autonomy as paramount in civil society. They see human dignity to consist essentially in personal autonomy, that is, ?in the ability of each person to determine for himself or herself a view of the good life? (Taylor, C. (1992) p. 27). Multiculturalism and ?The Politics of Recognition? p. 57 (Princeton, Princeton University Press). This emphasis on personal autonomy underlies much of liberal emphasis on freedom of conscience, justice, rights and fairness. Its core (...) thesis is that a just society seeks not to promote any particular view of the good life, but enables its citizens to pursue their own ends consistent with a similar liberty for all others. Yet, when some citizens in America attempted to pursue their own view of the good life, they came up against head?on conflict with the liberal state. These groups saw civic education with its emphasis on individual choice, on reflecting and weighing of alternative viewpoints and on personal autonomy, as threatening to their way of life and to their fundamental religious beliefs, and consequently they challenged the state in the courts. What ensued raised profound educational problems for educating children, parental rights, and the right of the State in a liberal democratic society, which are discussed in this paper. (shrink)

_The first part called the Preamble tackles: (a) the issues of silence and speech, and life and disease; (b) whether we need to know some or all of the truth, and how are exact science and philosophical reason related; (c) the phenomenon of Why, How, and What; (d) how are mind and brain related; (e) what is robust eclecticism, empirical/scientific enquiry, replicability/refutability, and the role of diagnosis and medical model in psychiatry; (f) bioethics and the four principles of beneficence, non-malfeasance, (...) autonomy, and justice; (g) the four concepts of disease, illness, sickness, and disorder; how confusion is confounded by these concepts but clarity is imperative if we want to make sense out of them; and how psychiatry is an interim medical discipline. The second part called The Issues deals with: (a) the concepts of nature and nurture; the biological and the psychosocial; and psychiatric disease and brain pathophysiology; (b) biology, Freud and the reinvention of psychiatry; (c) critics of psychiatry, mind-body problem and paradigm shifts in psychiatry; (d) the biological, the psychoanalytic, the psychosocial and the cognitive; (e) the issues of clarity, reductionism, and integration; (f) what are the fool-proof criteria, which are false leads, and what is the need for questioning assumptions in psychiatry. The third part is called Psychiatric Disorder, Psychiatric Ethics, and Psychiatry Connected Disciplines. It includes topics like (a) psychiatric disorder, mental health, and mental phenomena; (b) issues in psychiatric ethics; (c) social psychiatry, liaison psychiatry, psychosomatic medicine, forensic psychiatry, and neuropsychiatry. The fourth part is called Antipsychiatry, Blunting Creativity, etc. It includes topics like (a) antipsychiatry revisited; (b) basic arguments of antipsychiatry, Szasz, etc.; (c) psychiatric classification and value judgment; (d) conformity, labeling, and blunting creativity. The fifth part is called The Role of Philosophy, Religion, and Spirituality in Psychiatry. It includes topics like (a) relevance of philosophy to psychiatry; (b) psychiatry, religion, spirituality, and culture; (c) ancient Indian concepts and contemporary psychiatry; (d) Indian holism and Western reductionism; (e) science, humanism, and the nomothetic-idiographic orientation. The last part, called Final Goal, talks of the need for a grand unified theory. The whole discussion is put in the form of refutable points._. (shrink)