This paper introduces Bioethics-in-Science (BiS), a novel methodological approach entangling bioethical inquiry directly within scientific practice. Drawing inspiration from Van Rensselaer Potter's original vision of bioethics as a collaborative bridge between biology and ethics, BiS represents a community of practice aimed to contribute to bioethical inquiry in three key ways. First, it reframes the relationship between ethics and science by treating scientific practice as inherently value-laden and recognizing scientists’ relevant ethical expertise. Second, it develops methods–including ethics notebooks, collaborative workshops, and (...) conceptual mapping–that facilitate a shift from mere external evaluation towards continuous ethical deliberation within research environments. Third, it demonstrates how bioethical inquiry can actively contribute to improving scientific practice through the co-creation of knowledge and values. Through case studies from synthetic biology, neurodiversity research, and proteomics, we illustrate how BiS arose from and operates in practice and examine the challenges of crossing disciplinary boundaries. As such, we position BiS as offering a pathway for bioethical inquiry to move beyond its peripheral position vis-à-vis the sciences and engage meaningfully with the normative dimensions of scientific knowledge production instead, ultimately contributing to both better ethics and science. (shrink)

Autism Spectrum Condition presents a challenge to social and relational accounts of the self, precisely because it is broadly seen as a disorder impacting social relationships. Many influential theories argue that social deficits and impairments of the self are the core problems in ASC. Predictive processing approaches address these based on general purpose neurocognitive mechanisms that are expressed atypically. Here we use the High, Inflexible Precision of Prediction Errors in Autism approach in the context of cultural niche construction to explain (...) atypicalities of the relational self, specifically its minimal, extended, and intersubjective aspects. We contend that the social self in ASC should not be seen as impaired, but rather as an outcome of atypical niche construction. We unpack the scientific, ethical, and practical consequences of this view, and discuss implications for how the challenges that autistic persons face should be approached. (shrink)

This special issue aims to explore and investigate a new subfield, namely experimental philosophy of medicine. Whereas experimental philosophy is relatively new on the philosophical block, some of its takes and findings have already shaped central debates in ethics, philosophy of action, philosophy of language, and epistemology. Interestingly, the approach of this program was for a long time almost wholly ignored within bioethics and philosophy of medicine—although this seems to have changed somewhat recently. In this introduction, we briefly sketch the (...) program of experimental philosophy and how it can be used to shed philosophical light on issues in the philosophy of medicine. (shrink)

This chapter describes the field of philosophy of medicine and its methods. We discuss the history and potential of experimental approaches in philosophy of medicine. We give an overview of the chapters in the book.

Psychiatric diagnoses such as Autism Spectrum Disorder (ASD) are primarily attributed on the basis of behavioral criteria. The aim of most of the biomedical research on ASD is to uncover the underlying mechanisms that lead to or even cause pathological behavior. However, in the philosophical and sociological literature, it has been suggested that autism is also to some extent a ‘social construct’ that cannot merely be reduced to its biological explanation. We show that a one-sided adherence to either a biological (...) or a social explanation leads to a moral dilemma, a Catch-22, for autistics and for those living with them. Such explanations close the space for self-identifying as autistic and at the same time being considered to be in good mental health. They foreclose the possibility of making sense of the lived experience of (and with) autistics. In this paper we argue that such lack of space for moral imagination inherently leads to scientific stalemate. We propose that one can only go beyond this stalemate by taking an ethical stance in theorizing, one that enables better intersubjective understanding. Only on such a view can behavior and biology be linked without either disconnecting them or reducing the one to the other. (shrink)

The diagnosis of autism is on the rise. Autistic people, parents, professionals, and policy makers alike face important questions about the right approach toward autism. For example, there are questions about the desirability of early detection, the role and consequences of underlying cognitive theories, and whether autism is a disorder to be treated or an identity to be respected. How does the fact that autism is a heterogeneous concept affect the answers to these questions? Who has the authority or knowledge (...) to speak on behalf of people with autism? In this paper, we describe a cluster of research topics which should be on the agenda of the emerging field of autism ethics. These topics include the very concept of autism itself, the question whether autism is primarily an identity or a disorder, the ethical questions that parents of autistic children face, metaethical questions, the ethical consequences of epistemological questions, and a cluster of questions related to social justice, stigma, and paternalism. (shrink)

This paper proposes using the term “Bioethics-in-Science” (BiS) to denote and delineate a set of emerging methodological approaches entangling bioethical inquiry directly within scientific practice. Drawing inspiration from Van Rensselaer Potter’s original vision of bioethics as a collaborative bridge between biology and ethics, BiS represents a community of practice aiming to contribute to bioethical inquiry in three key ways. First, it reframes the relationship between ethics and science by treating scientific practice as inherently value-laden and recognizing scientists’ relevant ethical expertise. (...) Second, it develops methods—including ethics notebooks, collaborative workshops, and conceptual mapping—which facilitate a shift from mere external evaluation towards continuous ethical deliberation within research environments. Third, it demonstrates how bioethical inquiry can actively contribute to improving scientific practice through the co-creation of knowledge and values. Through case studies from synthetic biology, neurodiversity research, and proteomics, we illustrate how BiS arose from and operates in practice, and examine the challenges of crossing disciplinary boundaries. As such, we position BiS as offering a pathway for bioethical inquiry to move beyond its peripheral position vis-à-vis the sciences and engage meaningfully with the normative dimensions of scientific knowledge production instead, ultimately contributing to both better ethics and science. (shrink)

We explore how the conceptual framework of Tanaka Shōzō’s theories of nagare (flow) and doku (poison) can be used as a lens to analyze systemic toxicity in Academia. We argue that thinking with Tanaka’s framework has the advantage of empowering individuals to take action and instill hope, while also emphasizing the systemic nature of academic toxicity. Tanaka, a 19th-century Japanese politician and environmentalist, developed his ideas in response to industrial pollution from the Ashio copper mine. He emphasized the interconnection between (...) ecological, social, and political dynamics. We argue that his framework provides a perspective for understanding the entrenched issues in Academia, including exploitative labor conditions, toxic leadership, and structural failures in knowledge production. Through two key case studies – academic publishing pressures (“publish or perish”) and problematic conceptions of excellence in research funding – we illustrate how Academia functions as a doku system, sustaining unhealthy flows that undermine both individual well-being and the pursuit of knowledge. Drawing on Tanaka’s insights, we propose a shift towards nagare, advocating for cooperative, ethical, and sustainable academic practices that enable a healthier research ecosystem. (shrink)

Beliefs about the moral status of children have changed significantly in recent decades in the Western world. At the same time, knowledge about likely consequences for children of individual, parental, and societal choices has grown, as has the array of choices that (prospective) parents may have at their disposal. The intersection between these beliefs, this new knowledge, and these new choices has created a minefield of expectations from parents and a seemingly ever-expanding responsibility towards their children. Some of these new (...) challenges have resulted from progress in genetics and neuroscience. It is these challenges that we focus on in this introduction and volume. (shrink)

In September 2020, the surgeon Paulo Macchiarini, who used stem cell technology to enable the transplants of artificial and donor trachea, was charged with aggravated assault in Sweden. In this comment, we argue that the Ethics Council of the Karolinska Institute should have considered issues from philosophy of science when they were brought to their attention, rather than dismiss them as irrelevant to research ethics. We demonstrate how conceptual issues of a philosophy-of-science-kind about clinical research and medical practice should be (...) integral to research ethics. (shrink)

Background Truth-telling in health care is about providing patients with accurate information about their diagnoses and prognoses to enable them to make decisions that can benefit their overall health. Physicians worldwide, especially in the United Kingdom (U.K.) and the United States (U.S.), openly share such medical information. Bangladesh, however, is a Muslim-majority society with different social norms than Western societies. Therefore, we examined whether Muslim culture supports truth disclosure for patients, particularly how and to what extent medical information about life-threatening (...) diseases is provided to patients in Bangladesh. Methods This was a phenomenological qualitative study. We conducted thirty in-depth interviews with clinicians, nurses, patients and their relatives at Shaheed Suhrawardy Medical College Hospital in Dhaka, Bangladesh. We also used observations to explore interactions between patients, families and healthcare professionals regarding their involvement in medical decisions and truth disclosure issues. NVivo software was used to identify common themes, and a thematic analysis method was utilised to analyse the datasets. Results This study identified three recurring themes relevant to the ethics and practice of truth disclosure: best interest rather than autonomy, the ambivalent value of deception and who understands what. The participants revealed that physicians often withhold fatal medical prognoses from terminally ill patients to ensure the best healthcare outcomes. The results indicate that deception towards patients is commonly accepted as a means of reducing burden and providing comfort. The participants opined that true medical information should be withheld from some patients, assuming that such disclosures may create a severe burden on them. Whether or to what extent medical information is disclosed primarily depends on a family’s wishes and preferences. Conclusions While truth disclosure to patients is considered an ethical norm in many cultures, such as in the U.K. and the U.S., the practice of concealing or partially revealing severe medical prognoses to patients is an actual medical practice in Bangladeshi society. This study emphasises the importance of recognising a patient’s active involvement and respecting the cultural values that shape family involvement in medical decision-making. These findings may have significant policy and practical implications for promoting patient autonomy within Bangladeshi family dynamics and religious-based cultural values. (shrink)

In this paper, I review some of the discussions on procreative beneficence and procreative autonomy in the context of postponed motherhood and compare the considerations to the context of advanced paternal age. In doing so, I will give an overview of the main scientific findings with regard to how older age in men affects the health of future offspring. I shall demonstrate how the discrepancy between the media coverage and policies on postponed motherhood and postponed fatherhood mistakenly suggests that women (...) are more responsible than men for the health of offspring. (shrink)

In this paper, we report the results from an experimental reproductive ethics study exploring questions about reproduction and parenthood. The main finding in our study is that, while we may assume that everyone understands these concepts and their relationship in the same way, this assumption may be unwarranted. For example, we may assume that if ‘x is y’s father’, it follows that ‘y is x’s child’. However, the participants in our study did not necessarily agree that it does follow. This (...) means, at the very least, that we need to make sure all parties in a debate have the same relationships in mind when talking about reproduction and parenthood. Moreover, it gives us reason to explore more carefully the conditions which support or undermine the connections between these concepts. This cannot come from purely theoretical reasoning, nor from empirical research alone, but from the alliance between the two. (shrink)

The sources, extent and margins of parental obligations in taking decisions regarding their children’s medical care are subjects of ongoing debates. Balancing children’s immediate welfare with keeping their future open is a delicate task. In this paper, we briefly present two examples of situations in which parents may be confronted with the choice of whether to authorise or demand non-therapeutic interventions on their children for the purpose of fertility preservation. The first example is that of children facing cancer treatment, and (...) the second of children with Klinefelter syndrome. We argue that, whereas decisions of whether to preserve fertility may be prima facie within the limits of parental discretion, the right to an open future does not straightforwardly put parents under an obligation to take actions that would detect or relieve future infertility in their children—and indeed in some cases taking such actions is problematic. (shrink)

This open access collection brings together a team of leading scholars and rising stars to consider what experimental philosophy of medicine is and can be. While experimental philosophy of science is an established field, attempts to tackle issues in philosophy of medicine from an experimental angle are still surprisingly scarce. A team of interdisciplinary scholars demonstrate how we can make progress by integrating a variety of methods from experimental philosophy, including experiments, sociological surveys, simulations, as well as history and philosophy (...) of science, in order to yield meaningful results about the core questions in medicine. They focus on concepts central to philosophy of medicine and medical practice, such as death, pain, disease and disorder, advance directives, medical explanation, disability and informed consent. Presenting empirical findings and providing a crucial foundation for future work in this dynamic field, this collection explores new ways for philosophers to cooperate with scientists and reveals the value of these collaborations for both philosophy and medicine. The eBook editions of this book are available open access under a CC BY-NC-ND 4.0 licence on bloomsburycollections[dot]com. Open access was funded by the European Research Council Starting Grant. (shrink)

Purpose: There is a widespread recognition that biomedical explanations offer benefits to those diagnosed with a mental disorder. Recent research points out that such explanations may nevertheless have stigmatizing effects. In this study, this ‘mixed blessing’ account of biomedical explanations is investigated in a case of philosophical interest: Tourette Syndrome. Method: We conducted a vignette survey with 221 participants in which we first assessed quantitative attributions of blame as well as the desire for social distance for behavior associated with Tourette (...) Syndrome. Results: In our study, it is confirmed that in the case of biomedical explanations, less blame is attributed than in the case of psychosocial explanations. When presented with a mixed explanation stressing an entanglement of biological and psychosocial factors this did not increase blame attribution. The desire for social distance is unaffected by the type of explanation but the participants’ free text feedback indicates this might obfuscate an underlying dilemma between stigma and blame revealed in recent research. Conclusion: There seems to be potential for blame reduction in explanations where biological and psychosocial factors are entangled. However, dynamic, ‘epigenetic’, explanations require further qualitative research to be performed as well as a philosophical framework to account for the ‘mixed blessings’ account. (shrink)

In this paper, we explore the ethical complexities of deep-sea mining and scientific exploration. We focus on the extractivist underpinnings of Western scientific discovery, arguing that the desire to make the unknown known often leads to exploitative practices, jeopardizing fragile ecosystems. Traditional ethical frameworks, which require knowledge of the subjects of moral consideration, are inadequate for reflecting on the scientific exploration of vast unknowns of the deep-sea. Instead we propose an ethics of attunement—a relational approach that emphasizes engagement without extraction. (...) Drawing on examples from art and historical scientific practices, we show non-extractive modes of knowing can inspire ethical scientific exploration. The works of Eugen van Ransonnet and Marianne North exemplify ways of observing ecosystems without disrupting their integrity. The paper further explores the potential of sound as a medium for attunement, leveraging Pauline Oliveros’ Deep Listening concept to advocate for an epistemic humility. We suggest that engaging with art can foster imaginative frameworks necessary for non-extractivist scientific exploration. (shrink)

There has been a spurt in both fundamental and translational research that examines the underlying mechanisms of the human microbiome in psychiatric disorders. The personalized and dynamic features of the human microbiome suggest the potential of its manipulation for precision psychiatry in ways to improve mental health and avoid disease. However, findings in the field of microbiome also raise philosophical and ethical questions. From a philosophical point of view, they may yet be another attempt at providing a biological cause for (...) phenomena that ultimately cannot be so easily localized. From an ethical point of view, it is relevant that the human gut microbiome comprises data on the individual’s lifestyle, disease history, previous medications, and mental health. Massive datasets of microbiome sequences are collected to facilitate comparative studies to identify specific links between the microbiome and mental health. Although this emerging research domain may show promise for psychiatric patients, it is surrounded by ethical challenges regarding patient privacy, health risks, effects on personal identity, and concerns about responsibility. This narrative overview displays the roles and advances of microbiome research in psychiatry and discusses the philosophical and ethical implications of microbiome big data and microbiome-based interventions for psychiatric patients. We also investigate whether these issues are really “new,” or “old wine in new bottles.”. (shrink)

The combination of the issue of return of individual genetic results/incidental findings and paediatric biobanks is not much discussed in ethical literature. The traditional arguments pro and con return of such findings focus on principles such as respect for persons, autonomy and solidarity. Two dimensions have been distilled from the discussion on return of individual results in a genetic research context: the respect for a participant’s autonomy and the duty of the researcher. Concepts such as autonomy and solidarity do not (...) fit easily in the discussion when paediatric biobanks are concerned. Although parents may be allowed to enrol children in minimal risk genetic research on stored tissue samples, they should not be given the option to opt out of receiving important health information. Also, children have a right to an open future: parents do not have the right to access any genetic data that a biobank holds on their children. In this respect, the guidelines on genetic testing of minors are applicable. With regard to the duty of the researcher the question of whether researchers have a more stringent duty to return important health information when their research subjects are children is more difficult to answer. A researcher’s primary duty is to perform useful research, a policy to return individual results must not hamper this task. The fact that vulnerable children are concerned, is an additional factor that should be considered when a policy of returning results is laid down for a specific collection or research project. (shrink)

Should parents aim to make their children as normal as possible to increase their chances to “fit in”? Are neurological and mental health conditions a part of children’s identity and if so, should parents aim to remove or treat these? Should they aim to instill self-control in their children? Should prospective parents take steps to insure that, of all the children they could have, they choose the ones with the best likely start in life? -/- This volume explores all of (...) these questions and more. Against the background of recent findings and expected advances in neuroscience and genetics, the extent and limits of parental responsibility are increasingly unclear. Awareness of the effects of parental choices on children’s wellbeing, as well as evolving norms about the moral status of children, have further increased expectations from (prospective) parents to take up and act on their changing responsibilities. -/- The contributors discuss conceptual issues such as the meaning and sources of moral responsibility, normality, treatment, and identity. They also explore more practical issues such as how responsibility for children is practiced in Yoruba culture in Nigeria or how parents and health professionals in Belgium perceive the dilemmas generated by prenatal diagnosis. (shrink)

In this chapter we consider the tension between how pain researchers today typically define pains and the dominant, ordinary conception of pain. While both philosophers and pain scientists define pains as experiences, taking this to correspond with the ordinary understanding, recent empirical evidence indicates that laypeople tend to think of pains as qualities of bodily states. How did this divide come about? To answer, we sketch the historical origins of the concept of pain in Western medicine, providing evidence that during (...) large swaths of this history, medical experts characterized pains as laypeople tend to today—that is, as qualities of bodily states. The conception of pains as experiences that we find in contemporary definitions seems to be a relatively recent development corresponding with changes in the diagnostic tools available to doctors. We argue that this history is important and suggests that the most prominent current scientific definition of pain (IASP) is partly stipulative and fails to match how laypeople most often think of pain. We suggest that either we should acknowledge this stipulative character, or else should amend the IASP definition in a pluralistic fashion that notes both bodily and experiential conceptions of pain. (shrink)

Existing empirical research often do not explain which concepts about genetics underlie the assumption that genetic information is deemed important for donor-conceived offspring. This study focused on how donor-conceived individuals following anonymous sperm donation give meaning to and make sense of genes and genetics. Analysis is based on focus groups and interviews with adult donor-conceived offspring. Findings suggest that genes are part of their specific context of being donor-conceived but also play a role in daily life. Genes make sense on (...) an individual level and a relational level, both on parent-child as sibling-level. On an individual level they were perceived as (1) a biological starting package, (2) their own unique combination and (3) as a reference point. On a relational level, genes were seen as (1) “person-al”, (2) connecting and (3) locating individuals. This information is essential for those supporting/counseling donor conceived offspring and families as well as for policy-members. (shrink)

In this chapter, we describe three areas within the broad field of ecogenomics or postgenomics: epigenetics, proteomics, and microbiomics. We argue that these fields challenge traditional bioethics in different ways. Since epigenetic, proteomic, and microbiomic data may contain phenotypical information, they may intensify discussions about consent, privacy, and return of results. But these fields also firmly position organisms, including human beings, as deeply entangled with their environments, as constituted by context, history, and experiences as much as genes. This yields new (...) insights into concepts of health and development. We discuss precision medicine as an example of a systemic approach to health. We argue that acknowledging the entanglement of organism and environment also means recognizing the importance of interdisciplinarity for bioethics and thinking together biomedical ethics and environmental ethics. (shrink)

ABSTRACTIs the question ‘will you regret it if you do this?’ helpful when people face difficult life decisions, such as terminating a pregnancy if a disability is detected or deciding to become a parent? Despite the commonness of the question in daily life, several philosophers have argued lately against its usefulness. We reconstruct four arguments from recent literature on regret, transformative experience and the use of imagination in deliberation. After analysis of these arguments we conclude that the prospect of regret (...) remains a useful deliberative heuristic, provided four conditions are fulfilled. If the prospect of regret is arrived at via reflection on one’s values, in a non-coercive context, when well-informed about factual circumstances, and in a process of self-commitment, the question of what one will regret is a helpful device to get in touch with one’s deepest concerns that give reasons to act in a particular way. (shrink)

With the new and highly accurate noninvasive prenatal test, new options for screening become available. I contend that the current state of the art of NIPT is already in need of a thorough ethical investigation and that there are different points to consider before any chromosomal or subchromosomal condition is added to the screening panel of a publicly funded screening program. Moreover, the application of certain ethical principles makes the inclusion of some conditions unethical in a privately funded scheme, even (...) if such screening would enhance a woman’s reproductive autonomy. On the one hand, a screening program aimed solely at the detection of Down syndrome is subject to the technological imperative and should be reassessed in the light of technologies that allow for the detection of conditions that are at least as severe. On the other hand, some chromosomal conditions should not be included in any screening programs, because this would violate certain ethical principles, such as the right of the future child to genetic privacy. (shrink)

-/- It is commonly believed that the etiology of autism is at least partly explained through genetics. Given the complexity of autism and the variability of the autistic phenotype, genetic research and counseling in this field are also complex and associated with specific ethical questions. Although the ethics of autism genetics, especially with regard to reproductive choices, has been widely discussed on the public fora, an in depth philosophical or bioethical reflection on all aspects of the theme seems to be (...) missing. With this literature review we wanted to map the basic questions and answers that exist in the bioethical literature on autism genetics, research, counseling and reproduction, and provide suggestions as to how the discussion can proceed. We found 19 papers that fitted the description of “bioethics literature focusing on autism genetics,” and analyzed their content to distill arguments and themes. We concluded that because of the complexity of autism, and the uncertainty with regard to its status, more ethical reflection is needed before definite conclusions and recommendations can be drawn. Moreover, there is a dearth of bioethical empirical studies querying the opinions of all parties, including people with autism themselves. Such empirical bioethical studies should be urgently done before bioethical conclusions regarding the aims and desirability of research into autism genes can be done. Also, fundamental philosophical reflection on concepts of disease should accompany research into the etiology of autism. © 2016 Wiley Periodicals, Inc. (shrink)

Purpose: There is a widespread recognition that biomedical explanations offer benefits to those diagnosed with a mental disorder. Recent research points out that such explanations may nevertheless have stigmatizing effects. In this study, this ‘mixed blessing’ [2] account of biomedical explanations is investigated in a case of philosophical interest: Tourette Syndrome. Method: We conducted a vignette survey with 221 participants in which we first assessed quantitative attributions of blame as well as the desire for social distance for behavior associated with (...) Tourette Syndrome. Results: In our study, it is confirmed that in the case of biomedical explanations, less blame is attributed than in the case of psychosocial explanations. When presented with a mixed (or an epigenetic) explanation stressing an entanglement of biological and psychosocial factors this did not increase blame attribution. The desire for social distance is unaffected by the type of explanation but the participants’ free text feedback indicates this might obfuscate an underlying dilemma between stigma and blame revealed in recent research. Conclusion: There seems to be potential for blame reduction in explanations where biological and psychosocial factors are entangled. However, dynamic, ‘epigenetic’, explanations require further qualitative research to be performed as well as a philosophical framework to account for the ‘mixed blessings’ account. (shrink)

In this chapter, we describe three areas within the broad field of ecogenomics or postgenomics: epigenetics, proteomics, and microbiomics. We argue that these fields challenge traditional bioethics in different ways. Since epigenetic, proteomic, and microbiomic data may contain phenotypical information, they may intensify discussions about consent, privacy, and return of results. But these fields also firmly position organisms, including human beings, as deeply entangled with their environments, as constituted by context, history, and experiences as much as genes. This yields new (...) insights into concepts of health and development. We discuss precision medicine as an example of a systemic approach to health. We argue that acknowledging the entanglement of organism and environment also means recognizing the importance of interdisciplinarity for bioethics and thinking together biomedical ethics and environmental ethics. (shrink)

Current and past pandemics have several aspects in common. It is expected that all members of society contribute to beat it. But it is also clear that the risks associated with the pandemic are different for different groups. This makes that appeals to solidarity based on technocratic risk calculations are only partially successful. Objective ‘risks of transmission’ may, for example, be trumped by risks of letting down people in need of help or by missing out certain opportunities in life. In (...) this paper we argue that a rapprochement of the insights of standpoint epistemology with pandemic science and pandemic policy making may be an important step toward making pandemic science more accurate and pandemic calls for solidarity more effective. (shrink)

Thinking with the River: The Environmental Philosophy of Tanaka Shōzō This article explores the environmental philosophy of Tanaka Shōzō, a pioneering Japanese environmentalist during the Meiji era (1868-1912). Tanaka’s response to the ecological and social devastation caused by the Ashio copper mine offers a unique perspective on the relationship between humanity, nature, and technology. His philosophy, especially his ideas on nagare (flow) and doku (poison) emphasizes the interconnectedness of ecological and social systems. I argue that it can offer an alternative (...) to dualistic approaches to nature and is a fruitful addition to contemporary environmental ethics and biotechnology. Specifically, I suggest that Tanaka’s emphasis on an intimate understanding of and collaborative engagement with natural systems can inspire a more reflective and sustainable approach to science and biotech. (shrink)

The ongoing COVID-19 pandemic has made explicit what many of us already knew and some of us are constantly made to feel: good health and the abilities of our bodies & minds1 are fluid and uncertain. We can only ever hold them precariously (Butler, 2004; Scully, 2014). In the end, we are all vulnerable beings. And, yet, vulnerability, perhaps especially in times of crisis, can never be fully universalised, nor is it distributed equally: the value and definition of what our (...) bodies & minds can do, what they mean, and how they are expected – and often pushed – to function, are intrinsically unstable, as they depend on the socio-cultural, political, and economic context. This is perfectly echoed by the title Rosi Braidotti (2020) gave to one of her recent articles on the ongoing COVID-19 crisis and the current posthuman predicament: ‘“We” Are in This Together, But We Are Not One and the Same’. (shrink)

In his article, Ismaili M’hamdi argues that a neutralist approach in public health policy might turn into a gap that separates citizens who endure preventable poor conditions from the state...

Pollution has become a central concept in environmental science, law and politics. However, upon closer scrutiny, the current conceptualisation of pollution proves inadequate. Threshold models, dominant in twentieth-century environmental science, conceptualise pollution as a scalar phenomenon: substances become pollutants when their concentration exceeds an acceptable limit. While pragmatically useful for regulation, this model faces three major issues: vagueness, discreteness and monotonicity. Threshold theory reduces pollution to measurable harm and one sole quantifiable dimension, although pollution encompasses other dimensions. It can also (...) be relational, symbolic or political. Moreover, scalar frameworks risk collapsing complex, situated harms into a single technical metric through pernicious reification and ontological flattening. In this article, we argue that pollution is best understood as a thick, multi-dimensional concept whose descriptive and evaluative aspects are inseparable. Using conceptual engineering, we propose a five-dimensional model of pollution: scalar, symbolic, political, ecological and corporeal. By adopting this dimensional approach, we not only clarify the concept but also preserve its normative character. Thus, re-engineering pollution as a relational, multi-dimensional concept can provide conceptual clarity and foster interdisciplinary research. (shrink)

Our research describes the experiences, views, and attitudes of participants of mediation dialogue groups involving non-related traffic accidents regarding their participation and related topics, such as responsibility, rehabilitation, and restoration. In Belgium, the criminal law holds that victims and offenders need to be informed about the option of entering a restorative mediation process during criminal proceedings. Mediation is voluntary and provided by an independent state-funded organization. We collected the data through individual semi-structured in-depth interviews with participants of two mediation dialogue (...) groups. The data were analyzed through reflexive thematic analysis. We identified three main themes: (a) the importance of shared stories, (b) blurred boundaries, and (c) opportunities and obstacles for repair. Overall, our analysis suggests that mediation involving similar but non-related incidents may provide the participants with valuable knowledge and insights about one another's lives and thoughts and lead to mutual understanding and support. For some, it may even involve a transformative experience. Importantly, our analysis reveals that (a) the presence of a “shared story” and (b) a group dynamic in which participants feel sufficiently at ease with each other are pivotal to achieving a sense of connection and resonance that allows for such mutual understanding and support. These appear to be prerequisites for enabling any kind of healing. (shrink)

BackgroundPrevention of mother to child transmission of HIV remains a key public health priority in most developing countries. The provider Initiated Opt – Out Prenatal HIV Screening Approach, recommended by the World Health Organization lately has been adopted and translated into policy in most Sub – Saharan African countries. To better ascertain the ethical reasons for or against the use of this approach, we carried out a literature review of the ethics literature.MethodsPapers published in English and French Languages between 1990 (...) and 2015 from the following data bases were searched: Pubmed, Cochrane literature, Embase, Cinhal, Web of Science and Google Scholar. After screening from 302 identified relevant articles, 21 articles were retained for the critical review.DiscussionMost authors considered this approach ethically justifiable due to its potential benefits to the mother, foetus and society. The breaching of respect for autonomy was considered acceptable on the grounds of libertarian paternalism. Most authors considered the Opt - Out approach to be less stigmatizing than the Opt - In. The main arguments against the Opt - Out approach were: non respect of patient autonomy, informed consent becoming a meaningless concept and the HIV test becoming compulsory, risk of losing trust in health care providers, neglect of social and psychological implications of doing an HIV test, risk of aggravation of stigma if all tested patients are not properly cared for and neglect of sociocultural peculiarities.ConclusionsThe Opt – Out approach could be counterproductive in case gender sensitive issues within the various sociocultural representations are neglected, and actions to offer holistic care to all women who shall potentially test positive for HIV were not effectively ascertained. The Provider Initiated Opt – Out Prenatal HIV Screening option remains ethically acceptable, but deserves caution, active monitoring and evaluation within the translation of this approach into to practice. (shrink)

Today, more people are diagnosed with a psychiatric condition than ever before. Classifying a certain type of behavior or a pattern of ‘otherness’ under a specific diagnostic label has as a result that the classification itself shifts and expands, and also alters how people view themselves. This is what Ian Hacking called ‘the looping effect’. With regard to autism, the vast majority of research up until now has focused on finding biological explanations for the phenomenon. It is far less known, (...) however, what it means to live with such a diagnosis. A diagnosis has potentially a large impact on how people reflect on their own identity, and on their relations with others in a professional or familial environment. For our research, we have interviewed 22 adults with a diagnosis of autism, in order to try to understand how people experience and evaluate themselves while having a diagnosis, how they experienced the diagnostic process itself and how this diagnosis helps them to overcome problems in their daily lives. How do they cope with the difficulties they experience in their relations, their work, and more in general, how do they participate in society? How do they perceive themselves as being different from or the same as others? Are there differences in how they cope with this ‘otherness’ before and after being diagnosed? Do they benefit from being diagnosed, and how do they combine this with potential disadvantages? In this chapter, we discuss the issue of otherness and classification, using themes and quotes from the interview study. (shrink)

This chapter argues that a developmental view on life may shed light on the role bioethicists can play in research projects. In the first section, I look at the meaning of epigenetics. Epigenetics nowadays refers to the molecular mechanisms regulating gene expression. However, inspired by the legacy of Conrad Waddington, it also implies a developmental view of life. I give an overview of existing bioethical discussions regarding epigenetics, using the example of research into developmental diversity in general and autism specifically (...) to suggest that such a developmental approach may imply focusing on dynamics, context and experiences in normative reflection. Finally, I give some suggestions as to what the role of bioethicists could be in relation to the aims and subjects of responsible science. (shrink)

Both epigenetics and microbiomics are often considered to fall under the umbrella of ‘post-genomics’, as they challenge atomistic and static conceptions of organisms. In this chapter, we investigate how questions raised by epigenetics are also relevant for ethical questions surrounding the microbiome–gut–brain axis. We look at the idea that human beings are ‘holobionts’, and investigate how this matters for responsibility. We describe issues related to privacy and information in stool samples, and also the link between the human microbiome and mental (...) health. We end by suggesting that, even more than epigenetics, microbiome research posits that human beings and other organisms are firmly entangled with, and partially defined by, the environment. (shrink)

In this commentary, I reflect on some of the issues raised by the authors of Chapter 5 this volume. Specifically, I address the opportunities and difficulties of enabling co-creation in a large biomedical consortium, R2D2-MH. In R2D2-MH, overall, researchers are convinced of the fact that co-creation of fundamental biomedical research with people with lived experiences is indispensable if we want such research to be meaningful and ethical. At the same time, there is still much work to be done with regard (...) to the conditions under which such co-creation should be done. This implies a rethinking of how science and science funding is done, and of what it means to truly participate in research. (shrink)

This chapter provides a short introduction to some important developments in epigenetics research. It summarizes debates on scientific and ethical epigenetic exceptionalism that revolve around the question of how unique the implications of insights from epigenetics for ethical issues are. Furthermore, the chapter introduces the concept of responsibility by addressing the various elements of responsibility relationships, and introduces the reader to the main positions in existing literature on epigenetic responsibility. Finally, it contains an overview of the chapters of this volume.

Procreation in the face of an apocalypse: Some ethical considerations In the field of procreation ethics both Kantian and consequentialist arguments have been developed purporting to show the moral impermissibility of having (more than two) children. A survey of the most important arguments leaves us wondering whether one could derive general obligations or prohibitions from abstract principles and apply them to deeply personal decisions about whether or not to have children (and how many). At the same time it is undeniably (...) true that having children, however private the decision to procreate may feel, has an impact far beyond the private sphere. While we argue that the answer to the question whether or not to have a child cannot be derived from moral principles, we recognize that moral considerations about global and intergenerational justice do pertain to the question. We therefore develop an alternative framework for traditional Kantian and consequentialist approaches in procreation ethics, which we call holistic virtue ethics. (shrink)

Autism as a polysemic and dynamic phenomenonIn this paper we demonstrate how the dominant discourse about autism, that stresses biological explanations, has certain ethical implications. On the one hand, such discourse is exculpating. In autism’s history, genetic explanations helped removing the blame from so-called refrigerator mothers. In present-day diagnostic practice, the idea of having a biological diagnosis helps people and their parents see beyond blame and guilt. On the other hand, a simplistic approach to biology risks neglecting the experiences and (...) stories of autistic people in favour of finding causes and cures. In our own research we have noticed that narratives of autistic people explore an alternative autism discourse, one that demonstrate multiple meanings and dynamics of autism. We demonstrate, using the theories of Georges Canguilhem and the science of epigenetics, how dynamic models of life and mind offer the possibility to look at autism differently. Rather than seeing autistic people as people with fundamental flaws in their genes or software faults in their brains that have to be explained, autism appears as a phenomenon that exists in interaction with the context, as a meaningful reaction to the environment. (shrink)