Kristien Hens

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.

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.

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.

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.

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’.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.