Kristien Hens

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.

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.

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.

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.

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.

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.

The conditions of life of many companion animals and the rate at which they are surrendered to shelters raise many ethical issues. What duties do we have towards the dogs that live in our society? To suggest answers to these questions, I first give four possible ways of looking at the relationship between man and dog: master–slave, employer–worker, parent–child, and friend–friend. I argue that the morally acceptable relationships are of a different kind but bears family resemblances to the latter three. As dogs are beings with an interest in their wellbeing, society has certain duties towards the dogs, which can be translated in legislation. But human beings also have special responsibilities towards the dogs they take into their care. Such responsibilities entail caring for their emotional and physical welfare, but also ensuring a bond of trust, which should not easily be broken.

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.