Emma Moormann

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.

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.

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.

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.

What do we mean when we talk about epigenetic harm? This paper presents a multidimensional view of epigenetic harm. It is a plea to take a step back from discussions of epigenetic responsibility distributions prevalent in ELSA literature on epigenetics. Instead, it urges researchers to take a closer look at the normative role played by the concept of epigenetic harm. It starts out by showing that the ways in which the object of epigenetic responsibility has already been conceptualized are all related to ‘epigenetic harm’: something negative that happens in which epigenetic mechanisms play a role, or rather something that needs to be avoided. Epigenetic harm is then characterized as a bridging concept between relatively neutral findings on epigenetics on the one side, and potential ethical and societal implications of those findings, primarily in terms of responsibility ascriptions and distributions, on the other. The paper proposes that a sufficiently nuanced account of epigenetic harm should include at least three dimensions. The dimension of causation alone leads to an overly narrow understanding of harm, and a wrong understanding of this dimension might prompt researchers to support an excessively simplistic epigenetic determinism. It is argued that a multidimensional analysis of epigenetic harm is less vulnerable to this threat and more reflective of the various kinds of harm that may be experienced by the subjects of epigenetic alterations. The paper applies insights from disability studies and feminist philosophy to draw attention to two other dimensions of epigenetic harm, namely lived experiences and relationality. The paper concludes by exploring what a shift towards a multidimensional approach to epigenetic harm might mean for epigenetic research and responsibility ascriptions by formulating some concrete implications.

The Non-Identity Problem, first discussed by Derek Parfit in the 1970s, continues to inspire and trouble many philosophers across various disciplines. Ongoing debates in procreative ethics show its relevance in philosophy of medicine. This chapter reports an experimental philosophy study that aims to investigate whether the central role of the problem is justified given lay people’s intuitions about related vignettes. The study focuses on two assumptions underlying the typical use of the Non-Identity Problem. Firstly, I investigate whether a diverse sample of non-philosophers shares Parfit’s No-Difference View. This view entails that there is no moral difference between choices that affect who comes into existence and choices that merely affect already existing people. I found that the non-philosophers in my sample do not hold a No-Difference View. Instead, they attach more moral import to identity-affecting, pre-conception choices than to those made by a woman who is already pregnant. Secondly, this study looks at people’s intuitions about disability and the ways in which those might have an inappropriate impact on their judgements about identity-affecting decisions. I found that aspects of the stories which Parfit seems to deem morally irrelevant are actually considered to be relevant by other people. The participants were most outspoken in their moral judgments about the woman described in the vignettes when those vignettes mentioned disability in general or deafness in particular. The reactions on a vignette in which neither deafness nor disability was mention were less outspoken. particular, I found that both vignettes about disability in general and vignettes about deafness as a particular disability are associated with lower scores than the Pure vignette, in which neither deafness nor disability was mentioned. This chapter concludes with an call for philosophers of medicine to critically investigate their own assumptions about disability and its relation to issues such as quality of life, cure and procreative beneficence.

In this chapter, I discuss the usefulness of the concept of ‘forward-looking collective responsibility’ (FLCR) in ethical debates involving epigenetics. I start out by reviewing previous employments of the collective responsibility in general, and FLCR in particular, in an epigenetics context. I then suggest ways to integrate FLCR in a framework of responsibility for epigenetic justice. Drawing inspiration from intersectional feminism and disability studies, epigenetic injustice is characterized as an instance of historical–structural injustice. Finally, I introduce the example of a Mexico City neighbourhood to show how those concerned about epigenetic responsibility can resist calls for epigenetic eliminativism.

We tend to hold people responsible for their choices, but not for what they can’t control: their nature, genes or biological makeup. This thought-provoking collection redefines the boundaries of moral responsibility. It shows how epigenetics reveals connections between our genetic make-up and our environment. The essays challenge established notions of human nature and the nature/nurture divide and suggest a shift in focus from individual to collective responsibility. Uncovering the links between our genetic makeup, environment and experiences, this is an important contribution to ongoing debates on ethics, genetics and responsibility.