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This chapter discusses implications for epigenetic responsibility that the application of artificial intelligence (AI) in the analysis of epigenetics gives rise to. AI technology has a capacity to see patterns in big datasets and can help to improve accuracy in epigenetic-based diagnostics, prognostics and therapy. However, characteristics of AI systems, such as their black-box character and their ability to act autonomously and to improve over time without any direct involvement of humans, have repercussions for ascription of responsibility. In the context of AI-based epigenetic analysis in the clinic, questions of epigenetic responsibility are interwoven with responsibility issues connected with AI in several ways that increase both individual and collective forward-looking responsibilities. This chapter illustrates the particular aspect of how healthcare professionals will have to take on certain forward-looking responsibilities to handle the relationship between AI-assisted epigenetic analysis and the patient.

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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.

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Ethical Perspectives

EPUB and EPDF available Open Access under CC-BY-NC-ND licence.

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.

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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.

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This chapter analyses the implications of findings in epigenetics for the ascription of moral responsibility for children. It contrasts shared understandings of procreative responsibility and discusses its extension to include all (individual or collective) actors who influence a child’s gene expression. It also problematizes the focus on biology in this process, using the example of epigenetics as a crossover between social and biological factors that contribute to a child’s life. Epigenetics blurs the boundary between biology and the environment, and thus allows an analysis of contributions to children’s lives that goes beyond classical dualistic categories such as genetic versus environmental or biological versus social. The analysis is undertaken against the broader background of the determination of moral responsibility for children.

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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.

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The suggested effects of lifestyles and environmental exposures through epigenetic modifications have been prolific elements of the debate around (backward- and forward-looking) responsibilities for health. This chapter builds on this debate, by highlighting how considerations of luck, as a factor beyond one’s control, add another layer of difficulty, not only for the attribution of individual responsibility but also for collective responsibility to prevent and remedy the distribution of epigenetic differences in health risks. As a modest resolution to this predicament, the chapter proposes a focus on the aretaic features of collective agents as appropriate targets for blame. This proposal offers an alternative ground for normative claims of collective epigenetic responsibilities, while also avoiding substantive metaphysical and ontological commitments regarding the nature (and responsibility) of collective agents.

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When contemplating reproductive choices, we commonly feel that there are some actions that would harm our future offspring. But in cases where a decision may affect not only the characteristics of our children, but their very identity, this intuition founders. Parfit famously terms this the ‘non-identity problem’. Many scholars interpret Parfit as endorsing a genetic account of identity. Such an account seems to imply that identical twins are in fact the same person. Moreover, it suggests that there is no such thing as gene therapy, since a change of genes results in a different person, rather than curing an existing person. An epigenetic understanding of identity enables us to make sense of the fact that twins are not the same person, but this suggests that we are not harmed by, for example, disease caused by epigenetic changes in response to environmental pollution. Instead, we simply become different people. Since identity is such a biologically complex concept, it is not clear that its relationship with harm in the context of reproductive choices offers any easy solutions within the broadly utilitarian framework that Parfit offers.

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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.

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This chapter analyses the tactics of civil society organizations (CSOs) in three South African cities: Cape Town; Ekurhuleni, in the Gauteng City-Region; and Buffalo City. Drawing on work on data politics, data activism, and postcolonial STS, it uses the notion of ‘conjugated knowledge positions’ to open the reflection to data tactics as part of broader knowledge politics and envisage them as negotiated within a multi-actor game. Based on the case studies, the chapter shows how CSO tactics are positioned along a spectrum between data power and knowledge power. Extending work on CSO urban data politics, the authors conclude that South African CSOs have not rolled out and rolled back data-focused tactics as a consequence of moments of faith and disillusionment in the power of data, but rather mobilize data and other forms of knowledge according to local political contexts and interactional situations.

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