Two major reports in the UK and USA have recently sanctioned as ethically acceptable genome editing of future generations for the treatment of serious rare inherited conditions. This marks an important turning point in the application of recombinant DNA techniques to humans. The central question this paper addresses is how did it became possible for human genetic engineering (HGE) of future generations to move from an illegitimate idea associated with eugenics in the 1980s to a concrete proposal sanctioned by scientists (...) and bioethicists in 2020? The paper uses the concept of a regime of normativity to understand the co-evolution and mutual shaping of technology, imaginaries, norms and governance processes in debates about HGE in the USA and UK. It will be argued that interlinked discursive, institutional, political and technological changes have made proposals for the use of genome editing in the genetic engineering of future generations both “thinkable” and legitimate. (shrink)

Genome editing enables very accurate alterations to DNA. It promises profound and potentially disruptive changes in healthcare, agriculture, industry, and the environment. This paper presents a multidisciplinary analysis of the contemporary development of genome editing and the tension between continuity and change. It draws on the idea that actors involved in innovation are guided by “sociotechnical regimes” composed of practices, institutions, norms, and cultural beliefs. The analysis focuses on how genome editing is emerging in different domains and whether this marks (...) continuity or disruption of the established biotechnology regime. In conclusion, it will be argued that genome editing is best understood as a technology platform that is being powerfully shaped by this existing regime but is starting to disrupt the governance of biotechnology. In the longer term is it set to converge with other powerful technology platforms, which together will fundamentally transform the capacity to engineer life. (shrink)

The historical context of body and tissue donation is deeply problematic, with patriarchal and colonial narratives. The contemporary context of molecular and genetic biology further complicates issues of bodily donation through narratives of abstraction and extraction. As practitioners working outside the conventional boundaries of scientific study learn the tools and techniques to extract and use bodily materials, they are also learning and challenging the procedures and processes. This article approaches questions of bodily donation through the edited transcript of a conversation (...) between artists who regularly use body fluids and cellular bodily materials in their practice, moderated by Louise Mackenzie and Ilke Turkmendag as part of the Taboo–Transgression–Transcendence in Art & Science Conference held online with the support of the University of Applied Arts, Vienna, 2020. The panel challenged the ethical and conceptual assumptions made in biotechnological research and reconsidered where the boundaries of the body lie, what ‘authority’ research carries and what choices researchers make when using the bodies of others. The transcribed conversation addresses taboos of the female body, specifically menstruation, the commodification of tissue from female human bodies, human milk politics and questions biopolitical treatment of the female body. The full, unedited panel conversation, including questions from the audience, and an accompanying video of edited interviews with panellists, is available online at https://www.loumackenzie.com/offering-the-body. (shrink)

This article addresses the child’s right to know their genetic origins in mitochondrial donation. It focuses on the UK’s public debate on mitochondrial replacement techniques and examines the claims-making activities that shaped the donor information regulations. During the public consultation, downplaying the significance of the mitochondria helped distinguish mitochondria donors from gamete donors and determine their relational status with the resulting child. As a result, according to the Mitochondrial Donation regulations, mitochondria donors, unlike gamete donors, will not be required to (...) be identifiable to the resulting child. I argue that, in the UK, similar to donor conception, public understanding of mitochondrial donation is shaped by a “calculus of genes”: simplified accounts of how genes determine the resulting child’s characteristics and identity. While the donor conception regulations ascribe social meaning to the passage of genes, the mitochondria regulations strip the social meaning away from the donation based on the assumption that the genetic contribution made by the donor is quantitatively insignificant in influencing the identity of the resultant offspring. The nature of the genetic material itself should not be considered as a privileged standpoint from which to decide on social meaning of the donation or the rights attached to it. (shrink)

This paper examines the construction of maternal responsibility in transgenerational epigenetics and its implications for pregnant women. Transgenerational epigenetics is suggesting a link between maternal behaviour and lifestyle during pregnancy and the subsequent well-being of their children. For example, poor prenatal diet and exposure to maternal distress during pregnancy are linked to epigenetic changes, which may cause health problems in the offspring. In this field, the uterus is seen as a micro-environment in which new generations can take shape. Because epigenetics (...) concerns how gene expression is influenced by the social realm, including a range of environmental conditions such as stress, diet, smoking, exercise, exposure to chemicals, pollution, and environmental hazards, the research findings in this area have direct policy relevance. For policy makers, rather than controlling this complex range of determinants of health, isolating and targeting maternal body and responsibilising mothers for the control of this micro-environment might seem feasible. Yet, examining the maternal body in isolation as a powerful environment to shape the health of next generations not only responsibilises women for the environment that they cannot control but also makes them a target for intrusive and potentially exploitative biomedical interventions. Even though ‘social factors’ are increasingly considered in epigenetics writing, the phrase is usually taken as self-explanatory without much elaboration. Drawing on the Covid-19 pandemic, this paper moves the current debate forward by providing consolidated examples of how individuals, including pregnant women, have little control over their environment and lifestyle. As evidenced by the pandemic’s disproportionate effects on people with low socioeconomic or poor health status, some pregnant women bore considerable physical and psychological stress which combined with other stress factors such as domestic violence. (shrink)