In July 2018, the Nuffield Council of Bioethics released its long-awaited report on heritable genome editing. The Nuffield report was notable for finding that HGE could be morally permissible, even in cases of human enhancement. In this paper, we summarise the findings of the Nuffield Council report, critically examine the guiding principles they endorse and suggest ways in which the guiding principles could be strengthened. While we support the approach taken by the Nuffield Council, we argue that detailed consideration of (...) the moral implications of genome editing yields much stronger conclusions than they draw. Rather than being merely ‘morally permissible’, many instances of genome editing will be moral imperatives. (shrink)

In this issue of CQ we introduce a new feature, in which noted bioethicists are invited to reflect on vital current issues. Our first invitee, John Harris, will subsequently assume editorship of this section.

BackgroundOur human societies and certainly also (bio) medicine are more and more permeated with technology. There seems to be an increasing awareness among bioethicists that an effective and comprehensive approach to ethically guide these emerging biomedical innovations into society is needed. Such an approach has not been spelled out yet for bioethics, while there are frequent calls for ethical guidance of biomedical innovation, also by biomedical researchers themselves. New and emerging biotechnologies require anticipation of possible effects and implications, meaning the (...) scope is not evaluative after a technology has been fully developed or about hypothetical technologies, but real-time for a real biotechnology.Main textIn this paper we aim to substantiate and discuss six ingredients that we increasingly see adopted by ethicists and that together constitute “ethics parallel research”. This approach allows to fulfil two aims: guiding the development process of technologies in biomedicine and providing input for the normative evaluation of such technologies. The six ingredients of ethics parallel research are: (1) disentangling wicked problems, (2) upstream or midstream ethical analysis, (3) ethics from within, (4) inclusion of empirical research, (5) public participation and (6) mapping societal impacts, including hard and soft impacts. We will draw on gene editing, organoid technology and artificial intelligence as examples to illustrate these six ingredients.ConclusionEthics parallel research brings together these ingredients to ethically analyse and proactively or parallel guide technological development. It widens the roles and judgements from the ethicist to a more anticipatory and constructively guiding role. Ethics parallel research is characterised by a constructive, rather than a purely critical perspective, it focusses on developing best-practices rather than outlining worst practice, and draws on insights from social sciences and philosophy of technology. (shrink)

Individualist ethical analyses in the enhancement debate have often prioritised or only considered the interests and concerns of parents and the future child. The collectivist critique of the human enhancement debate argues that rather than pure individualism, a focus on collectivist, or group-level ethical considerations is needed for balanced ethical analysis of specific enhancement interventions. Here, I defend this argument for the insufficiency of pure individualism. However, existing collectivist analyses tend to take a negative approach that hinders them from adequately (...) contributing to balanced ethical analysis, and often leads to a prohibitive stance. I argue this is due to two common problems with collectivist analyses: inappropriate acceptance of individualist assumptions, and failure to appropriately weigh individual vs collective ethical considerations. To further develop the collectivist critique in the enhancement debate, I suggest we may look to collectivism in public health ethics, which avoids these problems. (shrink)

There are increasing pressures for bioethics to emphasise ‘translation’. Against this backdrop, we defend ‘speculative bioethics’. We explore speculation as an important tool and line of bioethical inquiry. Further, we examine the relationship between speculation and translational bioethics and posit that speculation can support translational work. First, speculative research might be conducted as ethical analysis of contemporary issues through a new lens, in which case it supports translational work. Second, speculation might be a first step prior to translational work on (...) a topic. Finally, speculative bioethics might constitute different content altogether, without translational objectives. For each conception of speculative bioethics, important methodological aspects determine whether it constitutes good bioethics research. We conclude that whether speculative bioethics is compatible with translational bioethics—and to what extent—depends on whether it is being employed as tool or content. Applying standards of impact uniformly across bioethics may inappropriately limit speculative bioethics. (shrink)

Participants in the long-running bioethical debate over human germline genetic modification (HGGM) tend to imagine future people abstractly and on the basis of conventionalized characteristics familiar from science fiction, such as intelligence, disease resistance and height. In order to distinguish these from scientifically meaningful terms like “phenotype” and “trait,” this article proposes the term “persemes” to describe the units of difference for hypothetical people. In the HGGM debate, persemes are frequently conceptualized as similar, modular entities, like building blocks to be (...) assembled into genetically modified people. They are discussed as though they each would be chosen individually without affecting other persemes and as though they existed as components within future people rather than being imposed through social context. This modular conceptual framework appears to influence bioethical approaches to HGGM by reinforcing the idea of human capacities as natural primary goods subject to distributive justice and supporting the use of objective list theories of well-being. As a result, assumptions of modularity may limit the ability of stakeholders with other perspectives to present them in the HGGM debate. This article examines the historical trends behind the modular framework for genetically modified people, its likely psychological basis, and its philosophical ramifications. (shrink)

The ease and applicability of CRISPR/Cas9––a new and precise gene editing and reproductive technology––have garnered hype and heightened concern about its potential ‘unprecedented and horrific consequences’ and have led many scientific leaders to call for a moratorium on its research and use. CRISPR appears distinctly more controversial than previous technological innovations, with a greater reach and speed of human treatment and enhancement; however, we have seen similarly inflated hopes and fears in response to other medical innovations for well over a (...) century. One intervention that has both historically and recently incited alarm––vaccines––serves as a pertinent example of what could go wrong if a technology's reach is shortened due to inflated fears. By comparing the vaccine controversy and the CRISPR debate, we can help separate the hype from the realistic potential of these technologies. How our society grapples with such innovations will determine the extent to which their impact on our individual and collective health will be beneficial. We must recognise the need for a tempered approach to CRISPR conversation leading to regulation and ethical application. Although CRISPR's reach will continue expanding with ongoing research, thus requiring continuous evaluation, the lessons we have learned from the vaccine controversy demonstrate that our approach must not be to shut down regulation and application now, but to thoughtfully conjoin productive debate and action so that therapeutic gene editing can alleviate suffering as soon as possible without precipitating social outcomes we would belatedly deplore. (shrink)

The development of the CRISPR gene editing technique has been hyped as a technique that could fundamentally change scientific research and its clinical application. Unrecognized is the fact that it joins other technologies that have tried and failed under the same discourse of scientific hype. These technologies, like gene therapy and stem cell research, have moved quickly passed basic research into clinical application with dire consequences. Before hastily moving to clinical applications, it is necessary to consider basic research and determine (...) how CRISPR/Cas systems should be applied. In the case of single gene diseases, that application is expected to have positive impacts, but as we shift to more complex diseases, the impact could be unintentionally negative. In the context of common disabilities, the level of genetic complexity may render this technology useless but potentially toxic, aggravating a social discourse that devalues those with disabilities. This paper intends to define the issues related to disability that are associated with using the CRIPSR/Cas system in basic research. It also aims to provide a decision tree to help determine whether the technology should be utilized or if alternative approaches beyond scientific research could lead to a better use of limited funding resources. (shrink)

Comparisons between germline gene editing using CRISPR technology and a renewal of eugenics are evident in the current bioethical discussions. This article examines the different roles of such references to the past. In the first part, the alleged parallels between gene editing of the germline and eugenics are addressed from three perspectives: First, the historical adequacy of such comparisons is questioned. Second, it is asked whether the evils of the past can in fact be attributed to (future) practices of germline (...) gene editing. Third, it is discussed whether the alleged hazards of eugenics should in fact universally be condemned from a moral perspective. The article attempts to show that references to the eugenic past to rebut gene editing are highly selective and should be abandoned to allow for a more transparent ethical discourse. While the comparison with a eugenic past is frequently drawn by opponents of germline gene editing, the remaining part of this article investigates historic references from the proponents of germline gene editing. It is argued that they also employ different narratives of the past to justify their own liberal position. While such references are equally problematic, some lessons from the history of eugenics will be spelled out that can inform future debates on germline gene editing. (shrink)

The successes of the human genome project and genomics research programs portend great potential to improve upon health and enhance life. As scientific advancements continue, bioethicists and policy makers deliberate over the social and ethical implications of genetic and genomic technologies and information (ggT/I). The application of ggT/I to human reproduction raises conceptual and moral questions about being human and the links between offspring, parents, and society. Given ggT/I’s ability to significantly affect the biological constitution of humans and future human (...) generations thinking through such issues is fundamental to ethical and policy analysis. By means of a systematic literature review and accompanying content analysis, this paper highlights the dominant ethical concerns raised within recent bioethics discourse over the use of ggT/I for human reproduction. Based on these findings it aso offers a framework through which, and demarcates where, religious perspectives can add value to genethics debates and policy deliberation. (shrink)

Heritable genome editing is officially here. ‘Lulu’ and ‘Nana’, born in China, are the first children whose genomes have been intentionally modified. A third gene edited baby may have already been born. Scientists in Russia are planning similar applications.1 We recently argued that HGE should be judged by the same ethical standards that we apply to other technologies.2 There is a moral imperative to improve the health of future generations, to reduce inequalities and improve standards of living. If we can (...) use HGE to achieve these aims, we should. We want to thank Sarah Chan, Peter Mills, Rachel Horton and Anneke Lucassen for their thoughtful criticisms of our paper. We would also like to thank the editors of the Journal of Medical Ethics for helping facilitate this detailed discussion. The moral questions posed by HGE, are complex, multifaceted and difficult. They required focused attention, which formats like this encourage. Our responses to each of the commentaries are detailed below We agree with the following points made in Horton and Lucassen’s paper ‘ The moral argument for heritable genome editing requires an inappropriately deterministic view of genetics ’.3 These are some of the reasons why we say HGE targeting polygenic diseases is likely decades away.2 The technical challenges seem daunting. But science can move quickly, and often does so in bounds. Our capacity to capture and analyse genetic data is rapidly expanding. Over the next 5 years, genomic …. (shrink)