The feature article in this edition outlines and then critically examines the Nuffield Council of Bioethics’ Report, ‘Genome Editing and Human Reproduction: Social and Ethical issues’. While Christopher Gyngell, Hilary Bowman-Smart & Julian Savulescu, ‘support the approach taken by the Nuffield Council’,1 their findings are stronger than those in the Report, arguing that - beyond being permissible - many instances of heritable genome editing will be moral imperatives. A collection of engaging responses to this feature article are provided by Rachel (...) Horton & Anneke M Luccason, Pete Mills, and Sarah Chan. As a short-sighed introvert, I am going to leave aside my concerns about Gyngell’s and colleagues’ account of the weak and unhappy gene pool in which I swim, and instead focus on their talk of moral imperatives. Gyngell and colleagues construct their moral imperative argument by way of analogy. The most straightforward, and perhaps most compelling, claim concerns single gene disorders. I reconstruct the claim in the following way: 1. There is a moral imperative to screen newborns for phenylketonuria. 2. If it were possible, there would be a moral imperative to provide replacement enzyme therapy for PKU. 3. By analogy, if it were possible, there would be a moral imperative to make safe genome edits which prevent PKU. The same analogical interference is claimed in arguments in favour of: editing around 27 mutations associated with coronary heart disease, editing to shift individuals of low or …. (shrink)

La edición genética tiene muchas aplicaciones en casi todos los ámbitos de la sociedad, pero también puede tener consecuencias impredecibles. La edición del genoma de la línea germinal humana es el centro de una discusión mundial. Debido al creciente número de cuestionamientos científicos, éticos y políticos, muchos sin una respuesta concreta, el consenso de la comunidad científica manifiesta que sería inapropiado modificar genéticamente embriones humanos. Se considera necesario un debate serio y abierto para decidir si se debe suspender o fomentar (...) la investigación en este sentido. En el presente documento, se exponen algunos argumentos audaces a favor de la eliminación de los genes nocivos del genoma humano y los riesgos que supone el eugenismo liberal. (shrink)

This article examines some selected ethical issues in human space missions including human missions to Mars, particularly the idea of a space refuge, the scientific value of space exploration, and the possibility of human gene editing for deep-space travel. Each of these issues may be used either to support or to criticize human space missions. We conclude that while these issues are complex and context-dependent, there appear to be no overwhelming obstacles such as cost effectiveness, threats to human life or (...) protection of pristine space objects, to sending humans to space and to colonize space. The article argues for the rationality of the idea of a space refuge and the defensibility of the idea of human enhancement applied to future deep-space astronauts. (shrink)

:Any space program involving long-term human missions will have to cope with serious risks to human health and life. Because currently available countermeasures are insufficient in the long term, there is a need for new, more radical solutions. One possibility is a program of human enhancement for future deep space mission astronauts. This paper discusses the challenges for long-term human missions of a space environment, opening the possibility of serious consideration of human enhancement and a fully automated space exploration, based (...) on highly advanced AI. The author argues that for such projects, there are strong reasons to consider human enhancement, including gene editing of germ line and somatic cells, as a moral duty. (shrink)

Ever since the publication of Derek Parfit’s Reasons and Persons, bioethicists have tended to distinguish between two different ways in which reproductive technologies may have implications for the...

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)

Following the Second Summit on Human Gene Editing in Hong Kong in 2018, where the birth of two girls with germline genome editing was revealed, the need for a responsible pathway to the clinical application of human germline genome editing has been repeatedly emphasised. This paper aims to contribute to the ongoing discussion on research ethics issues in germline genome editing by exploring key issues related to the initial applications of CRISPR in reproductive medicine. Following an overview of the current (...) discussion on bringing germline genome editing into clinical practice, we outline the specific challenges associated with such interventions and the features that distinguish them from conventional clinical testing of new medical treatments. We then review proposed ethical requirements for initial heritable genome editing, such as the absence of reasonable alternatives, the existence of sufficient and reliable preclinical data, appropriate informed consent, requirements related to safety, and long-term follow-up. (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)

In their paper Chris Gyngell, Hilary Bowman-Smart and Julian Savulescu offer a careful analysis of the Nuffield Council on Bioethics report, Genome Editing and Human Reproduction: social and ethical issues but they challenge us to go further still.i I want to suggest that, although their analysis is clear and accurate, its rather ‘molecular’ approach neglects the overall arc and orientation of the report. Furthermore, their conclusions about prospective parents’ reproductive obligations lack sensitivity to the proper evaluative context and offer littlein (...) the way of policy prescriptions. A neglected aspect of the report is the dialectical relation of the three sets of considerations through which it advances: those relating to the individuals directly involved, the wider society in which they live, and the future of human being in general. In particular, Gyngell et al.’s analysis does not attend to how the second principle advanced in the report interacts with the first. It also ignores an important implication of the refusal of a final synthesis, namely, to inaugurate a continual process of reflection between the first two sets of considerations. And it therefore inevitably glosses over practical questions of the mode and venue for this reflection. Something that has not been well understood in the reception …. (shrink)

Human evolution sits at several important thresholds. In organic evolution, interplay between exogenous environmental and genetic factors rendered new phenotypes at rates limited by genetic variation. The interplay took place on adaptive fitness landscapes determined by correspondence of genetic and environmental relationships. Human evolution involved important emergences that altered the adaptive landscape: language, writing, organized societies, science, and the internet. These endogenous factors ushered in transformative periods leading to more rapidly evolving emergences. I explore the impact of development of emerging (...) biotransformative technologies capable of being applied to effect self-genetic modification and artificial intelligence-augmented cognition on the evolutionary landscape of phenotypes important to cognitive plasticity. Interaction effects will yield unanticipated emergences resulting in hyperrealm adaptive landscapes with more rapid evolutionary processes that feed back upon more fundamental levels while vastly outpacing organic evolution. Emerging technologies exist that are likely to impact the evolution of cognitive plasticity in humans in ways and at rates that will lead to societal upheaval. I show that the theoretical contribution of organic evolution in future human evolution is expected to become comparatively insignificant relative to that made by endogenous environmental factors such as external cognition aids and manipulation of the human genome. The results support the conclusion of a strong recommendation of a moratorium on the adoption of any technology capable of completely altering the course of human evolution. (shrink)

Current advances in assisted reproductive technologies aim to promote the health and well-being of future children. They offer the possibility to select embryos with the greatest potential of being born healthy (eg, preimplantation genetic testing) and may someday correct faulty genes responsible for heritable diseases in the embryo (eg, human germline genome modification (HGGM)). Most laws and policy statements surrounding HGGM refer to the notion of ‘serious’ as a core criterion in determining what genetic diseases should be targeted by these (...) technologies. Yet, this notion remains vague and poorly defined, rendering its application challenging and decision making subjective and arbitrary. By way of background, we begin by briefly presenting two conceptual approaches to ‘health’ and ‘disease’: objectivism (ie, based on biological facts) and constructivism (ie, based on human values). The basic challenge under both is sorting out whether and to what extent social and environmental factors have a role in helping to define what qualifies as a ‘serious’ disease beyond the medical criteria. We then focus on how a human rights framework (eg, right to science and right to the highest attainable health) could integrate the concepts of objectivism and constructivism so as to provide guidance for a more actionable consideration of ‘serious’. Ultimately, it could be argued that a human rights framework, by way of its legally binding nature and its globally accepted norms and values, provides a more universal foundation for discussions of the ethical, legal and social implications of emerging or disruptive technologies. (shrink)

This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to be (...) more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies. (shrink)

Over the past few years, developments in the science of precise editing of human genomes using CRISPR-Cas9 have led many countries that lack specific laws in this area, such as South Africa, to contemplate legal reform. Thaldar et al. recently published five principles to guide legal reform in SA on heritable genome editing. In a similar vein, concerns about the global impact of human germline genome editing have led to calls for a global regulatory mechanism. This is what the World (...) Health Organization has tried to achieve with the recently published ‘Draft governance framework for human genome editing’. In this article, we compare the policies proposed by the draft framework to the current SA legal position, as well as the five guiding principles. The article concludes that SA law is in need of reform in order to meet the global standards that the draft framework seems to be moving towards. (shrink)

Introduction The bioethics literature reflects significant interest in and concern with the use of genetic and genomic information in various settings. Because psychiatric treatment and research raises unique ethical, legal, and social issues, we conducted a scoping review of the biomedical, bioethics, and psychology literature regarding the application of genetic and genomic tools to psychiatric disorders (as listed in the DSM-5) and two associated behaviors or symptoms to provide a more detailed overview of the state of the field. Objectives The (...) primary objective was to examine the available bioethics, biomedical, and psychology literature on applying genetic and genomic tools to psychiatric disorders (other than neurodevelopmental disorders) and two behaviors or symptoms sometimes associated with them (aggression or violence and suicidality) to identify the disorders to which these tools have been applied, the contexts in or purposes for which they have been applied, the ethical, legal, or social concerns associated with those uses, and proposed recommendations for mitigating those concerns. Methods We used Arksey and O’Malley’s scoping review framework: (1) identify the research question; (2) identify relevant studies; (3) select studies; (4) chart the data; and (5) collate, summarize, and report results (2005). We relied on Levac et al. to inform our application of the framework (2010). The PRISMA extension for scoping reviews checklist informed our reporting (2018). We searched three electronic databases MEDLINE (PubMed), Embase, and PsycInfo (EbscoHost) for peer-reviewed journal articles in English to identify relevant literature. One author screened the initial results and additional screening was done in consultation with other authors. A data extraction form using DSM-5 diagnostic categories (excluding neurodevelopmental disorders) was developed and two authors independently each reviewed approximately half of the articles. Inter-rater reliability was ensured by double-coding approximately 10% of the papers. An additional author independently coded 10% of the articles to audit the data. Results In 365 coded publications, we identified 15 DSM-5 diagnostic categories in addition to the two pre-selected behaviors or symptoms (aggression or violence and suicidality) to which genetic or genomic tools have been applied. We identified 11 settings in or purposes for which these tools were applied. Twenty-two types of ethical, legal, or social concerns associated with the application of genetic or genomic tools to these disorders or behaviors/symptoms were identified along with 13 practices or policies that could mitigate these concerns. Conclusion Genetic and genomic tools have been applied to a wide range of psychiatric disorders. These raise a range of ethical, legal, and social concerns. Additional research is warranted to better understand the concerns and effective ways to address them. Advancing the literature to identify relevant ethical, legal, or social concerns and solutions to those problems likely requires greater attention to specific applications of genetic or genomic tools to particular psychiatric disorders and associated behaviors/symptoms as well as broad stakeholder engagement. (shrink)

Molecular genetic engineering technologies such as CRISPR/Cas9 have made the accurate and safe genetic engineering of human embryos possible. Further advances in genomics have isolated genes that predict qualities and traits associated with intelligence. Given these advances, prospective parents could use these biotechnologies to genetically engineer future children for genes that enhance their intelligence. While Julian Savulescu’s Principle of Procreative Beneficence (PPB) argues for the moral obligation of prospective parents to use in-vitro fertilization and preimplantation genetic diagnosis to make eugenic (...) selections of embryos for intelligence, the PPB could imply obligations to genetically engineer selected embryos for intelligence as well. I argue that the PPB implies an additional moral obligation for prospective parents to genetically engineer the embryonic germline identity of selected embryos for genes that predict intelligence. Objections to my argument for the PPB’s extension are also discussed. (shrink)

After reading Savulescu and colleagues,1 one ought to be in no doubt that human heritable genome editing is a ‘moral imperative’: to cure disease, reduce inequalities, improve public health and protect future generations. They make this argument repeatedly and in no uncertain terms. Yet are they right to do so? I am certainly not against developing HGE or exploring its possibilities. Instead, I aim to sound a cautionary note in relation to claims about its technological potential and how we frame (...) arguments on this basis. The ‘moral imperative’ argument has been made many times, since well before the advent of genome editing, by the present authors and others. It generally rests on a number of preconditions, implicit or explicit: that HGE will be safe, effective, cost-efficient and equitably available. Now, many bioethicists would take no issue with, indeed have supported,5 the proposition that, once all of these conditions are satisfied, HGE is something we have good moral reasons to pursue. At this pivotal moment for global science, ethics and governance, however, we need equally to be concerned with the technology’s immediate future trajectory: whether and how we can reach the point of satisfying these conditions. In this context, the MIA is something of a distraction; at worst, it may even be corrosive and damaging. Consider first the argument from evolutionary fitness, that HGE is morally required to counteract the supposed ‘genetic deterioration’ produced by medically enabled ‘survival of the weak’, that makes …. (shrink)

The article by Conrad et al. (AJOB Neuroscience, 2019, 10:1) does not take into account another, still hypothetical, procedure for cognitive enhancement (CE) which would be appropriate to consider in the surveys, i.e. the possibility to genetically enhance the cognitive abilities of a future individual using genome editing techniques. In this case, the conclusions of the article in the context of the “self-others difference” and “safety/naturalness” would be questioned. In fact, the results of the hypothetical surveys with the variant “genome (...) editing” could be significantly different from those obtained in the survey proposed by the authors: an individual would decide not for himself, but for the CE in a future child. In light of these considerations, we hold that the article highlights just the attitudes toward the principle of autonomy and redistributive justice; however, by introducing the new hypothetical scenario of CE with genome editing the attitudes toward the principles of beneficence and non-instrumentalisation could also be appreciated. Special attention to future generations is necessary to inform potential CE public policy, though using genome editing to enhance cognition abilities is just a future hypothetical perspective. (shrink)