In the wake of the advent of genome editing technology CRISPR-Cas9 (clustered regularly interspaced palindromic repeat (CRISPR)-associated protein 9), there has been a global debate around the implications of manipulating the human genome. While CRISPR-based germline gene editing is new, the debate about the ethics of gene editing is not – for several decades now, scholars have debated the ethics of making heritable changes to the human genome. The arguments that have been raised both (...) for and against the use of genetic technologies in human reproduction reiterate much of the arguments made in the pre-CRISPR debate. As such, it is instructive for South Africa to reflect on these arguments now, in considering our position on the regulation of the use of this novel biotechnology. There are two dominant schools of thought in this area, bioliberalism and bioconservatism. Bioconservatives raise concerns about the risks of genetic manipulation, and argue that it ought to be limited or prohibited to avert these risks to human health and human nature. Bioliberal scholars are more open to the prospect of genetic manipulation, because of its potential utility. In this article, I conclude that in liberal democracies such as our own, bioliberal arguments ought to be seriously considered when formulating policy on human genome editing because of the extent to which they resonate with our Constitutional values and human rights. I further suggest that there is a need for an enquiry into the relevance of African perspectives on the ethical questions that arise concerning germline genome editing. (shrink)

This chapter addresses a general question: What is responsible risking? It explores the notion of "responsible risking" as a thick moral concept, and it argues that the notion can be given moral content that could be action-guiding and add an important tool to our moral toolbox. To impose risks responsibly, on this view, is to take on responsibility in a good way. A core part of responsible risking, this chapter argues, is some version of a Forethought Condition. Such a condition (...) requires us to not make decisions or plans such that we could not deliver on our responsibility obligations. This chapter argues that three moral obligations can be derived from descriptive notions of responsibility. They are (1) the control condition, (2) the responsibility to fix condition, and (3) the responsibility to explain condition. The idea is that in order to impose risks responsibly we ought not act in ways that undermine our ability to remain in control over the risks, undermine our ability to sort out negative outcomes by reparations or compensation, or undermine our prospects of providing an explanation for our actions that also makes sense in hindsight and to those affected. This idea is then tried out on the case of germline gene editing. It is argued that such a moral notion of responsibility is also action-guiding when we do not know for certain what is the morally right or obligatory action all-things-considered due to epistemic gaps. (shrink)

Rapid advances in genome editing and its potential application in medicine and enhancement have been hotly debated by scientists and ethicists. Although it has been proposed that germline gene editing be discouraged for the time being1, the use of gene editing in somatic human cells in the clinical context remains controversial, particularly for interventions aimed at enhancement2. In a report on human genome editing, the US National Academies of Sciences, Engineering, and Medicine (NAS; (...) Washington, DC) notes that “important questions raised with respect to genome editing include how to incorporate societal values into salient clinical and policy considerations”3. We report here our research that opens a window onto what the public thinks about these issues. (shrink)

Summary: Edward Lanphier and colleagues contend that human germline editing is an unethical technology because it could have unpredictable effects on future generations. In our view, such misgivings do not justify their proposed moratorium.

Given some of the various possible impacts of clinical germline editing, we can expect robust disagreement about how best to regulate it. One can point to examples of the promise of editing: “rough...

In their recent article, Koplin, Gyngell and Savulescu (2019) assess the viability of the precautionary principle as a decision-making tool to determine whether and under what circumstances germline gene editing should proceed. While their survey of different forms of the precautionary principle is illuminating, the most novel contribution is a new account of the precautionary principle, what they dub the Sufficientarian Precautionary Principle (SPP). SPP is meant to avoid several problems with existing accounts, while comporting with at (...) least some of the intuitive force behind the general idea of the precautionary principle. However, as it is only one subsection of a larger paper, SPP is not fully worked out. In this brief response, I will flesh out some problems with SPP as a decision-making tool – particularly that there is a lack of adequate normative justification for adopting it. While this does not constitute a decisive refutation of the approach, SPP needs considerable refinement and clarification before it can be considered viable for use in decision-making. (shrink)

It seems certain that one day we will allow the genetic technology which will enhance our offspring. A highly effective new tool, called CRISPR, which allows for carving out genes, is already being used to edit the genomes of animals. In July 2017, the FDA legalized that germline drugs for therapeutic purposes could be sold in the market. It is a high time, now, that we need engage in discussions about the ethics of germline intervention. To contribute to (...) the discussion by showing our thought and to educate the public, we write this paper. (shrink)

In this paper I argue that some human reproductive genome editing interventions can be therapeutic in nature, and thus that it is false that all such interventions just create healthy individuals. I do this by showing that the conditions established by a therapy definition are met by certain reproductive genome editing interventions. I then defend this position against two objections: (a) reproductive genome editing interventions do not attain one of the two conditions for something to be a (...) therapy, and (b) some reproductive genome editing interventions are therapeutic but in a nonstandard way. In the Conclusion I call for a more nuanced discussion of the nature of reproductive genome editing interventions. (shrink)

Intelligent neurotechnology is an emerging field that combines neurotechnologies like brain-computer interface (BCI) with artificial intelligence. This paper introduces a capability framework to assess the responsible use of intelligent BCI systems and provide practical ethical guidance. It proposes two tests, the threshold and flourishing tests, that BCI applications must meet, and illustrates them in a series of cases. After a brief introduction (Section 1), Section 2 sets forth the capability view and the two tests. It illustrates the threshold test using (...) examples from clinical medicine of BCI applications that enable patients with profound disabilities to function at a threshold level through computer mediation. Section 3 illustrates the flourishing test by exploring possible future applications of BCI involving neuroenhancements for healthy people, using examples adapted from research currently underway in the US military. Section 3 applies a capability lens to a complex case involving dual effects, both therapeutic and non-therapeutic, showing how the threshold and flourishing tests resolve the case. Section 4 replies to three objections: neurorights are the best tool for assessing BCI; the two tests are moving targets; and the analysis utilizes a capability view to do work it is not designed for. The paper concludes that a capability view offers unique advantages and gives practical guidance for evaluating the responsible use of present and future BCI applications. Extrapolating from our analysis may help guide other emerging technologies, such as germline gene editing, expected to impact central human capabilities. (shrink)

If bioethical questions cannot be resolved in a widely acceptable manner by rational argument, and if they can be regulated only on the basis of political decision-making, then bioethics belongs to the political sphere. The particular kind of politics practiced in any given society matters greatly: it will determine the kind of bioethical regulation, legislation, and public policy generated there. I propose approaching bioethical questions politically in terms of decisions that cannot be “correct” but that can be “procedurally legitimate.” Two (...) procedures in particular can deliver legitimate bioethical decisions, once combined: expert bioethics committees and deliberative democracy. Bioethics so understood can exceed bioethics as a moral project or as a set of administrative principles to regulate medical practice; it can now aspire to a democratic project that involves ordinary citizens as far as reasonably possible. I advance this argument in four steps: (1) using the example of human germline gene editing, (2) I propose a general understanding of proceduralism, and (3) then combine two types and (4) conclude with a defense of majoritarian proceduralism. I develop this argument in terms of one example: germline gene editing. (shrink)

In The Future of Human Nature, Jürgen Habermas raises the question of whether the embryonic genetic diagnosis and genetic modification threatens the foundations of the species ethics that underlies current understandings of morality. While morality, in the normative sense, is based on moral interactions enabling communicative action, justification, and reciprocal respect, the reification involved in the new technologies may preclude individuals to uphold a sense of the undisposability of human life and the inviolability of human beings that is necessary for (...) their own identity as well as for reciprocal relations. Engaging with liberal bioethics and Catholic approaches to bioethics, the article clarifies how Habermas’ position offers a radical critique of liberal autonomy while maintaining its postmetaphysical stance. The essay argues that Habermas’ approach may guide the question of rights of future generations regarding germline gene editing. But it calls for a different turn in the conversation between philosophy and theology, namely one that emphasizes the necessary attention to rights violations and injustices as a common, postmetaphysical starting point for critical theory and critical theology alike. In 2001, Jürgen Habermas published a short book on questions of biomedicine that took many by surprise.[1] To some of his students, the turn to a substantive position invoking the need to comment on a species ethics rather than outlining a public moral framework was seen as the departure from the “path of deontological virtue,”[2] and at the same time a departure from postmetaphysical reason. Habermas’ motivation to address the developments in biomedicine had certainly been sparked by the intense debate in Germany, the European Union, and internationally on human cloning, pre-implantation genetic diagnosis, embryonic stem cell research, and human enhancement. He turned to a strand of critical theory that had been pushed to the background by the younger Frankfurt School in favor of cultural theory and social critique, even though it had been an important element of its initial working programs. The relationship of instrumental reason and critical theory, examined, among others, by Max Horkheimer, Theodor W. Adorno, and Herbert Marcuse and taken up in Habermas’ own Knowledge and Interest and Theory of Communicative Action became ever-more actual with the development of the life sciences, human genome analysis, and genetic engineering of human offspring. Today, some of the fictional scenarios discussed at the end of the last century as “science fiction” have become reality: in 2018, the first “germline gene-edited” children were born in China.[3] Furthermore, the UK’s permission to create so-called “three-parent” children may create a legal and political pathway to hereditary germline interventions summarized under the name of “gene editing.”In this article, I want to explore Habermas’ “substantial” argument in the hope that philosophy and theology become allies in their struggle against an ever-more reifying lifeworld, which may create a “moral void” that would, at least from today’s perspective, be “unbearable”, and for upholding the conditions of human dignity, freedom, and justice. I will contextualize Habermas’ concerns in the broader discourse of bioethics, because only by doing this, his concerns are rescued from some misinterpretations.[1] Jürgen Habermas, The Future of Human Nature.[2] Ibid., 125, fn. 58. 8[3] Up to the present, no scientific publication of the exact procedure exists, but it is known that the scientist, Jiankui He, circumvented the existing national regulatory framework and may have misled the prospective parents about existing alternatives and the unprecedented nature of his conduct. Yuanwu Ma, Lianfeng Zhang, and Chuan Qin, "The First Genetically Gene‐Edited Babies: It's “Irresponsible and Too Early”," Animal Models and Experimental Medicine ; Matthias Braun, Meacham, Darian, "The Trust Game: Crispr for Human Germline Editing Unsettles Scientists and Society," EMBO reports 20, no. 2. (shrink)

Excerpt: 1. Introduction This chapter provides insight into the diverse ethical debates on genetics and epigenetics. Much controversy surrounds debates about intervening into the germline genome of human embryos, with catchwords such as genome editing, designer baby, and CRISPR/Cas. The idea that it is possible to design a child according to one’s personal preferences is, however, a quite distorted view of what is actually possible with new gene technologies and gene therapies. These are much more limited (...) than the editing and design metaphors suggest. Such metaphors are therefore highly problematic phrases in the context of new gene technologies, for two reasons. On one hand, to design a child of choice by modifying the genome would require modifying any gene of choice, which is more than can be done with current gene technologies, such as CRISPR/Cas. On the other hand, a modification of genes would need to be enough to create any characteristic of choice in the future child. The latter presupposes the assumption of genetic determinism. Moreover, the CRISPR/Cas technology can not only be used in a potentially therapeutic manner at the germline level. In addition, there is the (more likely) scenario of a future clinical therapeutic use of these new gene technologies for modifying the DNA sequence of other cells of the body (somatic genome editing). There is also the option of modifying the epigenome, that is, the spatial configuration of DNA (epigenome editing) (see table 1). Like genetics and genome editing, epigenetics has been at the center of recent popular scientific and ethical discourse as well as scientific debates. The concept of epigenetics has given rise to very different notions of inheritability and responsibility for health, which, however, are oftentimes based on scientifically controversial basic assumptions. That there continues to be covert genetic determinism in the form of epigenetic determinism (see table 2) in debates about epigenetics has been pointed out in ethical analyses of epigenetics. Neither genetic determinism nor epigenetic determinism has been confirmed scientifically. It is therefore important to recognize the concepts that are discussed (and sometimes harshly criticized) in debates about genome editing and epigenetics—for example, concepts about the causal role of DNA for our own life course. This importance is based on the fact that if we understand such controversial concepts, we will be able to remain critical when evaluating scientific knowledge and ethical arguments about genome editing and epigenetics. This chapter, therefore, explains some of these concepts. For an ethical analysis of epigenetics as well as of genome editing, it is necessary to understand and critically reflect upon the underlying concepts of genetic determinism and other, related -isms. The following section offers a detailed introduction to these -isms (section 2; see also table 2). Section 3 provides an ethical analysis of genome editing and epigenetics based on the explanations in section 2. Section 3 focuses on inheritability and responsibility, justice, safety, the problem of consent, and the effects of genome editing and epigenetics on embryos and future generations. This section does not discuss in detail further points that can be found in ethical debates about epigenetics as well as in ethical debates about genome editing. These points include (among others): • fear that the findings of epigenetics and that the methods of genome editing are misused—this also with respect to eugenics and enhancement; • naturalness—an issue we mention in passing a few times in the following analysis; • a possible connection between the genome/epigenome and the concept of human dignity, and the derived danger of instrumentalization and infringement of autonomy when intervening in the genome or epigenome. Since current discourse about ethical issues associated with genome editing focuses mainly on germline interventions, which are, for instance, interventions into a human embryo’s genome, we mainly focus on germline interventions when comparing the debates on genome editing and on epigenetics in section 3. (shrink)

Many arguments have been made against gene editing. This paper addresses the commonly invoked argument that gene editing violates human dignity and is ultimately a subversion of human nature. There are several drawbacks to this argument. Above all, the concept of what human dignity means is unclear. It is not possible to condemn a practice that violates human dignity if we do not know exactly what is being violated. The argument’s entire reasoning is thus undermined. Analyses (...) of the arguments involved in this discussion have often led to the conclusion that gene editing contravenes the principle of genetic identity (genetic immutability) thereby subverting a requisite of human dignity and ultimately threatening human nature. This paper refutes these arguments and shows that any opposition to gene editing cannot rely on the human dignity argument. (shrink)

Assisted reproductive technologies have greatly increased our control over reproductive choices, leading some bioethicists to argue that we face unprecedented moral obligations towards progeny. Several models attempting to balance the principle of procreative autonomy with these obligations have been proposed. The least demanding is the minimal threshold model (MTM), according to which every reproductive choice is permissible, except creating children whose lives will not be worth living. Hence, as long as the future child is likely to have a life worth (...) living, prospective parents may be allowed to use preimplantation genetic diagnosis (PGD) to select embryos with genetic diseases or disabilities. Assuming a consequentialist person‐affecting view of morality, this paper investigates whether the MTM is an appropriate tool to guide procreative decisions given the continuous development of reproductive genetic technologies. In particular, I consider germline genome editing (GGE) and I argue that its application in human reproduction, unlike PGD, should be conceived as person‐affecting towards future progeny. I claim that even if we assume the plausibility of the MTM within PGD, we are committed to accepting that a greater moral obligation towards progeny should guide procreative decisions if GGE were available. In this case, the MTM should no longer be considered an appropriate instrument to guide procreative choices. Finally, I investigate when we face this greater moral obligation, concluding that it applies only when prospective parents have already engaged in the in vitro fertilization process. (shrink)

According to what McMahan and Savulescu (2024) call the “popular position”, embryo selection is less ethically problematic than gene editing (other things being equal). The Two-Tier View, defended by McMahan and Savulescu, implies that the popular position is mistaken. The authors treat gene editing of embryos similarly to standard cases of medical treatments that promise expected benefits for the (subsequent) person even though gene editing also may create risks of harmful side effects for her. (...) McMahan and Savulescu assume that if gene editing is (successfully) done, it is better for the person who developed from the beneficently edited embryo. And, if the editing had not been done, although it was possible, that would have been worse for the same person in question. Thus, the comparator must always be a possible, even if unlikely, world in which she would have existed. That is why gene editing, in their view, resembles medical treatments. Therefore, assuming that standard medical treatments are not more ethically problematic than embryo selection, they conclude that (in general) gene editing should also be treated as not more problematic than embryo selection. In this paper, I am taking one step further than McMahan and Savulescu in questioning the central assumptions in the bioethical debates about new reproductive technologies. In the previous work, we argued that the very distinction between person-affecting and identity-affecting interventions is based on a questionable form of material-origin essentialism (Żuradzki and Dranseika 2022). Here, I argue that the bipartite distinction between person-affecting and impersonal reasons, as used by McMahan and Savulescu, insufficiently represents different possible counterfactual comparisons between real and merely possible outcomes. In particular, I argue that the evaluation of gene editing requires counterfactual comparisons to situations in which the benefited person might or might not exist. Such evaluation requires an additional class of reasons, let me call them “semi-person-affecting,” that cannot be reduced to either person-affecting or impersonal ones. This aspect of gene editing makes it dissimilar to standard cases of medical treatments. (shrink)

Commentary in reply to an article by Jeff McMahan and Julian Savulescu.

Would direct genetic modification of human embryos affect the welfare of future persons? Sparrow’s approach to answering this question fails a core goal of bioethics: to generate perspectives capab...

In a recent article, Marilyn Baffoe-Bonnie offers three arguments for conducting CRISPR/Cas9 biotechnology research to cure sickle-cell disease (SCD) based on addressing historical and current injustices in SCD research and care. I show that her second and third arguments suffer from roughly the same defect, which is that they really argue for something else rather than for conducting CRISPR/Cas9 research in particular. For instance, the second argument argues that conducting this gene therapy research would improve the relationship between SCD (...) sufferers (who are mostly of African descent) and health care providers. But really what is essential in improving this relationship is for those providers to genuinely care and be concerned, and this could be lacking even with the CRISPR research being done. Indeed, this relationship could be improved even without that research being done, as long as there is genuine concern. Thus, this argument actually argues for the need for genuine concern. As for the third argument, one (of two) problems arises because it claims that CRISPR research for SCD should be pursued because the benefits would be shared by even non-research-participants, as non-participants would be encouraged. However, this argues for any research for SCD, not for CRISPR research in particular. I conclude that a better justice-based argument will use only Baffoe-Bonnie’s first argument, which is based on historic neglect of an actual cure for SCD (going beyond merely management or transplant therapies). (shrink)

Abstract: This working paper focuses on the question whether there is a therapeutic imperative that, in specific situations, would oblige us to perform genome editing at the germline level in the context of assisted reproduction. The answer to this central question is discussed primarily with reference to specific scenarios where preimplantation genetic diagnosis (PGD) does not represent an acceptable alternative to germline genome editing based on either medical, or ethical, or – from the perspective of the (...) potential parents – moral or religious grounds. This article deals with four different types of case constellations that result from these possible reasons against PGD as well as from the necessity or dispensability of a subsequent “control PGD.” These cases are discussed based on hypotheses concerning contextual factors and theoretical assumptions. In conclusion, we point out that if our assumptions are correct, there is probably no therapeutic imperative for genome editing at the germline level. We draw this rationale from the fact that germline interventions are likely not person-affecting. However, we caution the reader that our result is preliminary and needs to be more carefully examined in future work in light of the bioethical debate and potential objections. -/- // Abstract: Im Zentrum dieses Working Papers steht die Frage, ob es einen therapeutischen Imperativ geben kann, der uns, in bestimmten Situationen, verpflichten würde, eine Genomeditierung (genome editing) auf Keimbahnebene im Rahmen der assistierten Befruchtung vorzunehmen. Die Antwort auf diese zentrale Frage wird insbesondere mit Bezug auf Fälle diskutiert, in denen das Verfahren der Präimplantationsdiagnostik (PID) keine aus entweder medizinischen oder ethischen oder – aus Sicht der potentiellen Eltern – moralischen bzw. religiösen Gründen akzeptable Alternative zu einem Keimbahneingriff darstellt. Die möglichen Gründe gegen die PID sowie die Erforderlichkeit oder Verzichtbarkeit einer nachfolgenden «Kontroll-PID» ergeben vier verschiedene Fallkonstellationen, denen sich der Beitrag zuwendet. Auf Grundlage von Hypothesen zu kontextuellen Faktoren und theoretischen Annahmen diskutieren wir diese Fälle. Im Ergebnis verweisen wir darauf, dass es, wenn unsere Annahmen zutreffen, vermutlich keinen therapeutischen Imperativ zum genome editing auf Keimbahnebene gibt. Dies begründet sich daraus, dass der Keimbahneingriff vermutlich nicht als personenbezogen (person-affecting) zu bezeichnen ist. Wir weisen jedoch darauf hin, dass unser Ergebnis vorläufig ist und unter Berücksichtigung der bioethischen Debatte und möglicher Einwände genauer geprüft werden muss. -/- // Résumé: Ce Working Paper se concentre sur la question de l’existence d’un impératif thérapeutique qui, dans des situations spécifiques, nous obligerait à réaliser une édition du génome au niveau de la lignée germinale dans le cadre de la procréation assistée. Afin de répondre à cette question centrale nous développons quatre scénarios spécifiques dans lesquels le diagnostic préimplantatoire (DPI) ne représente pas une alternative acceptable à l’édition du génome germinal pour des raisons médicales, éthiques ou – du point de vue des futurs parents – morales ou religieuses. Cet article traite de quatre constellations différentes de cas résultant des raisons mises en avant pour s'opposer au DPI ainsi que de la nécessité ou de l’inutilité d’un ultérieur « DPI de contrôle » Ces cas sont discutés sur la base d’hypothèses portant sur les facteurs contextuels et sur les présupposés théoriques. En conclusion, nous soulignons que si nos hypothèses sont correctes, il n’y a probablement aucun impératif thérapeutique justifiant l’édition du génome au niveau de la lignée germinale. Nous arrivons à cette conclusion parce qu’une intervention au niveau de la lignée germinale n’est probablement pas susceptible d’affecter la personne. Cependant, nous mettons en garde le lecteur sur le fait que notre conclusion est préliminaire et qu’elle doit être examinée avec soin dans des futurs travaux instruits par le débat bioéthique et par les éventuelles objections. (shrink)

Many people find the manipulation of the human germline—editing the DNA of sperm or egg cells such that these genetic changes are passed to the resulting offspring—to be morally impermissible. In this paper, I argue for the claim that editing the human germline is morally permissible. My argument starts with the claim that outcome uncertainty regarding the effects of germline editing shows that the duty to not harm cannot ground the prohibition of germline (...) editing. Instead, if germline editing is wrong, it is wrong because it violates a duty to protect. However, we also have an epistemic duty to gather evidence regarding the effects of editing the human germline which overrides any moral duty to protect future generations. Thus, we have a duty to gather evidence regarding the effects of editing the human germline, which is to say that we have a duty to edit the human germline. (shrink)

In this commentary paper, we are taking one step further in questioning the central assumptions in the bioethical debates about reproductive technologies. We argue that the very distinction between “person affecting” and “identity affecting” interventions is based on a questionable form of material-origin essentialism. Questioning of this form of essentialist approach to human identity allows treating genome editing and genetic selection as more similar than they are taken to be in the standard approaches. It would also challenge the idea (...) that normative reasons we have in these two types of cases markedly differ in strength. (shrink)

In this paper, I will present the empirical version of the slippery slope argument (SSA) in the field of genome editing. According to the SSA, if we adopt germline manipulation of embryos we will eventually end up performing or allowing something morally reprehensible, such as new coercive eugenics. I will investigate the actual possibility of sliding towards eugenics: thus, I will examine enhancement and eugenics both in the classical and liberal versions, through the lens of SSA. In the (...) first part, I will discuss the classical eugenics from a historical perspective and conclude that classical eugenics is morally deplorable; but by currently accepting genome editing I argue that it is not possible to ‘slip’ into classical eugenics. Then, I will analyze liberal eugenics: I will consider Habermas’ and Sandel’s objections to liberal eugenics and genetic human enhancement. Subsequently, I will reply to these arguments affirming that, although it is not possible to refuse any form of genetic enhancement, liberal eugenics would not consider the principles of justice, non-maleficence, and non-instrumentalization; hence, it should be considered not morally acceptable. In addition, I will support the thesis according to which the possibility of relapsing into liberal eugenics is more likely than relapsing into classical eugenics. Then, I will present a strategy that, while avoiding falling into the undesirable scenarios related to SSA, still accepts some application of germline genome editing of embryos and gametes. In such a way, I will show that even if we accept the plausibility of a certain slip into an undesirable scenario, SSA does not offer conclusive reasons to forbid any use of germline genome editing technique in both therapeutic and enhancement fields. (shrink)

Considering public moral attitudes is a hallmark of the anticipatory governance of emerging biotechnologies, such as heritable human genome editing. However, such anticipatory governance often overlooks that future morality is open to change and that future generations may perform different moral assessments on the very biotechnologies we are trying to govern in the present. In this article, we identify an ’anticipatory gap’ that has not been sufficiently addressed in the discussion on the public governance of heritable genome editing, (...) namely, uncertainty about the moral visions of future generations about the emerging applications that we are currently attempting to govern now. This paper motivates the relevance of this anticipatory gap, identifying the challenges it generates and offering various recommendations so that moral uncertainty does not lead to governance paralysis with regard to human germline genome editing. (shrink)

Current debate and policy surrounding the use of genetic editing in humans often relies on a binary distinction between therapy and human enhancement. In this paper, we argue that this dichotomy fails to take into account perhaps the most significant potential uses of CRISPR-Cas9 gene editing in humans. We argue that genetic treatment of sporadic Alzheimer’s disease, breast- and ovarian-cancer causing BRCA1/2 mutations and the introduction of HIV resistance in humans should be considered within a new category (...) of genetic protection treatments. We find that if this category is not introduced, life-altering research might be unnecessarily limited by current or future policy. Otherwise ad hoc decisions might be made, which introduce a risk of unforeseen moral costs, and might overlook or fail to address some important opportunities. (shrink)

The metaphor of “gene editing” has been employed widely in popular discussions of CRISPR technology. The editing metaphor obscures the physical mechanism of action in CRISPR techniques, and understates the present frequency of off-target effects. However, the editing metaphor may be a useful means to think about approaches to regulating the future use of CRISPR. Conceiving of CRISPR as an information technology recalls the highly computational, information-oriented context of genomic research in which CRISPR has emerged. More (...) importantly, the editing metaphor, while currently inaccurate, anticipates a future moment when CRISPR technology will be ubiquitous and extremely reliable. Contemporary deliberations about the regulation of CRISPR should keep in mind that the technology may become more powerful—and more susceptible to misuse—as the overall state of genomic science advances and applications of CRISPR become less expensive and more refined. (shrink)

In this article, I explore the ethical dimensions of same-sex reproduction achieved through epigenome editing—an innovative and transformative technique. For the first time, I analyse the potential normativity of this disruptive approach for reproductive purposes, focusing on its implications for lesbian couples seeking genetically related offspring. Epigenome editing offers a compelling solution to the complex ethical challenges posed by traditional gene editing, as it sidesteps genome modifications and potential long-term genetic consequences. The focus of this article (...) is to systematically analyse the bioethical issues related to the use of epigenome editing for same-sex reproduction. I critically assess the ethical acceptability of epigenome editing with reproductive purposes from multiple angles, considering harm perspectives, the comparison of ethical issues related to gene and epigenome editing, and feminist theories. This analysis reveals that epigenome editing emerges as an ethically acceptable means for lesbian couples to have genetically related children. Moreover, the experiments of a reproductive use of epigenome editing discussed in this article transcend bioethics, shedding light on the broader societal implications of same-sex reproduction. It challenges established notions of biological reproduction and prompts a reevaluation of how we define the human embryo, while poses some issues in the context of gender self-identification and family structures. In a world that increasingly values inclusivity and diversity, this article aims to reveal a progressive pathway for reproductive medicine and bioethics, as well as underscores the need for further philosophical research in this emerging and fertile domain. (shrink)

This is the second edition of the textbook Bioethics in Canada. It is the most up to date bioethics textbook on the Canadian market. Twenty-nine of its 54 contributions are by Canadians. All the chapters carried over from the first edition are revised in full (especially the chapters on obligations to the global poor, on medical assistance in dying, and on public health). It comprises *new* chapters on emerging genetic technologies and on indigenous peoples' health. It contains *new* case studies (...) focusing on ethical issues and problems of relevance to Canadians. From the Preface: This anthology is designed for those teaching bioethics in colleges and universities in Canada. It comprises articles from researchers exploring the main problems of bioethics from a diversity of perspectives and ethical traditions. It includes in particular articles by Canadian researchers who appear in anthologies less often than they should. The hope is that the reader will, as a result, better appreciate the rich reservoir of talent present among those working in bioethics in Canada and Canadian bioethicists working abroad. In addition, this volume intentionally aims to educate the reader about the policies and laws regulating the most important and pressing bioethical problems facing Canadians. The hope is that the reader will develop a nuanced view of the nature, importance, and impact of bioethics in Canada. (shrink)

In recent years, humans’ ability to selectively modify genes has increased dramatically as a result of the development of new, more efficient, and easier genetic modification technology. In this paper, we argue in favor of using this technology to improve the welfare of agricultural animals. We first argue that using animals genetically modified for improved welfare is preferable to the current status quo. Nevertheless, the strongest argument against pursuing gene editing for welfare is that there are alternative approaches (...) to addressing some of the challenges of modern agriculture that may offer ethical advantages over genetic modification; namely, a dramatic shift towards plant-based diets or the development of in vitro meat. Nevertheless, we provide reasons for thinking that despite these possible comparative disadvantages there are important reasons for continuing the pursuit of welfare improvements via genetic modification. (shrink)

The following seems to be a truism in modern day philosophy: No agent can have had other parents (IDENTITY). IDENTITY shows up in discussions of moral luck, parenting, gene editing, and population ethics. In this paper, I challenge IDENTITY. I do so by showing that the most plausible arguments that can be made in favor of IDENTITY do not withstand critical scrutiny. The paper is divided into four sections. In the first, I document the prevalence of IDENTITY. In (...) the second, I examine a defense of IDENTITY on the basis of genetic considerations. In the third, I examine a defense of IDENTITY that I call gamete essentialism. In the fourth, I return to genetic considerations to wrap up the paper. (shrink)

Commentary on Neuhaus and Parent, 'Gene doping--In Animals?' (2019).

Most current techniques to deal with invasive species are ineffective or have highly damaging side effects. To this end suppression-drives based on clustered regularly inter-spaced short palindromic repeats (CRISPR/Cas9) have been touted as a potential silver bullet for the problem, allowing for a highly focused, humane and cost-effective means of removing a target species from an environment. Suppression-drives come with serious risks, however, such that the precautionary principle seems to warrant us not deploying this technology. The focus of this paper (...) is on one such risk – the danger of a suppression-drive escaping containment and wiping out the target species globally. Here, I argue that in most cases this risk is significant enough to warrant not using a gene-drive. In some cases, however, we can bypass the precautionary principle by using an approach that hinges on what I term the ‘Worst-Case Clause’. This clause, in turn, provides us with a litmus test that can be fruitfully used to determine what species are viable targets for suppression-drives in the wild. Using this metric in concert with other considerations, I suggest that only three species are currently possible viable targets – the European rabbit, ship rat and Caribbean Tree Frog. (shrink)

The CRISPR system for gene editing can break, repair, and replace targeted sections of DNA. Although CRISPR gene editing has important therapeutic potential, it raises several ethical concerns. Some bioethicists worry CRISPR is a prelude to a dystopian future, while others maintain it should not be feared because it is analogous to past biotechnologies. In the scientific literature, CRISPR is often discussed as a revolutionary technology. In this paper we unpack the framing of CRISPR as a (...) revolutionary technology and contrast it with framing it as a value-threatening biotechnology or business-as-usual. By drawing on a comparison between CRISPR and the Ford Model T, we argue CRISPR is revolutionary as a product, process, and as a force for social change. This characterization of CRISPR offers important conceptual clarity to the existing debates surrounding CRISPR. In particular, conceptualizing CRISPR as a revolutionary technology structures regulatory goals with respect to this new technology. Revolutionary technologies have characteristic patterns of implementation, entrenchment, and social impact. As such, early identification of technologies as revolutionary may help construct more nuanced and effective ethical frameworks for public policy. (shrink)

Though many ethicists have the intuition that we should leave nature alone, Kyle Johannsen argues that we have a duty to research safe ways of providing large-scale assistance to wild animals. Using concepts from moral and political philosophy to analyze the issue of wild animal suffering (WAS), Johannsen explores how a collective, institutional obligation to assist wild animals should be understood. He claims that with enough research, genetic editing may one day give us the power to safely intervene without (...) perpetually interfering with wild animals’ liberties.---------------Questions addressed include: In what way is nature valuable and is interference compatible with that value? Is interference a requirement of justice? What are the implications of WAS for animal rights advocacy? What types of intervention are promising?---------------Expertly moving the debate about human relations with wild animals beyond its traditional confines, Wild Animal Ethics is essential reading for students and scholars of political philosophy and political theory studying animal ethics, environmental ethics, and environmental philosophy. (shrink)

I argue that most wild animals live bad lives, and that we should intervene in nature to improve their wellbeing.

Promising new solutions or risking unprecedented harms, science and its technological affordances are increasingly portrayed as matters of global concern, requiring in-kind responses. In a wide range of recent discourses and global initiatives, from the International Summits on Human Gene Editing to the Intergovernmental Panel on Climate Change, experts and policymakers routinely invoke cosmopolitan aims. The common rhetoric of a shared human future or of one humanity, however, does not always correspond to practice. Global inequality and a lack (...) of accountability within most institutional contexts of international governance render these cosmopolitan proclamations of ‘one human community’ incoherent and even harmful. More generally, there exists no shared normative standard for the cosmopolitan governance of science, with which such global initiatives could be evaluated. Taking a broadly philosophical perspective, the present paper aims to better understand this problem situation, identifying three high-level challenges global governance of technoscience: problematic ideals of technology and science, the unjust formation of “global” concerns, and the limitations of cosmopolitan theory. By holistically engaging these jointly empirical and normative sites of inquiry, scholars can better support humanity’s re-imagination of technoscientific practices within and beyond the nation-state. (shrink)

Wild animal reproduction poses an important moral problem for animal rights theorists. Many wild animals give birth to large numbers of uncared-for offspring, and thus child mortality rates are far higher in nature than they are among human beings. In light of this reproductive strategy – traditionally referred to as the ‘r-strategy’ – does concern for the interests of wild animals require us to intervene in nature? In this paper, I argue that animal rights theorists should embrace fallibility-constrained interventionism: the (...) view that intervention in nature is desirable but should be constrained by our ignorance of the inner workings of ecosystems. Though authors sometimes assume that large-scale intervention requires turning nature into an enormous zoo, I suggest an alternative. With sufficient research, a new form of gene editing called CRISPR promises to one day give us the capacity to intervene without perpetually interfering with wild animals’ liberties. (shrink)

Projects of human improvement take both individual and intergenerational forms. The biosciences provide many technologies, including prenatal screening and the latest gene editing techniques, such as CRISPR, that have been viewed as providing the means to human improvement across generations. But who is fit to furnish the next generation? Historically, eugenics epitomizes the science-based attempt to improve human society through distinguishing kinds of people and then implementing social policies—from immigration restriction to sexual sterilization and euthanasia—that influence and even (...) direct what sorts of people populate our future. Despite recognition of the horrors of the eugenic extremes of the past and of the subhumanizing of those sufficiently below appearance or ability norms to be viewed as “defective” or “unfit”, many people continue to be drawn to strands of eugenic thinking. (shrink)

As a species, we are on the cusp of being able to alter that which makes us uniquely human, our genome. Two new genetic technologies, embryo selection and germline engineering, are either in use today or may be developed in the future. Embryo selection acts to alter the human gene pool, reducing genetic diversity, while germline engineering will have the ability to alter directly the genomes of engineered individuals. Our genome has come to be what it is (...) through an evolutionary process extending over millions of years, a process that has involved exceedingly complex and unpredictable interactions between ourselves or our ancestors and myriad other life forms within Earth's biosphere. In this paper, the ecological imperative, which states that we must not alter the human genome or the collective human genetic inheritance, will be introduced. It will be argued based on ecological principles that embryo selection and germline engineering are unethical and unwise because they will diminish our survivability as a species, will disrupt our relationship with the natural world, and will destroy the very basis of that which makes us human. (shrink)

Over the last two decades, there was an upsurge of research and innovation in biotechnology and related fields, leading to exciting new discoveries in areas such as the engineering of biological processes, gene editing, stem cell research, CRISPR-Cas9 technology, Synthetic Biology, recombinant DNA, LMOs and GMOs, to mention only a few. At the same time, these advances generated concerns about biosafety, biosecurity and adverse impacts on biodiversity and the environment, leading to the establishment of Research Ethics Committees (RECs) (...) at Higher Education and Research Institutions dedicated to reviewing research with implications for biosafety and the environment. -/- These Biosafety and Environment Research Ethics Committees, referred to as EBRECs, are in the early stages of their establishment and formalisation, and there is much uncertainty about their composition, scope, procedures of decision-making and the principles that should guide their deliberations and assessments. In many respects, EBRECs are venturing into uncharted territory, facing a very wide range of complex research fields, far-reaching research practices and deep concerns new to Review Boards, raising the question to what extent EBRECs can fall back on the fairly well-established principles and procedures of RECs focusing on Human, Health or Animal research, and to what extent they need new or adapted principles and procedures. -/- Against this background, I set out to answer the following three main research questions in this thesis: 1. What is the current state of ethical principles for ethics reviews in the field of environmental and biosafety research ethics? Which principles are currently used in this context, and how? 2. What are the shortcomings of the current principles used by EBRECs and how can they be overcome? 3. What ethical principles must be adopted by environmental and biosafety research ethics committees and guide them in their decision-making? -/- In order to prepare the ground and set the scene for my discussion of these questions, I also formulated four supporting research questions: i. What is environmental research ethics in action? ii. What is biosafety research ethics in action? iii. How are environmental and biosafety ethics related to one another? iv. How should the guidelines and ethical principles related to these two overlapping fields be implemented in the ethics review process? Following my introduction and problem statement in Chapter 1, I devoted Chapters 2 and 3 to an overview of my supporting questions to set the scene for Environmental and Biosafety Research Ethics. In Chapter 4, I turned to my main research question with a discussion of national and international declarations, frameworks and legislation and an investigation of principles in the different research areas to get a picture of applicable principles that can guide EBRECs. -/- The main finding of my thesis is that due to the complexity of EBR, different categories of principles could be the solution for EBRECs. I elaborate on this in Chapter 5, my concluding chapter, in which I also propose a list of core principles that can serve as an accessible and easy-to-use guide for EBRECs in their decision-making. In this proposal, I cluster different kinds of principles in terms of four categories: 1. Principles as a Moral Concept 2. Principles as a Social Concept 3. Principles as a Legal Concept 4. Principles as a Safety Concept . (shrink)

The neutral theory often is presented as a theory of "noise" or silent changes at an isolated "molecular level", relevant to marking the steady pace of divergence, but not to the origin of biological structure, function, or complexity. Nevertheless, precisely these issues can be addressed in neutral models, such as those elaborated here in regard to scrambled ciliate genes, gRNA-mediated RNA editing, the transition from self-splicing to spliceosomal splicing, and the retention of duplicate genes. All of these are instances (...) of a more general scheme of "constructive neutral evolution" that invokes biased variation, epistatic interactions, and excess capacities to account for a complex series of steps giving rise to novel structures or operations. The directional and constructive outcomes of these models are not due to neutral allele fixations per se, but to these other factors. Neutral models of this type may help to clarify the poorly understood role of non-selective factors in evolutionary innovation and directionality. (shrink)

In this new post-genomic age of medicine and biomedical technology, there will be novel approaches to understanding disease, and to finding drugs and cures for diseases. Hundreds of new “disease genes” thought to be the causative agents of various genetic maladies will be identified and added to the list of hundreds of such genes already identified. Based on this knowledge, many new genetic tests will be developed and used in genetic screening programs. Genetic screening is the foundation upon which reproductive (...) technologies such as pre-natal diagnosis (PND) and preimplantation genetic diagnosis (PGD) are based. Genetic information arising from the human genome may also be used in attempts to redesign the human genetic inheritance by engineering the human germline (germline engineering). In each of these technologies—PND, PGD, and germline engineering—there are serious ethical and social concerns. Moreover, all three are eugenic in nature because they strive to control which genes are passed down to future generations. The goals of this article are threefold: 1) to introduce the science behind the three technologies; 2) to give a brief overview of eugenics in the past century and show how these genetic technologies are eugenic; and 3) to present a vision of social justice that rejects the genetic determinism upon which eugenics is based and embraces a holistic, ecological view of nature and humanity. (shrink)

It is not likely that we will ever convincingly know how and why we came to be on this planet; of course, this has never prevented inquisitive minds from pushing the frontiers of understanding and discovery further. Our origin is the subject of scientific theories and continuous inquiries with no end in sight, as the shells of related complexities are getting much harder to crack. Paraphrasing philosopher and historian Will Durant, a very few people are getting to know more and (...) more about less and less. This knowledge and the scientific language used to express it are now becoming more and more incomprehensible to most humans; therefore, despite the sincere efforts of communication media’s countless “talking heads,” we may be inevitably driven by default to a new religion of worshiping the church of science, along with its scientist “priests,” and to a life filled with the unequivocal dangers that could befall us from such devotions. Humanity and the planet are faced with dangers that have and can be issued from the absence or deficiency of proper public knowledge and guiding ethical principles for handling many of the new scientific and engineering discoveries and innovations, such as artificial intelligence, nanotechnology, and plant, animal, and human gene editing, etc. To avoid inadvertent adverse impacts, which could seriously endanger our normal ways of life and even existence, knowledge has to be humanized and massively disseminated. Even at the expense of some mistakes, the benefits certainly outweigh the loss. -/- This book is a small effort along this path. -/- . (shrink)

Volume 19, Issue 7, July 2019, Page 28-30.

In this special issue we will investigate, from the perspective of agricultural ethics the potential to develop a Responsible Research and Innovation approach to agriculture, and the limitations to such an enterprise. RRI is an emerging field in the European research and innovation policy context that aims to balance economic, socio-cultural and environmental aspects in innovation processes. Because technological innovations can contribute significantly to the solution of societal challenges like climate change or food security, but can also have negative societal (...) consequences, it is assumed that social and ethical aspects should be considered during the R&I process. For this reason, the emerging concept of RRI calls for ethical reflection on the nature, scope and applicability of responsibility and innovation in innovation practices in general, and the way social–ethical issues can be applied and addressed in agriculture. (shrink)

An understanding of the factors behind the evolution of multicellularity is one of today’s frontiers in evolutionary biology. This is because multicellular organisms are made of one subset of cells with the capacity to transmit genes to the next generation and another subset responsible for maintaining the functionality of the organism, but incapable of transmitting genes to the next generation. The question arises: why do somatic cells sacrifice their lives for the sake of germline cells? How is germ/soma separation (...) maintained? One conventional answer refers to inclusive fitness theory, according to which somatic cells sacrifice themselves altruistically, because in so doing they enhance the transmission of their genes by virtue of their genetic relatedness to germline cells. In the present article we will argue that this explanation ignores the key role of policing mechanisms in maintaining the germ/soma divide. Based on the pervasiveness of the latter, we argue that the role of altruistic mechanisms in the evolution of multicellularity is limited and that our understanding of this evolution must be enriched through the consideration of coercion mechanisms. (shrink)

Conventional methods of genetic engineering and more recent genome editing techniques focus on identifying genetic target sequences for manipulation. This is a result of historical concept of the gene which was also the main assumption of the ENCODE project designed to identify all functional elements in the human genome sequence. However, the theoretical core concept changed dramatically. The old concept of genetic sequences which can be assembled and manipulated like molecular bricks has problems in explaining the natural genome- (...) class='Hi'>editing competences of viruses and RNA consortia that are able to insert or delete, combine and recombine genetic sequences more precisely than random-like into cellular host organisms according to adaptational needs or even generate sequences de novo. Increasing knowledge about natural genome editing questions the traditional narrative of mutations (error replications) as essential for generating genetic diversity and genetic content arrangements in biological systems. This may have far-reaching consequences for our understanding of artificial genome editing. (shrink)