The prospect of human genetic enhancement requires an institutional response, and probably the creation of new institutions. The governance of genetic enhancement technologies, moreover, needs to be global in scope. In this article, I analyze the debate on the global governance of human genetic enhancement. I begin by offering a philosophical justification for the need to adopt a global framework for governance of technologies that would facilitate the improvement of non-pathological genetic traits. I then summarize the main concrete proposals that (...) have recently emerged to govern genome editing at the global level. Finally, I develop some impediments that limit the impetus for global governance of genetic enhancement. (shrink)

Este artículo explora las implicaciones para la bioética de los temas comunes entre el transhumanismo y la gobernanza global de la edición del genoma humano (HGE por sus siglas en inglés). En primer lugar, se aplicó el método de análisis temático reflexivo (ATR) a un conjunto de textos sobre el transhumanismo y sobre la gobernanza mundial de la edición del genoma humano. Como resultado de esta aplicación, surgieron tres temas comunes y sus elementos. Posteriormente se desarrolló un ejemplo de implicación (...) para la bioética de cada uno de dichos temas en donde cada implicación consideró la situación actual y una tarea para la bioética. Finalmente se concluye la importancia de reconocer la situación derivada de los temas comunes y la necesidad trabajar en las tres tareas identificadas es crucial para la bioética contemporánea. (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)

As space travel and intentions to colonise other planets are becoming the norm in public debate and scholarship, we must also confront the technical and survival challenges that emerge from these hostile environments. This paper aims to evaluate the various arguments proposed to meet the challenges of human space travel and extraterrestrial planetary colonisation. In particular, two primary solutions have been present in the literature as the most straightforward solutions to the rigours of extraterrestrial survival and flourishing: (1) geoengineering, where (...) the environment is modified to become hospitable to its inhabitants, and (2) human (bio)enhancement where the genetic heritage of humans is modified to make them more resilient to the difficulties they may encounter as well as to permit them to thrive in non-terrestrial environments. Both positions have strong arguments supporting them but also severe philosophical and practical drawbacks when exposed to different circumstances. This paper aims to show that a principled stance where one position is accepted wholesale necessarily comes at the opportunity cost of the other where the other might be better suited, practically and morally. This paper concludes that case-by-case evaluations of the solutions to space travel and extraterrestrial colonisation are necessary to ensure moral congruency and the survival and flourishing of astronauts now and into the future. (shrink)

This volume bridges contemporary philosophical conceptions of risk and responsibility and offers an extensive examination of the topic. It shows that risk and responsibility combine in ways that give rise to new philosophical questions and problems. Philosophical interest in the relationship between risk and responsibility continues to rise, due in no small part due to environmental crises, emerging technologies, legal developments, and new medical advances. Despite such interest, scholars are just now working out how to conceive of the links between (...) risk and responsibility, the implications that risks may have to conceptions of responsibility (and vice versa), as well as how such theorizing might play out in applied cases. With contributions from leading scholars, this volume brings together new work examining the interplay between risk and responsibility, exploring its varied philosophical aspects and applications to contemporary issues in law, bioethics, technology, and environmental ethics. Risk and Responsibility in Context will be of interest to philosophers working in ethics, bioethics, philosophy of law, and philosophy of technology, as well as scholars and practitioners in law, health and science management, public policy, and environmental studies. (shrink)

The advent of CRISPR has drastically moved the possibility of genetically modifying human genomes from the space of science fiction into nearby reality. Whether one considers the positive results f...

The use of genome embryo editing tools in reproduction is often touted as a way to ensure the birth of healthy and genetically related children. Many would agree that this is a worthy goal. The purpose of this paper is to argue that, if we are concerned with justice, accepting such goal as morally appropriate commits one to rejecting the development of embryo editing for reproductive purposes. This is so because safer and more effective means exist that can allow many (...) more prospective parents to achieve the same valued goal and that offer additional benefits. (shrink)

In the fall of 2018 Jiankui He shocked the international community with the following announcement: two female babies, “Lulu” and “Nana,” whose germlines had been modified by the cutting edge, yet profoundly unsafe CRISPR-Cas9 technology had been born. This event galvanized policy makers and scientists to advocate for more explicit and firm regulation of human germline gene editing. Recent policy proposals attempt to integrate safety considerations and public input to identify specific types of diseases that may be safe targets for (...) human GGE. This paper argues these policy proposals are inadequate in different ways. While Sarkar intends to incorporate input from the disability community for the purpose of deciding the value of human GGE, I argue that his strategy for doing so is inadequate. I’ll argue that an iterative, deliberative process is a more appropriate framework for allowing the disability community to inform policy on human GGE. Further policy proposals have been framed in terms of monogenetic or single-gene diseases. I argue that this way of conceptualizing disease is not what matters for deciding which disorders are viable candidates for human GGE. Instead, what matters is that the disease in question must have genes that have a high degree of causal control with respect to the disease and alternative nucleic acid sequences variants that are likely to produce traits deemed desirable must be identified. Previous policy proposals leave unspecified. What conditions must be met for satisfying condition should not be left to individual scientists to decide for themselves. The present proposal offers some guidance on this issue. (shrink)

Advancements in novel neurotechnologies, such as brain computer interfaces and neuromodulatory devices such as deep brain stimulators, will have profound implications for society and human rights. While these technologies are improving the diagnosis and treatment of mental and neurological diseases, they can also alter individual agency and estrange those using neurotechnologies from their sense of self, challenging basic notions of what it means to be human. As an international coalition of interdisciplinary scholars and practitioners, we examine these challenges and make (...) recommendations to mitigate negative consequences that could arise from the unregulated development or application of novel neurotechnologies. We explore potential ethical challenges in four key areas: identity and agency, privacy, bias, and enhancement. To address them, we propose democratic and inclusive summits to establish globally-coordinated ethical and societal guidelines for neurotechnology development and application, new measures, including “Neurorights,” for data privacy, security, and consent to empower neurotechnology users’ control over their data, new methods of identifying and preventing bias, and the adoption of public guidelines for safe and equitable distribution of neurotechnological devices. (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...

Feminist philosophers of biology bring the tools of feminist theory, and in particular the tools of feminist philosophy of science, to investigations of the life sciences. While the critical examination of the categories of sex and gender (which will be explained below) takes a central place, the methods, ontological assumptions, and foundational concepts of biology more generally have also enjoyed considerable feminist scrutiny. Through such investigations, feminist philosophers of biology reveal the extent to which the theory and practice of particular (...) scientific disciplines and research programs (and, indeed, their philosophical study) are intertwined with both value judgments and social hierarchies. (shrink)

In this article, I begin by describing what I call this Black Lives Matter moment in the US. I then offer three reasons for considering racism as a bioethical issue, the least discussed of which is the way in which racism acts as a barrier to the creation of better healthcare systems. Next, I argue that the concept of race itself constitutes a bioethical issue in a way that is not fully reducible to racism. Finally, I discuss how we, both (...) bioethicists and health care professionals, might meet this moment by identifying individual points of responsibility (beyond liability) for structural injustice. (shrink)

Developed in the past two decades, the clustered regularly interspaced short palindromic repeats‐associated protein 9 (CRISPR‐Cas9) technique offers greater accessibility and efficiency in editing genes. Its immediate success has transformed medical research and treatment in productive ways, but has also left questions about ethical consequences in its wake. These are questions familiar to bioethical inquiry. How do we balance short‐term and long‐term benefits and risks? How do we promote just and equitable access to new medical interventions? How do we protect (...) respect for individual autonomy? These questions require a balance between protecting individuals' liberties and the good of the communities in which they live. In this essay, I am interested in how the principle of respect for autonomy can be interpreted in light of CRISPR‐Cas9. I argue that a relational autonomy framework forges a middle ground between the need to respect individual freedom to pursue genetic treatments and the need to acknowledge the networks of dependence that define our moral worlds. I identify three thematic areas that relational autonomy brings into greater focus: the importance of trust, the acknowledgment of vulnerability/dependence, and the promotion of justice. Autonomy understood relationally allows us to see individual freedom as tethered to communal well‐being. (shrink)

Recent developments in genomic technology, especially those enabling gene editing, promise to put an end to hitherto intractable medical problems and to usher us into the age of personalized medicine. These technologies, however, raise a number of serious ethical challenges. Given the global impact of this technology, recent international regulations emphasize the need for intercultural dialogue on these ethical issues. This paper concentrates on Islamic perspectives on human genetic modification. It examines Islamic juristic discourses on the issue of genetic modification (...) and highlights the different layers within these discourses. The paper identifies the main positions regarding human genetic modification along with the underlying arguments for each of them. In general, these positions are articulated in light of the nature as well as the intended objectives of the different procedures. The paper devotes special attention to the treatment-enhancement distinction and argues that within Islamic discourses this distinction is quite nuanced. The paper points out important substantive and methodological gaps and emphasizes the evolving nature of Islamic discourses on this issue. (shrink)

The distinction between germline and somatic gene editing is fundamental to the ethics of human gene editing. Multiple conferences of scientists, ethicists, and policymakers, and multiple professional bodies, have called for moratoria on germline gene editing, and editing of human germline cells is considered to be an ethical “red line” that either never should be crossed, or should only be crossed with great caution and care. However, as research on germline gene editing has progressed, it has become clear that not (...) all germline interventions are alike, and that these differences make a significant moral difference, when it comes to ethical questions about research, regulation, clinical application, and medical justification. In this paper, I argue that, rather than lumping all germline interventions together, we should distinguish between revising, correcting, and transferring genes, and I assess the consequences of this move for the ethics of gene editing. (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)

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)

In "Nondomination and the Limits of Relational Autonomy," Danielle Wenner aims to achieve the political goals of relational theorists through a more effective means. This is a worthy aspiration. She believes the neorepublican conception of freedom as nondomination "can best promote the aims embodied in the political project of feminist theorists", including reducing conditions of oppression, and do it in a way that avoids the conceptual problems inherent in relational autonomy. While I appreciate the pragmatism and clarity of her argument, (...) in this commentary I raise a challenge to the freedom as nondomination approach, specifically Wenner's claim that it can avoid making substantive value judgments. I... (shrink)

There is a burgeoning corner of the philosophical literature on germline gene editing (GGE) about whether GGE is “person-affecting” or “identify-affecting.” The distinction between actions that aff...

In The New Eugenics: Selective Breeding in an Era of Reproductive Technologies, Judith Daar advocates for increased access to assisted reproductive technologies and minimizes concerns about the potential “eugenic logic” of some procreative choices. Although Daar’s goal of expanded access is laudable, her argument suggests an unresolved tension between the moral equality of persons and individual reproductive freedom. Exploring that tension, this paper argues that efforts to expand access to ART must still grapple with the “eugenic mentality” of quality control (...) that some forms of reproductive and genetic technologies enable. (shrink)

I have known Susan Sherwin all of my academic life—as a newbie graduate student in philosophy following on from an undergraduate degree in political science; as a newly minted PhD trying to figure out what I wanted to do with my degree; and later as a faculty member at Dalhousie University trying to craft a career in a medical school. Over the years, Sue has been an important mentor, colleague and friend.In thinking about what I want to say about Sue's (...) legacy, a well-known adage, often attributed to the renowned poet Maya Angelou,1 came to mind: "People will forget what you said, people will forget what you did, but people will never forget how you made them feel." I doubt that I will ever forget what Sue said, or... (shrink)

Global governance of emerging, disruptive biomedical technologies presents a multitude of ethical problems. The recent paper by Shoziet alraises some of these problems in the context of a discussion of what could be themostdisruptive (and most morally fraught) emerging biomedical technology—human germline genome editing. At the heart of their argument is the claim that, for something like gene editing, there is likely to be tension between the interests of specific states in crafting regulation for the technology, and disagreement about what (...) would be necessary to meet the requirements for responsible translation of gene editing into the clinic. This complicates hopes for a tidy, algorithmic process of crafting global governance via frameworks for regulation built around core ‘ethical values and principles’ (as they are called in the WHO Framework), and also forces us to confront deeper philosophical questions about biotechnology and global health. (shrink)

The Guidelines for Stem Cell Research and Clinical Translation, recently issued by the International Society for Stem Cell Research (ISSCR), include a number of substantive revisions. Significant changes include: (1) the bifurcation of ‘Category 3 Prohibited research activities’ in the 2016 Guidelines into ‘Category 3A Research activities currently not permitted’ and ‘Category 3B Prohibited research activities’ in the 2021 guidelines and (2) the move of heritable human genome editing research out of the ‘prohibited’ category and into the ‘currently not permitted’ (...) category. These changes are noteworthy because of the absence of a clear demarcation line between the two categories insofar as, by definition, that which is ‘prohibited’ is ‘currently not permitted’, and vice versa. Permanence is not part of the definition of ‘prohibition’. In principle, a prohibition can be rescinded at any time. This begs the question ‘Why make a policy change that has no apparent practical effect?’ One hypothesis is that the recategorisation of specific ‘prohibited’ research activities as ‘currently not permitted’ is meant to seed intuitions about which prohibited research activities should ‘soon’ be permitted subject to specialised scientific and ethics review and approval. (shrink)

While somatic cell editing to treat disease is widely accepted, the use of human genome editing for “enhancement” remains contested. Scientists and policy-makers routinely cite the prospect of enhancement as a salient ethical challenge for human genome editing research. If preventive genome editing projects are perceived as pursuing human enhancement, they could face heightened barriers to scientific, public, and regulatory approval. This article outlines what we call “preventive strengthening research” (or “PSR”) to explore, through this example, how working to strengthen (...) individuals’ resistance to disease beyond what biomedicine considers to be the human functional range may be interpreted as pursuing human enhancement. Those involved in developing guidance for PSR will need to navigate the interface between preventive goals and enhancement implications. This article identifies and critiques three of these ideas in the interest of anticipating the wider emergence of PSR and the need for a normative approach for its pursuit. All three “candidate criteria” merit attention, but each also faces challenges that will need to be addressed as further research policy is developed. (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)