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)

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...

Emerging reprogenetic technologies may radically change how humans reproduce in the not-so-distant future. One foreseeable consequence of disruptive innovations in the procreative domain is an increase in the reproductive autonomy of intended parents. Regarding the prospective parental liberty of enhancing non-health–related traits of the offspring, one controversy has particularly dominated the literature. Does parents' choice of genetically enhancing the traits of their descendants compromise children's future personal autonomy? In this article, I will analyse the main arguments which posit that reprogenetic (...) enhancement could be at odds with the child's future autonomy. I will argue that these objections are ill-founded. Moreover, I will present other arguments that show that reprogenetic technologies can enhance the autonomy of future children. Autonomy enhancement is a plausible and pro tanto desirable application of emerging reprogenetic technologies. (shrink)

Procreative Beneficence (PB) states that couples should have “the best child” they can, that means, they have a moral obligation to select the child, that “can be expected to enjoy the most well-be...

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)

This focus issue considers the normative implications of the recent emergence in genome editing technology known as CRISPR (clustered regularly interspaced short palindromic repeats) or CRISPR‐associated protein 9. Originally discovered in the adaptive immune systems of bacteria and archaea, CRISPR enables researchers to make efficient and site‐specific modifications to the genomes of cells and organisms. More accessible, precise, and economic than previous gene editing technologies, CRISPR holds the promise of not only transforming the fields of genetics, agriculture, and human medicine, (...) but also heralding a new era of democratized biotechnology. However, the speed with which developments in the field have progressed threatens to overwhelm our normative sensibilities about the long‐term practical and ethical implications. The contributors to this focus issue attempt to think through some of the more salient moral and practical consequences of CRISPR in the context of religious ethics, particularly as they relate to themes of autonomy, human flourishing, social justice, and the ethics of enhancement. (shrink)

The first “R” from animal research ethics prescribes the replacement of animal experiments with animal-free alternatives. However, the question of when an animal-free method qualifies as an alternative to animal experiments remains unresolved.Drawing lessons from another debate in which the word “alternative” is central, the ethical debate on alternatives to germline genome editing, this paper develops a general account of when something qualifies as an alternative to something. It proposes three ethically significant conditions that technique, method, or approach X must (...) meet to qualify as an alternative to Y: (1) X must address the same problem as Y, under an appropriate description of that problem; (2) X must have a reasonable chance of success, compared to Y, in solving the problem; and (3) X must not be ethically unacceptable as a solution. If X meets all these conditions, its relative advantages and disadvantages determine whether it is preferable, indifferent, or dispreferable as an alternative to Y.This account is then applied to the question of whether animal-free research methods qualify as alternatives to animal research. Doing so breaks down the debate around this question into more focused (ethical and other) issues and illustrates the potential of the account. (shrink)

In this reply, we wish to defend our original position and address several of the points raised by two excellent responses. The first response questions the relevance of the notion of ‘serious’ within the context of human germline genome modification. We argue that the ‘serious’ factor is relevant and that there is a need for medical and social lenses to delineate the limits of acceptability and initial permissible applications of HGGM. In this way, ‘serious’ acts as a starting point for (...) further discussions and debates on the acceptability of the potential clinical translation of HGGM. Therefore, there is a pressing need to clarify its scope, from a regulatory perspective, so as to prevent individuals from using HGGM for non-therapeutic or enhancement purposes. The second response criticizes the narrow interpretation of the objectivist approach and the apparent bias towards material innovations when discussing the right to benefit from scientific advancements. As an in-depth discussion of the objectivist and constructivist approaches was beyond the scope of our original paper, we chose to focus on one specific objectivist account, one which focuses on biological and scientific facts. We agree, however, with the critique that material innovations should not be the sole focus of the right to benefit from scientific advancements, which also incorporates freedom of scientific research and access to scientific knowledge scientific freedom and knowledge, including the influence of these on ethical thinking and cultures. (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)

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)

This paper gives an introduction to the interdisciplinary special section. Against the historical and ethical background of reproductive technologies, it explores future scenarios of human reproduction and analyzes ways of mutual engagement between fictional and academic endeavors. The underlying idea is that we can make use of human reproduction scenarios in at least two ways: we can use them to critique technologies by imagining terrible consequences for humanity but also to defend positions that favor scientific and technological development.

Targeted modifications of the human epigenome, epigenome editing (EE), are around the corner. For EE, techniques similar to genome editing (GE) techniques are used. While in GE the genetic information is changed by directly modifying DNA, intervening in the epigenome requires modifying the configuration of DNA, for example, how it is folded. This does not come with alterations in the base sequence (‘genetic code’). To date, there is almost no ethical debate about EE, whereas the discussions about GE are voluminous. (...) Our article introduces EE into bioethics by translating knowledge from science to ethics and by comparing the risks of EE with those of GE. We, first (I), make the case that a broader ethical debate on EE is due, provide scientific background on EE, compile potential use-cases and recap previous debates. We then (II) compare EE and GE and suggest that the severity of risks of novel gene technologies depends on three factors: (i) the choice of an ex vivo versus an in vivo editing approach, (ii) the time of intervention and intervention windows and (iii) the targeted diseases. Moreover, we show why germline EE is not effective and reject the position of strong epigenetic determinism. We conclude that EE is not always ethically preferable to GE in terms of risks, and end with suggestions for next steps in the current ethical debate on EE by briefly introducing ethical challenges of new areas of preventive applications of EE (III). (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)