‘Liberal eugenics’ has emerged as the most popular position amongst philosophers writing in the contemporary debate about the ethics of human enhancement. This position has been most clearly articulated by Nicholas Agar, who argues that the ‘new’ liberal eugenics can avoid the repugnant consequences associated with eugenics in the past. Agar suggests that parents should be free to make only those interventions into the genetics of their children that will benefit them no matter what way of life they grow up (...) to endorse. I argue that Agar's attempt to distinguish the new from the old eugenics fails. Once we start to consciously determine the genetics of future persons, we will not be able to avoid controversial assumptions about the relative worth of different life plans. Liberal eugenicists therefore confront the horns of a dilemma. Whichever way they try to resolve it, the consequences of widespread use of technologies of genetic selection are likely to look more like the old eugenics than defenders of the new eugenics have acknowledged. (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)

Procreative obligations are often discussed by evaluating only the consequences of reproductive actions or omissions; less attention is paid to the moral role of intentions and attitudes. In this paper, I assess whether intentions and attitudes can contribute to defining our moral obligations with regard to assisted reproductive technologies already available, such as preimplantation genetic diagnosis (PGD), and those that may be available in future, such as reproductive genome editing and ectogenesis, in a way compatible with person‐affecting constraints. I propose (...) the parent–child relationship argument, which is based on the moral distinction between creating and parenting a child. Hence, I first argue that intentions and attitudes can play a role in defining our moral obligations in reproductive decisions involving PGD. Second, I maintain that if we accept this and recognize reproductive genome editing and ectogenesis as person‐affecting procedures, we should be committed to arguing that prospective parents may have moral reasons to prefer reproduction via such techniques than via sexual intercourse. In both cases, I observe an extension of our procreative responsibility beyond what is proposed by the consequentialist person‐affecting morality. (shrink)

In recent years, bioethical discourse around the topic of ‘genetic enhancement’ has become increasingly politicized. We fear there is too much focus on the semantic question of whether we should call particular practices and emerging bio-technologies such as CRISPR ‘eugenics’, rather than the more important question of how we should view them from the perspective of ethics and policy. Here, we address the question of whether ‘eugenics’ can be defended and how proponents and critics of enhancement should engage with each (...) other. (shrink)

The past few years has seen a resurgence in the public interest in space flight and travel. Spurred mainly by the likes of technology billionaires like Elon Musk and Jeff Bezos, the topic poses both unique scientific as well as ethical challenges. This paper looks at the concept of generation ships, conceptual behemoth ships whose goal is to bring a group of human settlers to distant exoplanets. These ships are designed to host multiple generations of people who will be born, (...) live, and die on these ships long before it reaches its destination. This paper takes reproductive ethics as its lens to look at how genetic enhancement interventions can and should be used not only to ensure that future generations of offspring on the ships, and eventual exoplanet colonies, live a minimally good life but that their births are contingent on them living genuinely good and fulfilling lives. The paper makes the further claim that if such a thesis holds, it also does so for human enhancement on Earth. (shrink)

With the recent advancements in scientific comprehension of genetics and the decipherment of complex techniques for editing human genomes, liberal eugenics—eugenic ideal premised on the liberal values of autonomy and pluralism that leaves reproductive choices to parents rather than anachronistic statist authoritarian interventions—has inevitably become a polarising conundrum in contemporary liberal societies as to its utility and destructiveness. Focusing on one species of liberal eugenics—namely, genome editing interventions—I contend that liberal eugenics could be harmful—harm herein construed as that which undermines (...) the salient liberal values of equality, autonomy, and pluralism—since it is itself antithetical to the bases of the liberal society. This contention is based upon three premises: first, that individuals are rather seldom rational decision-makers such that leaving all reproductive choices to the whims of individual parents would be immensely counterproductive to future offspring’s right to open future; second, that liberal eugenics—much like its authoritarian antecedent—could intersect with myriad identities, including race, class, sex, disability, and sexual orientation in ways that might exacerbate social divisions, marginalise different groups, and engender homogeneity; and third, that it undermines individual autonomy of the future person as a member of the liberal community, particularly if their capacities and abilities are tailored to fit parents’ specific life projects and putatively reasonable conceptions of the good. The underscored potential malaises of liberal eugenics should, I argue, be discursively negotiated between parents and the state via the development of robust general laws that regulate heritable genome editing interventions to ensure that the welfare of the future persons is prioritised and that the liberal commitment to autonomy is immune to antiliberal perversions. (shrink)

ZusammenfassungWie ist die Auswahl zukünftiger Kinder in moralischer Hinsicht zu beurteilen? Der Beitrag untersucht diese Frage auf der Basis eines liberalen Prinzips der reproduktiven Freiheit, welches Handlungsspielräume und Privatsphäre in Fragen der Fortpflanzung verteidigt, wenn nicht gewichtige moralische Gründe aufgezeigt werden können, welche den Handlungen der beteiligten Personen Grenzen setzen. Er beschränkt sich auf die negative Auswahl, d. h. die Auswahl von gesunden Kindern anstelle von zukünftigen Kindern mit Behinderung oder gesundheitlicher Beeinträchtigung. Erörtert werden selektionsbefürwortende Überlegungen, welche das Wohlergehen des (...) zukünftigen Kindes in den Fokus rücken, und zwei grundsätzlich selektionskritische Argumente. Das erste verweist auf parentale Tugenden, welche mit der Auswahl zukünftiger Kinder unvereinbar wären. Bei dem zweiten handelt es sich um den Einwand der Diskriminierung von Menschen mit Behinderung. Das Ergebnis der Diskussion ist, dass es zukünftigen Eltern in den meisten Fällen freisteht, die Entscheidung über die Auswahl ihrer Kinder im Licht ihrer Ziele und Werte zu treffen. (shrink)

This is a critical response to "Defending Eugenics", published in MBR in 2018.

In her short story “Stable Strategies for Middle Management,” Eileen Gunn imagines a future in which Margaret, an office worker, seeks radical genetic enhancements intended to help her secure the middle-management job she wants. One source of the story’s tension and dark humor is dramatic irony: readers can see that the enhancements Margaret buys stand little chance of making her life go better for her; enhancing is, for Margaret, probably a prudential mistake. This paper argues that our positions in the (...) real world are sufficiently similar to Margaret’s position in Gunn’s fictional world that we should take this story seriously as grounding an argument from analogy for the conclusion that radical genetic enhancements are, for us, probably a prudential mistake. The paper then defends this method. When the question at hand is one of speculative ethics, there is no method better fit to the purpose than argument from analogy to speculative fiction. (shrink)

This paper addresses the so-called Taurek debate on whether or not to save the greater number of victims in rescue conflicts. In this controversy we take a consequentialist and aggregationist pro-numbers position and defend it against various objections. In particular, we consider it to be compatible with the principle of equal concern. Given that the pro-numbers position hinges to a significant extent on the acceptance of the person-neutral value of personal well-being, we offer a coherentist justification for this value claim. (...) Systematically though, we argue that neither pure welfare aggregationism nor its strict rejection are convincing. Rather, rejoining the two ethical dimensions of individual claims and collective well-being requires a hybrid position. Identifying three possible ways of constructing such a position, we briefly defend them against a recent version of the charge that they cannot be coherently expressed in a rational choice framework. -/- / Zusammenfassung: Im Rahmen der sogenannten Taurek-Debatte wird die Frage diskutiert, ob in Rettungskonflikten die größere Anzahl an Opfern gerettet werden sollte oder nicht. Wir beziehen in dieser Kontroverse eine konsequentialistische und aggregationistische Pro-Anzahl-Position und verteidigen diese gegen verschiedene Einwände. Insbesondere halten wir die Position für kompatibel mit dem Prinzip gleicher Achtung. Angesichts des Umstandes, dass die Pro-Anzahl-Position in maßgeblicher Weise von der Annahme eines personenneutralen Wertes persönlichen Wohlergehens abhängt, bieten wir eine kohärentistische Rechtfertigung für diese Wertbehauptung. Systematisch argumentieren wir, dass weder ein reiner Wohlergehensaggregationismus noch seine komplette Zurückweisung überzeugend sein können. Die Vereinigung der beiden ethischen Dimensionen individueller Ansprüche und kollektiven Wohlergehens erfordert stattdessen eine hybride Position. Wir identifizieren drei mögliche Wege für die Konstruktion einer solchen Hybridposition und verteidigen diese abschließend kurz gegen einen aktuellen Vorwurf, demzufolge diese nicht auf kohärente Weise im Rahmen der rationalen Entscheidungstheorie abgebildet werden können. (shrink)

Étant donné la définition de l'eugénisme, il est très difficile d'établir une distinction claire entre la science (médecine, ingénierie génétique) et l'eugénisme en tant que domaine inclus. Et pour définir une ligne sur laquelle l'ingénierie génétique ne devrait pas aller plus loin, conformément aux normes morales, juridiques et religieuses. Si nous acceptons l'aide de la génétique pour trouver des moyens de lutter contre le cancer, le diabète ou le VIH, nous acceptons également l'eugénisme positif tel qu'il est défini à présent. (...) Et si nous acceptons le dépistage génétique et les interventions sur le fœtus, ou l’avortement, nous acceptons implicitement l’eugénisme négatif. En outre, au niveau gouvernemental, bien que l'eugénisme soit officiellement refusé, il a été légalisé dans de nombreux pays jusqu'à récemment et est toujours accepté et légalisé, même sous des formes subtiles, même de nos jours. -/- TABLE: -/- Abstract Introduction 1. Histoire de l'eugénisme - 1.1 Antiquité - 1.2 Le darwinisme social - 1.3 Francis Galton - 1.4 Charles Davenport - 1.5 L'eugenisme en tant que politique d'État - - 1.5.1 L'eugenisme en États-Unis - - 1.5.2 L'eugenisme en Allemagne - 1.6 La période d'après-guerre 2. L'eugénisme actuel - 2.1 L'eugénisme libéral - 2.2 L'eugénisme en tant que politique d'État 3. L'éthique de l'eugénisme 4. L'avenir de l'eugénisme Conclusions Bibliographie -/- DOI: 10.13140/RG.2.2.12520.83203 . (shrink)

Eugenics is often referred to in debates on the ethics of reproductive technologies and practices, in relation to the creation of moral boundaries between acceptable and unacceptable technologies, and acceptable and unacceptable uses of these technologies. Historians have argued that twentieth century eugenics cannot be reduced to a uniform set of practices, and that no simple lessons can be drawn from this complex history. Some authors stress the similarities between past eugenics and present reproductive technologies and practices (what I define (...) throughout the paper as ‘the continuity view’) in order to condemn the latter. Others focus on the differences between past and present practices (what I define throughout the paper as ‘the discontinuity view’) in order to defend contemporary reproductive technologies. In this paper, I explore the meanings of the word ‘eugenics’ and the relationship between its past and present uses in terms of contemporary debates on reproductive technologies and practices. I argue that moral disagreement about present technologies originate in divergent views of condemnable and justifiable features of the past. (shrink)

As eugenics is defined, it is very difficult to make a clear distinction between science (medicine, genetic engineering) and eugenics as a included field. And to set a line over which genetic engineering should not go further, according to moral, legal and religious norms. If we accept the help of genetics in finding ways to fight cancer, diabetes, or HIV, we also accept positive eugenics as they are defined now. And if we accept genetic screening, and interventions on the unborn (...) baby, or abortion, we also implicitly accept negative eugenics. In addition, at government level, although eugenics are officially denied, it has been legalized in many countries until recently, and is still accepted and legalized, albeit in subtle forms, even these days. The section Introduction defines the term and classification modes. The section History of Eugenics follows eugenics from the ancient period, the introduction of eugenics by Francis Galton, the practice of eugenics as a state policy in various countries, and the present eugenics (liberal eugenics). I then analyze various issues raised by the Ethics of Liberal Eugenics, and I have developed a special section for the Future of Eugenics, focusing on the human genome project. Finally, in the Conclusions, I express my personal views on the current practice of eugenics. -/- CONTENTS: -/- Abstract Introduction New Eugenics The Future of Eugenics Conclusions Bibliography -/- DOI: 10.13140/RG.2.2.28662.45120. (shrink)

Beliefs about the moral status of children have changed significantly in recent decades in the Western world. At the same time, knowledge about likely consequences for children of individual, parental, and societal choices has grown, as has the array of choices that (prospective) parents may have at their disposal. The intersection between these beliefs, this new knowledge, and these new choices has created a minefield of expectations from parents and a seemingly ever-expanding responsibility towards their children. Some of these new (...) challenges have resulted from progress in genetics and neuroscience. It is these challenges that we focus on in this introduction and volume. (shrink)

In 2015 a team of scientists used a new gene-editing technique called CRISPR-Cas9 to edit the genome of 86 non-viable human embryos. The experiment sparked a global debate on the ethics of gene editing. In this paper; I first review the key ethical issues that have been addressed in this debate. Although there is an emerging consensus now that research on the editing of human somatic cells for therapeutic purpose should be pursued further; the prospect of using gene-editing techniques for (...) the purpose of human enhancement has been met with strong criticism. The main thesis that I defend in this paper is that some of the most vocal objections recently raised against the prospect of genetic human enhancement are not justified. I put forward two arguments for the morality of genetic human enhancement. The first argument shows how the moral and legal framework within which we currently claim our procreative rights; especially in the context of IVF procedures; could be deployed in the assessment of the morality and legality of genetic human enhancement. The second argument calls into question the assumption that the average level of human cognitive performance should have a normative character. (shrink)

The view that it is better for life to be created free of disability is pervasive in both common sense and philosophy. We cast doubt on this view by focusing on an influential line of thinking that manifests it. That thinking begins with a widely-discussed principle, Procreative Beneficence, and draws conclusions about parental choice and disability. After reconstructing two versions of this argument, we critique the first by exploring the relationship between different understandings of well-being and disability, and the second (...) by more briefly focusing on the idea of a significant reason. By placing these results against the broader historical and ongoing contexts in which the lives of those with disabilities have been deemed of inferior quality, we conclude with a call for greater humility about disability and well-being in thought and practice. (shrink)

În acest articol încerc să argumentez opinia că, așa cum este definită eugenia, este foarte dificil de făcut o diferențiere clară între știință (medicină, ingineria genetică) și eugenie. Și de stabilit o linie peste care ingineria genetică nu ar trebui să treacă, conform unor norme morale, juridice și religioase. Atâta timp cât acceptăm ajutorul geneticii în găsirea unor modalități de combatere a cancerului, diabetului sau HIV, acceptăm în mod implicit și eugenia pozitivă, conform definiției actuale. Și atâta timp cât acceptăm (...) screening-ul genetic, și intervenții asupra fătului nenăscut, sau avortul, acceptăm în mod implicit și eugenia negativă. În plus, la nivel de guverne, deși oficial eugenia este repudiată, ea a fost legalizată în foarte multe țări până de curând, și încă mai este acceptată și legalizată, chiar dacă în forme mai subtile, și în prezent. În Introducere definesc termenul și modurile de clasificare. Urmează Istoria eugeniei pornind din perioada antică, introducerea eugeniei de Francis Galton, practica eugeniei ca politică de stat în diverse țări, și eugenia actuală (eugenia liberală). Analizez apoi diverse probleme ridicate de Etica eugeniei liberale, și am dezvoltat o secțiune aparte pentru Viitorul eugeniei, cu accent pe proiectul genomului uman. În final, în secțiunea Concluzii expun opiniile personale cu privire la practica actuală a eugeniei. Am folosit ca surse principale de investigație articolele lui Kenneth M. Ludmerer, ”American Geneticists and the Eugenics Movement: 1905-1935”, Kathy J. Cooke, ”Duty or Dream? Edwin G. Conklin's Critique of Eugenics and Support for American Individualism”, Jonathan Anomaly, ”Defending Eugenics”, John R. Harding Jr. ”Beyond Abortion: Human Genetics and the New Eugenics”, Michael Boulter, ”Bloomsbury Scientists”, Chapter Title: The rise of eugenics, 1901–14, Michael Ruse and Edward O. Wilson, ”Moral Philosophy as Applied Science” și Goering, Sara, "Eugenics". (shrink)

Matti Häyry’s new book Rationality and the Genetic Challenge discusses the ethics of human genetic modification and the bioethical rationalities that inform the different ethical conclusions authors have advanced. It is aimed at correcting the belief that “only one rationality exists or one morality exists; that those that disagree [with them] are unreasonable or evil.” Häyry argues that there are multiple rationalities, and that even though ethical issues may have solutions within individual rationalities, disagreements that have their root in separate (...) rational approaches cannot be universally solved by intellectual arguments. In debates about the ethics of using new biotechnologies to genetically modify human beings, the normal state is one of fundamental disagreement over almost all of the anticipated uses to which the technology could be put. Häyry’s point is that such a state of affairs is not necessarily due to a lack of reason because there are many, equally valid, ways of being reasonable. (shrink)

Policy-makers have attempted to frame the ethical requirements that are relevant to the creation of human beings via reproductive technologies. Various reports and laws enacted in New Zealand, Canada, Australia, and Britain have introduced tests for how we should weigh child welfare when using these technologies. A number of bioethicists have argued that child welfare should be interpreted as a “best interests” test. Others have argued that there are ethical reasons why we should abandon this kind of test. I will (...) argue that at least some of the relevant policy can be interpreted as requiring those wishing to exercise their procreative liberty to have a reasonable plan to care and nurture any resulting child, thereby respecting the internal preconditions of that liberty. This interpretation of child welfare requirements answers some of the ethical worries about a child welfare test. (shrink)

Disability activists influenced by queer theory and advocates of “human enhancement” have each disputed the idea that what is “normal” is normatively significant, which currently plays a key role in the regulation of pre-implantation genetic diagnosis (PGD). Previously, I have argued that the only way to avoid the implication that parents have strong reasons to select children of one sex (most plausibly, female) over the other is to affirm the moral significance of sexually dimorphic human biological norms. After outlining the (...) logic that generates this conclusion, I investigate the extent to which it might also facilitate an alternative, progressive, opening up of the notion of the normal and of the criteria against which we should evaluate the relative merits of different forms of embodiment. This paper therefore investigates the implications of ideas derived from queer theory for the future of PGD and of PGD for the future of queerness. (shrink)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

In this paper I examine the prevailing assumption that there is a right to procreate and question whether there exists a coherent notion of such a right. I argue that we should question any and all procreative activities, not just alternative procreative means and contexts. I suggest that clinging to the assumption of a right to procreate prevents serious scrutiny of reproductive behavior and that, instead of continuing to embrace this assumption, attempts should be made to provide a proper foundation (...) for it. I argue that the focus of procreative activities and discourse on reproductive ethics should be on obligations instead of rights, as rights talk tends to obfuscate recognition of obligations toward others, particularly those who bear the most significant burdens of the procreative process. I examine some possible foundations of a right to procreate as well as John Robertson’s thoughtful account of “procreative liberty” but conclude that at the present time there exists no compelling account of a right to procreate. Finally, I conclude that in the absence of a satisfactory account of a right to procreate, we should refrain from grounding practices or polices on the assumption that there is such a right. (shrink)

The humanities have not enjoyed preeminence in academe since the Scientific Revolution marginalized the old trivium. But they long continued to play a subordinate educational role by helping constitute the distinguishing culture of the elite. Now even this subordinate role is becoming expendable as devotees of the profit motive seek to reduce culture to technological delivery of cultural products (Noble, Digital diploma mills: The automation of higher education, New York: Monthly Review Press, 2003). The result is a deliberate downsizing of (...) the humanities as traditionally understood. Personal preferences aside, is this planned obsolescence morally defensible? Arguably not, if one appeals to traditional ethical norms. But what if its legitimacy is assessed instead according to the quite different norms of capitalism that figure so prominently in university administrators’ rationales as they embrace corporatization? The corporatization of American universities has had multiple effects, and some of these have not been entirely positive. In particular, it has had an adverse effect on the professional status and values of faculty. But how faculty respond to these changes varies according to their institutional situation. (shrink)

The most well-known goal of non-invasive prenatal testing (NIPT) is still to determine whether or not a fetus has trisomy 21. Since women often terminate the pregnancy upon a positive result, there is concern that the use of NIPT contributes to discrimination against persons with disabilities. If this concern is justified, it could have an impact on the wider social acceptability of existing testing practices and their potential further expansion. This paper demonstrates four different versions of the discrimination worry, indicates (...) how international policy papers have reacted to them, and identifies the ethically most relevant feature of the concern. (shrink)

Der Beitrag setzt sich kritisch mit dem Prinzip des prokreativen Wohltuns von Julian Savulescu und seinen Implikationen für den Umgang mit der Präimplantationsdiagnostik auseinander. PB fordert angehende Eltern dazu auf, aus mehreren möglichen zukünftigen Kindern dasjenige auszuwählen, dessen Leben voraussichtlich am besten verlaufen wird. Paare mit Kinderwunsch sind danach zumindest unter bestimmten Umständen moralisch verpflichtet, eine PID in Anspruch zu nehmen, um die Weitergabe genetisch bedingter Krankheiten zu verhindern. Die Auswahl von Embryonen im Rahmen einer PID kann jedoch nur dann (...) mit dem Wohlergehen des zukünftigen Kindes begründet werden, wenn man die entsprechende Wohltunspflicht mit Savulescu und Kahane als „unpersönliche“ moralische Pflicht versteht. PB wirft daher die Frage nach der Relevanz unpersönlicher Erwägungen für Entscheidungen über Fortpflanzung und Familiengründung auf. Gegen Savulescu und Kahane argumentiere ich dafür, reproduktive Verantwortung als einen integralen Aspekt elterlicher Verantwortung und damit als personenbezogene Verantwortung zu deuten, und verteidige diese Konzeption reproduktiver Verantwortung gegen Einwände, die sich aus einem von Savulescu und Kahane konstruierten hypothetischen Szenario – dem Röteln-Beispiel – ergeben. (shrink)

Argumentele referitoare la înțelepciunea continuării experimentării genetice și posibilele efecte eugenice ale ingineriei genetice se încadrează în general în trei domenii: etica biomedicală, moralitatea și religia și legea. Utilizarea potențială a ingineriei genetice a readus în discuții eugenia din trecut în disputele despre bioetică. Există opinii conform cărora și programele de eugenie fără caracter coercitiv ar fi în mod inerent lipsite de etică. Principiul moral central al eticii biomedicale implică o obligație de a conferi beneficii și de a elimina daunele. (...) DOI: 10.13140/RG.2.2.23816.16649. (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)

BackgroundDecisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.MethodsAn online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases (...) similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.ResultsOne hundred and thirty participants completed the survey. The majority (94%) agreed that an infant’s life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant’s ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continueorwithdraw treatment.ConclusionDespite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents’ decisions. These findings may be useful when constructing guidelines for clinical practice. (shrink)

Despite the advent of CRISPR, safe and effective gene editing for human enhancement remains well beyond our current technological capabilities. For the discussion about enhancing human beings to be worth having, then, we must assume that gene-editing technology will improve rapidly. However, rapid progress in the development and application of any technology comes at a price: obsolescence. If the genetic enhancements we can provide children get better and better each year, then the enhancements granted to children born in any given (...) year will rapidly go out of date. Sooner or later, every modified child will find him- or herself to be “yesterday’s child.” The impacts of such obsolescence on our individual, social, and philosophical self-understanding constitute an underexplored set of considerations relevant to the ethics of genome editing. (shrink)

Since 2000, 11 human uterine transplantation procedures (UTx) have been performed across Europe and Asia. Five of these have, to date, resulted in pregnancy and four live births have now been recorded. The most significant obstacles to the availability of UTx are presently scientific and technical, relating to the safety and efficacy of the procedure itself. However, if and when such obstacles are overcome, the most likely barriers to its availability will be social and financial in nature, relating in particular (...) to the ability and willingness of patients, insurers or the state to pay. Thus, publicly funded healthcare systems such as the UK9s National Health Service (NHS) will eventually have to decide whether UTx should be funded. With this in mind, we seek to provide an answer to the question of whether there exist any compelling reasons for the state not to fund UTx. The paper proceeds as follows. It assumes, at least for the sake of argument, that UTx will become sufficiently safe and cost-effective to be a candidate for funding and then asks, given that, what objections to funding there might be. Three main arguments are considered and ultimately rejected as providing insufficient reason to withhold funding for UTx. The first two are broad in their scope and offer an opportunity to reflect on wider issues about funding for infertility treatment in general. The third is narrower in scope and could, in certain forms, apply to UTx but not other assisted reproductive technologies (ARTs). The first argument suggests that UTx should not be publicly funded because doing so would be inconsistent with governments’ obligations to prevent climate change and environmental pollution. The second claims that UTx does not treat a disorder and is not medically necessary. Finally, the third asserts that funding for UTx should be denied because of the availability of alternatives such as adoption and surrogacy. (shrink)

This paper scrutinizes the tension between individuals’ rights and paternalism. I will argue that no normative account that includes rights of individuals can justify hard paternalism since the infringement of a right can only be justified with the right or interest of another person, which is never the case in hard paternalism. Justifications of hard paternalistic actions generally include a deviation from the very idea of having rights. The paper first introduces Tom Beauchamp as the most famous contemporary hard paternalist (...) by outlining his moral theory (principlism) and showing why it, as it stands, has to allow for hard paternalism. Secondly, the paper focuses on the notion of rights within principlism. I will employ traditional theories of rights to make sense of rights in principlism. Unfortunately, this attempt fails. In the third part, then, I claim that rights can only be limited with reference to the rights or interests of others. This structure is the very point of rights, it is their bite. I will argue for this claim and show its implications. The most important implication is that not only principlism, but every normative theory that includes rights of individuals, has to abolish hard paternalism. (shrink)

Research shows that a high majority of parents receiving prenatal diagnosis of intellectual disability terminate pregnancy. They have reasons for rejecting a child with intellectual disabilities—these reasons are, most commonly, beliefs about quality of life for it or them. Without a negative evaluation of intellectual disability, their choice makes no sense. Disability-based abortion has been critiqued through virtue ethics for being inconsistent with admirable moral character. Parental selectivity conflicts with the virtue of acceptingness and exhibits the vice of wilfulness. In (...) this paper I claim that, beyond failures of moral virtue, disability abortion often involves failures of epistemic virtue on the part of parents. I argue two things: parents believe something false, or at least contested, about life with intellectual disability—and they do so because they are not epistemically conscientious. I first explain why a central motivation for disability abortion—that it prevents harm to the child—is mistaken. I next give a brief account of intellectual virtue and culpable ignorance. I then indicate why many parents fail to be intellectually virtuous when choosing to terminate pregnancy. I focus on elimination of intellectual disability and have little to say about physical and sensory impairments. (shrink)

O artigo analisa o caso em que os pais querem ter um filho com alguma deficiência em especial, a surdez. Em primeiro lugar, são apresentados os dois principais argumentos contra essa tentativa, as ideias de que isso prejudicaria o filho e de que os pais não estariam buscando o melhor para ele. Em seguida são apresentados três contra-argumentos a favor da escolha dos pais, que se baseiam nas considerações de que a surdez não é uma deficiência, de que essa escolha (...) aumentaria o vínculo entre pais e filhos e de que ela serviria como uma ação afirmativa a favor dos portadores de deficiências. A seção seguinte contém uma análise do que significa ter uma deficiência, a qual serve de base para o a discussão final que procura mostrar que a escolha dos pais é imoral, pois, limita propositalmente as oportunidades do filho. (shrink)

Although most people believe that it is morally wrong to intentionally create children who have an impairment, it is widely held that we cannot criticize such procreative choices unless we find a solution to Parfit’s non-identity problem. I argue that we can. Jonathan Glover has recently argued that, in certain circumstances, such choices would be self-defeating even if morally permissible. I argue that although the scope of Glover’s argument is too limited, it nevertheless directs attention to a moral defect in (...) the attitudes that could motivate such procreative choices, attitudes that, properly characterized, turn out to be person-affecting in character. I conclude by arguing that prospective parents who want to create a child with an impairment face a dilemma. If they want to avoid the charge that their aim is morally defective, they must deny that the desired impairment is harmful. But this would commit them to endorsing the controversial claim that it is morally permissible or even required to turn normal children into impaired ones. (shrink)

The non-identity problem arises when an intervention or behavior changes the identity of those affected. Delaying pregnancy is an example of such a behavior. The problem is whether and in what ways such changes in identity affect moral considerations. While a great deal has been written about the non-identity problem, relatively little has been written about the implications for physicians and how they should understand their duties. We argue that the non-identity problem can make a crucial moral difference in some (...) circumstances, and that it has some interesting implications for when it is or is not right for a physician to refuse to accede to a patient's request. If a physician is asked to provide an intervention (identity preserving) that makes a person worse off, then such harm provides a good reason for the physician to refuse to provide the intervention. However, in cases where different (identity-altering) interventions result in different people having a better or worse life, physicians should normally respect patient choice. (shrink)

This essay critically engages the work of John Harris and Jürgen Habermas on the issue of genetic engineering. It does so from the standpoint of women's embodied experience of pregnancy and parenting, challenging the choice–chance binary at work in these accounts.

Since the first sex reassignment operations were performed, individual sex has come to be, to some extent at least, a technological artifact. The existence of sperm sorting technology, and of prenatal determination of fetal sex via ultrasound along with the option of termination, means that we now have the power to choose the sex of our children. An influential contemporary line of thought about medical ethics suggests that we should use technology to serve the welfare of individuals and to remove (...) limitations on the opportunities available to them. I argue that, if these are our goals, we may do well to move towards a “post sex” humanity. Until we have the technology to produce genuine hermaphrodites, the most efficient way to do this is to use sex selection technology to ensure that only girl children are born. There are significant restrictions on the opportunities available to men, around gestation, childbirth, and breast-feeding, which will be extremely difficult to overcome via social or technological mechanisms for the foreseeable future. Women also have longer life expectancies than men. Girl babies therefore have a significantly more “open” future than boy babies. Resisting the conclusion that we should ensure that all children are born the same sex will require insisting that sexual difference is natural to human beings and that we should not use technology to reshape humanity beyond certain natural limits. The real concern of my paper, then, is the moral significance of the idea of a normal human body in modern medicine. (shrink)

Reproductive freedom plays a pivotal role in debates on the ethics of procreation. This moral principle protects people’s interests in procreative matters and allows them discretion over whether to have children, the number of children they have and, to a certain extent, the type of children they have. Reproductive freedom’s theoretical and political emphasis on people’s autonomy and well-being is grounded in an individual-centred framework for discussing the ethics of procreation. It protects procreators’ interests and significantly reduces the permissible grounds (...) for interference by third parties. In this article I show that procreative decisions have far-reaching effects on the composition and size of the population. The upshot of considering these effects allows for the appreciation of the inadequacy of a framework that solely considers individual (i.e. procreators’) interests to discuss the ethics of procreation. To address such inadequacy, I assess costs and benefits of past and present proposals to reflect on procreation in such a way as to consider its far-reaching effects. I conclude by arguing that reproductive freedom should be defended as an imperfect but instrumentally necessary tool. This framing would enable those participating in debates on the ethics of procreative decisions to work towards an ethical framework that accounts for the cumulative effects of these decisions. (shrink)

This article brings together two debates in bioethics more substantively than has been the case until now. One is the methodological debate over "principlism," i.e., the theoretical framework for analyzing and solving ethical problems proposed by Beauchamp and Childress in Principles of Biomedical Ethics. The other is the normative debate about reproductive ethics, i.e., procreative rights and obligations in a time of pervasive opportunities for making detailed choices about the properties and capacities of future people. The obvious point of bringing (...) the debates together is to show how they can illuminate each other in fruitful ways consistent with the method of reflective equilibrium endorsed in PBE. Furthermore, discussions of reproductive ethics is almost absent in PBE, making it an interesting "test case" on how principlist theory can have an impact on and be affected by confrontations with new practices and considerations in biomedicine. Reproductive ethics is especially interesting due to the so-called non-identity considerations, which pose a challenge to common morality views on harm to and respect for persons. My focus is mainly on some methodological points about the import of concrete normative discussions for formulating basic normative principles. However, I unfold a number of substantial points in order to demonstrate this. It is my impression that most writers on principlism underestimate the effect of engaging with concrete problems. Specifically, I conclude that reflecting on procreative obligations provides strong reasons for specifying the basic principles in ways that uncover new dimensions of them and not just new applications. _Key words: _principlism, reproductive ethics, non-identity problem, nonmaleficence, respect for persons. (shrink)

A preimplantation genetic test to discriminate between severe and mild autism spectrum disorder might be developed in the foreseeable future. Recently, the philosophers Julian Savulescu and Guy Kahane claimed that there are strong reasons for prospective parents to make use of such a test to prevent the birth of children who are disposed to autism or Asperger’s disorder. In this paper we will criticize this claim. We will discuss the morality of selection for mild autism in embryo selection in a (...) hypothetical in vitro fertilization (IVF) situation where preimplantation genetic diagnosis is performed and compare this with a similar selection for congenital deafness. To do this we first discuss relevant human differences. We then introduce the principle of human capabilities (PC) and compare this principle with the principle of procreative beneficence (PB) introduced by Savulescu and Kahane. We apply the two principles to selection for mild autism and selection for congenital deafness. We argue that PC allows for the selection for mild autism but rules out selection for congenital deafness. PB will not give clear answers; the ruling of PB depends to a large extent on expected social, cultural and political developments. We will argue that PC is preferable to PB. We will discuss arguments for the value of mild autism for individuals who have this condition and argue that they are able to lead a life with human dignity provided autism-friendly social circumstances are present. Neither PC nor PB yields strong reasons for prospective parents to seek to prevent the birth of children who are disposed to mild autism spectrum disorder. (shrink)

This article explores the possibility that there is a parental duty to use preimplantation genetic diagnosis (PGD) for the medical benefit of future children. Using one genetic disorder as a paradigmatic example, we find that such a duty can be supported in some situations on both ethical and legal grounds. Our analysis shows that an ethical case in favor of this position can be made when potential parents are aware that a possible future child is at substantial risk of inheriting (...) a serious genetic condition. We further argue that a legal case for a duty to use PGD for medical benefit can be made in situations in which potential parents have chosen to conceive through in vitro fertilization and know that any children conceived are at substantial risk of having a serious genetic condition. (shrink)

For a long time, human beings have been wishing to improve the genetic composition of their generation and clearing it of some disabilities and defects, and this concern has always been pursued in different ways in different eras. The existence of authoritarian and racist policies and discriminatory methods in the old Eugenics made it easy to rule that it was immoral, but it is somewhat difficult to judge the liberal and new Eugenics because one group, citing the scientific contexts and (...) social contexts resulting from the advances in genetics and the values of liberal societies, dictates its moralization, while the other group, despite these contexts, still retains the relevant ethical challenges.One of these important challenges is the violation of the principle of justice, albeit in a different way than in the past. Injustice in the old Eugenics was discriminatory due to the imposition of a Eugenics program on a particular class, and the manifestation of injustice in the new Eugenics is that by prescribing that its benefits belong to certain classes, it is not possible for the public to benefit from it. The author of this article believes that various ethical challenges still exist in the liberal and modern Eugenics program with a focus on the principle of justice, and the present article seeks to identify, examine and analyze them from a point of view.The findings of this paper are that some of the ethical considerations related to the application of the principle of justice to Eugenics are:Although some solutions may be effective at some level, it is not possible to provide an absolute and general solution for all cases of breeding.Bioethical issues such as Eugenics due to their multifaceted nature, need the consideration of the requirements of various principles and some contextual considerations related to cultural and social conditions and indigenous and regional situations.It is necessary to have appropriate programs to eliminate the factors that incite immoral attitudes and prejudices against the disabled.Despite the context in which it has been made, advocates of liberal Eugenics themselves admit that the challenge of discrimination remains and have an unprecedented impact on genocide and the rise of racism.The well-being of individuals in society depends on the fair distribution of the benefits and resources of Eugenics in a fair social context, and the prescription and distribution of these resources in a society with defective and unjust structures will not have the desired effect. (shrink)

Fair skin is often regarded as a beauty ideal in many parts of the world. Genetic selection for non-disease traits may allow reproducers to select fair skin for the purposes of beauty, and may be justified under various procreative principles. In this paper I assess the ethics of genetic selection for fair skin as a beauty feature. In particular, I explore the discriminatory aspects and demands of such selection. Using race and colour hierarchies that many would find objectionable, I argue (...) that selection for beauty that is underpinned by such hierarchies is not a trivial selection. Given this, I claim that we should not make such selections. (shrink)

Uma forma de compreender o humano é pela sua biologia, a qual pode ser vista como ambígua. Por um lado, há características biológicas correlacionadas a capacidades extremamente especializadas e complexas, as quais abrem possibilidades que lhe são particulares, distinguindo-o ‘positivamente’ dos outros seres vivos. Por outro, como todo ser vivo, há características que tornam a vida humana finita e relativamente vulnerável, as quais costumam ser ‘negativamente’ interpretadas. Em ambos os casos, há características biológicas que, em si, não são boas nem (...) más, apenas são, constituindo uma espécie biológica. No debate bioético, tem havido uma passagem direta de fatos para valores, de modo que o fato do humano ser biologicamente vulnerável justificaria uma opção valorativa pela superação de algumas características biológicas. Postulando uma tensão entre fatos e valores, nosso objetivo é mostrar a pertinência de submeter os meios biotecnocientíficos de melhoramento humano à regulação proveniente da proteção da liberdade de escolha baseada na autocompreensão existencial do indivíduo (que chamaremos de escolha hermenêutica), medida fundamental para evitar ou combater formas de opressão num contexto biopolítico. (shrink)

This article analyzes the main reasons offered by the literature in relation to the question of whether pre-implantation genetic diagnosis and selection should be allowed in the context of assisted reproduction techniques to avoid the birth of children with disabilities. The bioethical literature faces a challenge from the disability discourse. When the oppressive social dimension of disability is taken into account, it results in a series of questions that could challenge the most settled conclusions of the bioethical debate. However, the (...) social model has not been without criticism and one of them, the underestimation of the importance of biological traits origin against a disability of social origin, resonates particularly in the debate on preimplantation genetic selection. (shrink)