Genetic Ethics

Casgevy, the world’s first approved CRISPR-based cell therapy, has been priced at $2.2 million per patient. Although this hefty price tag was widely anticipated, the extremely high cost of this and other cell and gene therapies poses a major ethical issue in terms of equitable access and global health. In this Perspective, we argue that lowering the prices of future CRISPR therapies is an urgent ethical imperative. Although we focus on Casgevy as a case study, much of our analysis can (...) be extrapolated to the controversies over affordable access to other gene and cell therapies. First, we explain why this first-of-its-kind CRISPR therapy might be so expensive. We then analyze the ethical issues of equity and global health of early CRISPR treatments. Next, we discuss potential solutions to lower the prices of CRISPR gene therapies. We conclude that the approval of CRISPR transforms our obligations of justice and compels us to bring future gene therapies to the maximum possible number of patients with serious genetic diseases at affordable prices. (shrink)

If I decide to disclose information about myself, this act may undermine other people’s ability to conceal information about them. Such dependencies are called privacy dependencies in the literature. Some say that privacy dependencies generate moral duties to avoid sharing information about oneself. If true, we argue, then it is sometimes justified for others to impose harm on the person sharing information to prevent them from doing so. In this paper, we first show how such conclusions arise. Next, we show (...) that the existence of such a dependency between the moral significance you are inclined to attribute to privacy dependencies and judgments about permissible self-defense puts pressure on at least some ways of spelling out the idea that privacy dependencies ought to constrain our data-sharing conduct. (shrink)

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

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

Genetics: Medical, Theological and Ethical Aspects Tibbi, Dini ve Etik Boyutlariyla Genetik -/- Genetik bilimi biyolojinin botanik ve zooloji alanındaki uygulamalarını aşarak, sınırlarını önce antropolojiye sonra tıbba doğru hızla genişletmiştir. Öyle ki artık biyokimyadan onkolojiye kadar neredeyse tüm biyomedikal disiplinler, genetiğin kavramları, ilkeleri ve metodolojisi ile aşılanmıştır. Modern tıbbın uygulama alanında geniş bir yer tutan genetik bilimi, bir hastalığa dair risk analizi, teşhis ve tedavi seçeneklerinin belirlenmesi, prognozun değerlendirilmesi gibi klinik uygulamanın farklı evrelerinde söz sahibi olmaktadır. İçinde bulunduğumuz 21. yüzyılda (...) ise bu etkileşim eskisinden daha da güçlü hale gelerek devam etmektedir. Genetik biliminin klinikteki etkilerinin kapsamlı bir şekilde değerlendirildiği bu kitap, tüm dünyada tıbbın seyrini değiştirecek gelişmelere zemin teşkil eden genetik disiplininin olumlu ve olumsuz etkileri hakkında okuyucuya yetkili ağızlardan bilgiler taşımayı ve daha net bir fikir oluşturmayı hedeflemektedir. Kitapta dört ana bölüm bulunmaktadır. İlk bölümde doğum öncesi genetik uygulamalara, ikinci bölümde doğum sonrası (çocuk ve erişkinde) genetik testlere, üçüncü bölümde tıbbi genetiğin sıcak tartışma konusu olan Spinal Müsküler Atrofi’ye (SMA) ve dördüncü bölümde ise genetik bilgiyi felsefi bakışla ele alan makalelere yer verilmiştir. Genetiğin tıp pratiğini değiştirici ve dönüştürücü etkisine multidisipliner bir yaklaşımla ışık tutmayı amaçlayan bu eserin genetik hakkındaki Türkçe literatüre katkıda bulunmasını ümit ediyoruz. (shrink)

The COVID-19 pandemic demonstrated the benefits of international data sharing. Data sharing enabled the health care policy makers to make decisions based on real-time data, it enabled the tracking of the virus, and importantly it enabled the development of vaccines that were crucial to mitigating the impact of the virus. This data sharing is not the norm as data sharing needs to navigate complex ethical and legal rules, and in particular, the fragmented application of the General Data Protection Regulation (GDPR). (...) The introduction of the draft regulation for a European Health Data Space (EHDS) in May 2022 seeks to address some of these legal issues. If passed, it will create an obligation to share electronic health data for certain secondary purposes. While there is a clear need to address the legal complexities involved with data sharing, it is critical that any proposed reforms are in line with ethical principles and the expectations of the data subjects. In this paper we offer a critique of the EHDS and offer some recommendations for this evolving regulatory space. (shrink)

This chapter examines whether high prices for gene therapies are justified and whether the problems associated with high prices can be solved by the "pay for performance" (P4P) reimbursement model. To this end, we first describe how prices for new drugs, including gene therapies, are set in Germany (section 2.). P4P is then presented as an example of a reimbursement model (section 3.). The subsequent ethical analysis (section 4.) first examines whether P4P models can sustainably guarantee the right to health (...) and healthcare for all people (section 4.1; cf. on the "sustainable right to health" already Alex, 2021). It is then shown that cost-benefit analyses for setting prices for new gene therapies must be viewed critically from an ethical perspective and pose a problem for equity of access and thus also for the sustainable guarantee of a right to health (section 4.2). The final question is whether P4P is compatible with the idea of human dignity (Article 1 I 1 of the German Basic Law) (section 4.3; cf. already König et al., 2020). -/- Alex, K. (2021): Ethical conceptualization of a sustainable right to health(care). In: Schildmann, J. et al. (eds.): Defining the value of medical interventions. Normative and empirical challenges. Kohlhammer, Stuttgart: 29-48. PMID: 36256802 König, J. et al. (2020): Am individuellen Therapieergebnis orientierte Erstattungsverfahren in der Onkologie: ethische Implikationen am Beispiel der CAR-T-Zelltherapie. In: Ethik Med 32: 85–92. doi: 10.1007/s00481-020-00565-3. (shrink)

Distributive justice is one of the central questions of contemporary moral and political philosophy. Discussions on this topic are often presented as a confrontation between two groups of thinkers: libertarians and luck egalitarians. The former emphasize the dependence of the existing distribution on the individual choice and personal responsibility of people, and therefore are skeptical about various redistribution programs. The latter, on the contrary, emphasize the influence of morally arbitrary luck on the economic situation of people, and therefore welcome redistributive (...) measures to compensate for this brute luck. Left-libertarian claims to reconcile these two types of moral considerations. The classical left-libertarian point of view seeks to offset the influence of brute luck through an egalitarian distribution of the benefits of owning natural resources that are independent of anyone’s choice and responsibility. However, this position does not sufficiently take into account the influence of other factors of brute luck and, in particular, genetic endowments on the distribution of economic wealth. This article discusses three approaches that allow left-libertarians to take into account the factor of genetic luck in interpersonal distribution. First, it is Hillel Steiner’s proposal to attribute genetic information to natural resources, the benefits of which are subject to egalitarian redistribution. Second, it is the concept of equal opportunity for welfare by Peter Vallentyne, Michael Otsuka and Eric Roark. Third, it is the universal dominance criterion of Philippe Van Parijs and Kasper Ossenblok. The first two approaches face a number of moral and practical difficulties, but the third approach is able to overcome them. Thus, the universal dominance criterion is the most promising way to reconcile left-libertarianism and justice in the distribution of genetic endowments. (shrink)

Research in pharmacogenomics and precision medicine has recently introduced the concept of Polygenic Scores (PGSs), namely, indexes that aggregate the effects that many genetic variants are predicted to have on individual disease risk. The popularity of PGSs is increasing rapidly, but surprisingly little attention has been paid to the idealisations they make about phenotypic development. Indeed, PGSs rely on quantitative genetics models and methods, which involve considerable theoretical assumptions that have been questioned on various grounds. This comes with epistemological and (...) ethical concerns about the use of PGSs in clinical decision-making. In this paper, I investigate to what extent idealisations in genetics models can impact the data gathering and clinical interpretation of genomics findings, particularly the calculation and predictive accuracy of PGSs. Although idealisations are considered ineliminable components of scientific models, they may be legitimate or not depending on the epistemic aims of a model. I thus analyse how various idealisations have been introduced in classical models and progressively readapted throughout the history of genetic theorising. Notably, this process involved important changes in the epistemic purpose of such idealisations, which raises the question of whether they are legitimate in the context of contemporary genomics. (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)

Biohacking is a grass-roots movement that brings the knowledge and experimen-tal practice of biological sciences to a non-specialized public. This article seeks to identify biohacking as a type of transhumanism and not just as a movement influenced by the latter. To do so, it examines the constitution, history, practi-ces, and moral codes of the biohacker movement. Subsequently, it compares the results with the definition of transhumanism, finding points of similarity in the hypotheses of both, as well as an adaptation of (...) transhumanist values to biohac-king. It concludes by identifying biohacking as a type of transhumanism. (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)

Short overview of the From Small Beginnings Project and its relevance for resisting eugenics in contemporary society.

-/- Policy regulations of ethically controversial genetic technologies should, on the one hand, be based on ethical principles. On the other hand, they should be socially acceptable to ensure implementation. In addition, they should align with ethical theory. Yet to date we lack a reliable and valid scale to measure the relevant ethical judgements in laypeople. We target this lacuna. -/- We developed a scale based on ethical principles to elicit lay judgments: the Genetic Technologies Questionnaire (GTQ). In two pilot (...) studies and a pre-registered main study, we validated the scale in a representative sample of the US population. -/- The final version of the scale contains 20 items but remains highly reliable even when reduced to five. It also predicts behaviour; for example, ethical judgments as measured by the GTQ predicted hypothetical donations and grocery shopping. In addition, the GTQ may be of interest to policymakers and ethicists because it reveals coherent and ethically justified judgments in laypeople. For instance, the GTQ indicates that ethical judgments are sensitive to possible benefits and harms (in line with utilitarian ethics), but also to ethical principles such as the value of consent-autonomy. -/- In conclusion, the GTQ can be recommended for research in both experimental psychology and applied ethics, as well as a tool for ethically and empirically informed policymaking. (shrink)

In recent years, genetically engineered (GE) mosquitoes have been proposed as a public health measure against the high incidence of mosquito-borne diseases among the poor in regions of the global South. While uncertainties as well as risks for humans and ecosystems are entailed by the open-release of GE mosquitoes, a powerful global health governance non-state organization is funding the development of and advocating the use of those bio-technologies as public health tools. In August 2016, the US Food and Drug Agency (...) (FDA) approved the uncaged field trial of a GE Aedes aegypti mosquito in Key Haven, Florida. The FDA’s decision was based on its assessment of the risks of the proposed experimental public health research project. The FDA is considered a global regulatory standard setter. So, its approval of the uncaged field trial could be used by proponents of GE mosquitoes to urge countries in the global South to permit the use of those bio-technologies. -/- From a public health ethics perspective, this paper evaluates the FDA’s 2016 risk assessment of the proposed uncaged field trial of the GE mosquito to determine whether it qualified as a realistic risk evaluation. -/- The FDA’s risk assessment of the proposed uncaged field trial did not proximate the conditions under which the GE mosquitoes would be used in regions of the global South where there is a high prevalence of mosquito-borne diseases. -/- Given that health and disease have political-economic determinants, whether a risk assessment of a product is realistic or not particularly matters with respect to interventions meant for public health problems that disproportionately impact socio-economically marginalized populations. If ineffective public health interventions are adopted based on risk evaluations that do not closely mirror the conditions under which those products would actually be used, there could be public health and ethical costs for those populations. (shrink)

This study takes off from the ethical problem that racism grounded in population genetics raises. It is an analysis of four standard scientific responses to the problem of genetically motivated racism, seen in connection with the Human Genome Diversity Project (HGDP): (1) Discriminatory uses of scientific facts and arguments are in principle ‘misuses’ of scientific data that the researcher cannot be further responsible for. (2) In a strict scientific sense, genomic facts ‘disclaim racism’, which means that an epistemically correct grasp (...) of genomics should be ethically justified. (3) Ethical difficulties are issues to be ‘resolved’ by an ethics institution or committee, which will guarantee the ethical quality of the research scrutinized. (4) Although population genetics occasionally may lead to racism, its overall ‘value’ for humankind justifies its cause as a desirable pursuit. I argue that these typical responses to genetically motivated racism supervene on a principle called the ‘ethic of knowledge’, which implies that an epistemically correct account has intrinsic ethical value. This principle, and its logically related ideas concerning the ethic of science, effectively avoids a deeper ethical question of responsibility in science from being raised. (shrink)

As technology advances, the demand for innovative instructional materials also increases. As a result, the Department of Education urges teachers to develop instructional materials. This study was conducted at Bulusan National High School, Bulusan, Sorsogon, Philippines SY 2018-2019 which was aimed to develop gamified instructional materials in genetics that would aid in teaching and learning process of grade 12 STEM students. The developed gamified materials were collectively called the GIM in Genetics which is comprised of two parts; namely, Student’s Portfolio (...) and Gamified Lesson Plans. The GIM was anchored on the Teacher’s Guide provided by DepEd. Further, it utilized different game elements, to wit: game mechanics, badges, power cards, scoring system, levels, and leaderboards to deliver innovative teaching strategy and quality education. This paper suggests the development of various innovative teaching strategies and instructional materials as well as its utilization across different fields and subject areas. (shrink)

Instructional material is an integral part of teaching and learning process. Validating instructional materials is imperative to ensure quality before widespread utilization. This study validated the developed Gamified Instructional Material (GIM) in genetics for grade 12 STEM students. It employed the descriptive-developmental research design involving 41 STEM students and 11 Biology education experts chosen through purposive sampling. Findings revealed that students and experts strongly agreed that the GIM satisfied the criteria for a sound and valid instructional material. Further, the significant (...) change in the pretest and posttest scores of students indicated an improvement of their knowledge in genetics. It is recommended that the GIM be used as supplementary instructional material in teaching genetics. (shrink)

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

Merleau-Ponty claims that the idea of objective knowledge is supported by "our reveries." My aim in this paper is to explore this argument with respect to the idea of health. As a case study, I focus on bioethical issues surrounding return of results of incidental variants with respect to the use of genetic and genomic screening technologies (GSTs) in newborn and pediatric contexts. Drawing on a range of Merleau-Ponty’s texts, I argue that this case suggests the modern idea of health (...) to turn largely on the desire for control over one’s fate. More specifically, this is a desire for control aimed at assuring that the meaning of one’s life will stay the same as indexed by one’s ability expectations. I term this a desire for existential homeostasis. I further contend that the desire for existential homeostasis is underwritten by multiple sorts of privilege and, insofar as it informs health as a reverie, it is a desire that is particularly apt to contribute to and maintain injustice in both theory and practice. (shrink)

I discuss this collection of published and unpublished essays on religion and ethics by GEM Anscombe edited by Mary Geach and Luke Gormally. My main doubt concerns the criteria on which papers have been included in this volume. I argue that, while part of the material included typically belongs to a discussion between believers, some of these are good examples of applied ethics with no direct link with the Christian faith and addressed to a universal audience of reasonable partners of (...) conversation. (shrink)

Jeremy Williams has argued that if we are committed to a liberal pro-choice stance with regard to selective abortion for disability, we will be unable to justify the prohibition of sex selective abortion. Here, I apply his reasoning to selective abortion based on other traits pregnant women may decide are undesirable. These include susceptibility to disease, level of intelligence, physical appearance, sexual orientation, religious belief and criminality—in fact any traits attributable to some degree to a genetic component. Firstly, I review (...) Williams’ argument, which claims that if a woman is granted the right to abort based on fetal impairment, then by parity of reasoning she should also be granted the right to choose sex selective abortion. I show that these same considerations that entail the permissibility of sex selective abortion are also applicable to genetic selection abortion. I then examine the objections to sex selective abortion that Williams considers and rejects, and show that they also lack force against genetic selection abortion. Finally, I consider some additional objections that might be raised, and conclude that a liberal pro-choice stance on selective abortion for disability entails the permissibility of selective abortion for most genetic traits. (shrink)

Public attitudes concerning cognitive enhancements are significant for a number of reasons. They tell us about how socially acceptable these emerging technologies are considered to be, but they also provide a window into the ethical reasons that are likely to get traction in the ongoing debates about them. We thus see Conrad et al’s project of empirically investigating the effect of metaphors and context in shaping attitudes about cognitive enhancements as both interesting and important. We sketch what we suspect is (...) a central theme that runs through these public attitudes, but that Conrad el al’s paper elides. We were disappointed that they did not more directly explore the efficacy of frames and metaphors associated with the values of authenticity and self-expression. This seems like a missed opportunity. Based on the premise that individualistic values enjoy centrality in Western and especially North American culture (e.g. Taylor 1989), we hypothesize that metaphors and frames informed by those values will be especially effective in shaping public attitudes. That is, when various kinds of novel enhancement are described as allowing people to more fully express themselves, or as helping people overcome obstacles to being authentic and true to their inner sense of themselves, those enhancements will be considered justified, and their use more likely to be viewed as socially acceptable by the public. We support our contention by drawing on work by Elliott (2004, 2011, c.f. Kadlac 2018), and discuss how this study, and others modeled on it, might shed light on our hypothesis. (shrink)

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

With the recent report of a live birth after use of Mitochondrial replacement therapy, sometimes called ‘Three-parent IVF’, the clinical application of the technique is fast becoming a reality. While the United Kingdom allows the procedure under regulatory scrutiny, it remains effectively outlawed in many other countries. We argue that such prohibitions may violate individuals’ procreative rights, grounded in individuals’ interest in genetic affinity. The interest in genetic affinity was recently endorsed by Singapore’s highest court, reflecting an emphasis on the (...) importance of biological ties found across the globe. We apply that reasoning to make the case for a right to ‘Three-parent IVF’. (shrink)

The majority of German specialists in reproductive medicine opposes preimplantation sex selection for nonmedical reasons while recommending preimplantation sex selection for medical reasons, e.g. X-linked diseases like haemophilia.

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

A current advance within the agricultural industry is the use of genetic engineering to produce novel crops for food production. This technology raises questions about how societies should position themselves with respect to genetically modified (GM) crop development and implementation; namely, how should the potentials and risks of this technology be evaluated? We argue that current methods to evaluate the risks and benefits of GM crops are inadequate and not conducive to the strategic development of this technology, where a way (...) to ameliorate technology assessments for GM crops is to include farmers in the research process of evaluating these crops prior to their commercialization. However, particularities concerning the ethical status of such research require special consideration and vigilance. For example, in such technology assessment initiatives, farmers would occupy both the roles of research participant and research investigator. Other particularities surface due to factors related to the nature of GM crops. These particularities are examined with reference to concepts drawn from the field of research ethics, namely informed consent, compensatory decisions, and issues of participant inclusion/exclusion. (shrink)

The genomics “revolution” is spreading. Originating in the molecular life sciences, it initially affected a number of biomedical research fields such as cancer genomics and clinical genetics. Now, however, a new “wave” of genomic bioinformation is transforming a widening array of disciplines, including those that address the social, historical and cultural dimensions of human life. Increasingly, bioinformation is affecting “human sciences” such as psychiatry, psychology, brain research, behavioural research (“behavioural genomics”), but also anthropology and archaeology (“bioarchaeology”). Thus, bioinformatics is having (...) an impact on how we define and understand ourselves, how identities are formed and constituted, and, finally, on how we (on the basis of these redefined identities) assess and address some of the more concrete societal issues involved in genomics governance in various settings. This article explores how genomics and bioinformation, by influencing research agendas in the human sciences and the humanities, are affecting our self-image, our identity, the way we see ourselves. The impact of bioinformation on self-understanding will be assessed on three levels: (1) the collective level (the impact of comparative genomics on our understanding of human beings as a species), (2) the individual level (the impact of behavioural genomics on our understanding of ourselves as individuals), and (3) the genealogical level (the impact of population genomics on our understanding of human history, notably early human history). This threefold impact will be assessed from two seemingly incompatible philosophical perspectives, namely a “humanistic” perspective (represented in this article by Francis Fukuyama) and a “post-humanistic” one (represented by Peter Sloterdijk). On the basis of this analysis it will be concluded that, rather than focussing on human “enhancement” by adding or deleting genes, genome-oriented practices of the Self will focus on using genomics information in the context of identity-formation. Genomic bioinformation will increasingly be built into our self-images and used in order to tailor and adapt our practices of Self to our “personalised” genome. We will keep working on ourselves, no doubt, not by modifying our genomes, but rather by fine-tuning our behaviour. What we are experiencing is a bioinformatisation of the life-world. Genomics-based technologies will increasingly pervade our daily lives, our autobiographies and narratives, as well as our anthropologies, rather than our genomes as such. (shrink)

Ethical debates about liberal eugenics frequently focus on the supposed unnaturalness of its means and possible harm to autonomy. I present a Nietzsche-inspired critique focusing on intention rather than means and harm to abilities rather than to autonomy. I first critique subjective eugenics, the selection of extrinsically valuable traits, drawing on Nietzsche’s notion of ‘slavish’ values reducible to the negation of another’s good. Subjective eugenics slavishly evaluates traits relative to a negatively evaluated norm (eg, above-average intelligence), disguising a harmful intention (...) to diminish the relative value of that norm. I then argue there is no objective form of eugenics on the Nietzschean ground that abilities are not valuable intrinsically; they are valuable only if one possesses the relative power to exercise them. Abilities frustrated by conflict with other abilities or environment are harmful, while disabilities that empower one’s other abilities are beneficial. Consequently, all forms of eugenics are subject to the prior ethical critique of subjective eugenics. (shrink)

This open-access editorial discusses confronting silences in different disciplinary contexts, such as science and technology studies, cultural anthropology, and philosophy. It has a focus on race and concludes with thoughts about Indigenous expertise, the Australian referendum on the Indigenous Voice, to parliament, and racism.

Purpose/Background. The present research focuses on the debate on transhumanism/bioconservatism from the perspective of empirical bioethics, that is, making use of em-pirical evidence in the process of moral reasoning. Its objective is to propose a metho-dological guide for the approach and resolution of moral problems concerning human enhancement. Methodology/Approach. The method Step-wise Ethical Human Enhancemet (SWEH) is proposed. It is a guide consisting of 11 questions that are the result of the adaptation of the guidelines for identifying a human enhancement (...) procedure as ethical developed by Julian Savulescu to the method of Step-wise Empirical Contributions elaborated by Pascal Borry. An applicative example on the morality of biohacking RFID implants is provided. Results/Findings. SWEH proposes that human enhancement procedures might be approached as specific problems and that the identified moral norm might be rewritten as a descriptive proposition that serves as a hypothesis that will be evaluated in the light of empirical evidence. The evaluation of the proposition, and thus of moral reasoning, will be done with the help of the information gathered by the 11 questions. Discussion/Conclusions/Contributions. SWEH can serve to provide a first answer on the morality of a specific human enhancement procedure, but not an absolute one, as the result may vary depending on the information obtained in the future. It also highli-ghts gaps in empirical research related to the procedure it addresses. The method is a first methodological guide that could be revised and improved. (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)

ENG: We all have our own ideas about what it is like to be intelligent. Indeed, even the experts disagree on this topic. This has generated diverse theories on the nature of intelligence and its genetic and environmental bases. Many scientific and philosophical questions thus remain unaddressed: is it possible to characterize intelligence in scientific terms? What do IQ tests measure? How is intelligence influenced by genetics, epigenetics, and the environment? What are the ethical and social implications of the research (...) on this topic? This book aims to provide the readers with the conceptual resources to critically analyze scientific findings and orientate themselves in this multi-faceted debate across biology, psychology, neuroscience, philosophy, and anthropology. -/- ITA: Ognuno di noi ha una propria idea di cosa significhi essere intelligenti, tanto che anche gli scienziati esperti in materia hanno opinioni differenti al riguardo. Ciò ha contribuito a generare teorie contrastanti sulla natura dell’intelligenza e su quali siano le sue basi genetiche e ambientali. Non è un caso, dunque, che diverse domande scientifiche e filosofiche restino ancora aperte: è possibile caratterizzare scientificamente l’intelligenza? Cosa misurano i test del QI? In che modo genetica, epigenetica e ambiente influenzano l’intelligenza? Quali sono le implicazioni etiche e sociali della ricerca sull’argomento? Oltre ad analizzare questi problemi, il testo intende fornire gli strumenti concettuali necessari per leggere criticamente i dati scientifici e orientarsi in uno sfaccettato e affascinante dibattito a cavallo tra biologia, psicologia, neuroscienze, filosofia e antropologia. (shrink)

Ethical debates about liberal eugenics frequently focus on the supposed unnaturalness of its means and possible harm to autonomy. I present a Nietzsche-inspired critique focusing on intention rather than means and harm to abilities rather than to autonomy. I first critique subjective eugenics, the selection of extrinsically valuable traits, drawing on Nietzsche’s notion of ‘slavish’ values reducible to the negation of another’s good. Subjective eugenics slavishly evaluates traits relative to a negatively evaluated norm (eg, above-average intelligence), disguising a harmful intention (...) to diminish the relative value of that norm. I then argue there is no objective form of eugenics on the Nietzschean ground that abilities are not valuable intrinsically; they are valuable only if one possesses the relative power to exercise them. Abilities frustrated by conflict with other abilities or environment are harmful, while disabilities that empower one’s other abilities are beneficial. Consequently, all forms of eugenics are subject to the prior ethical critique of subjective eugenics. (shrink)

This commentary continues an exchange on eugenics in Monash Bioethics Review between Anomaly (2018), Wilson (2019), and Veit, Anomaly, Agar, Singer, Fleischman, and Minerva (2021). The eponymous question, “Can ‘Eugenics’ be Defended?”, is multiply ambiguous and does not receive a clear answer from Veit et al.. Despite their stated desire to move beyond mere semantics to matters of substance, Veit et al. concentrate on several uses of the term “eugenics” that pull in opposite directions. I argue, first, that Veit et (...) al. (2021) makes much the same error as does Anomaly (2018) in characterizing eugenics; second, that the paper misunderstands the relationship between eugenics and enhancement; and third, that it distorts the views expressed in my “Eugenics Undefended”. (shrink)

This paper begins by saying enough about eugenics to explain why disability is central to eugenics (section 2), then elaborates on why cognitive disability has played and continues to play a special role in eugenics and in thinking about moral status (section 3) before identifying three reasons why eugenics remains a live issue in contemporary bioethics (section 4). After a reminder of the connections between Nazi eugenics, medicine, and bioethics (section 5), it returns to take up two more specific clusters (...) of issues at the intersection of eugenics, disability, and bioethics. These concern questions of life, death, and reproductive value (section 6) and the value of standpoint theory and epistemology for understanding some of the tensions between bioethics and disability in light of a shared eugenic past (section 7). (shrink)

How have and how might philosophers contribute to linking disability and activism in these peri-COVID-19 times, especially in forms of public engagement that go beyond podcasted talks and articles aimed at a public audience? How do we harness philosophical thinking to contribute positively to those living with disability whose vulnerabilities are heightened by this pandemic and the ableism highlighted by collective responses to it?

This chapter briefly reviews the role of race (as a concept) in the history of theorizing the posthuman, engages with existing discussions of race as technology, and explores the significance of understanding race as technology for the field of posthumanism. Our aim is to engage existing literature that posits racialized individuals as posthumans and to consider how studying race might inform theories of the posthuman.

Imagine a world where everyone is healthy, intelligent, long living and happy. Intuitively this seems wonderful, albeit unrealistic. However, recent scientific developments in genetic engineering, namely CRISPR/Cas bring the question into public discourse, how the genetic enhancement of humans should be evaluated morally.

This is the prologue to a collection of essays on eugenics and psychiatry.

This paper explores the relationship between eugenics, disability, and dehumanization, with a focus on forms of eugenics beyond Nazi eugenics.

This short article provides an overview of the series of eugenic family studies that began in the 1870s in the United States and that were influential in establishing eugenics as a 20th-century movement and ideology.