This chapter contains sections titled: Bioethics Genethics Medical Ethics.

The successes of the human genome project and genomics research programs portend great potential to improve upon health and enhance life. As scientific advancements continue, bioethicists and policy makers deliberate over the social and ethical implications of genetic and genomic technologies and information (ggT/I). The application of ggT/I to human reproduction raises conceptual and moral questions about being human and the links between offspring, parents, and society. Given ggT/I’s ability to significantly affect the biological constitution of humans and future human (...) generations thinking through such issues is fundamental to ethical and policy analysis. By means of a systematic literature review and accompanying content analysis, this paper highlights the dominant ethical concerns raised within recent bioethics discourse over the use of ggT/I for human reproduction. Based on these findings it aso offers a framework through which, and demarcates where, religious perspectives can add value to genethics debates and policy deliberation. (shrink)

Unprecedented advances in medicine, genetic engineering, and demographic forecasting raise new questions that strain the categories and assumptions of traditional ethical theories. Heyd's approach resolves many paradoxes in intergenerational justice, while offering a major test case for the profound problems of the limits of ethics and the nature of value.

Unprecedented advances in medicine, genetic engineering, and demographic forecasting raise new questions that strain the categories and assumptions of traditional ethical theories. Heyd's approach resolves many paradoxes in intergenerational justice, while offering a major test case for the profound problems of the limits of ethics and the nature of value.

Unprecedented advances in medicine, genetic engineering, and demographic forecasting raise new questions that strain the categories and assumptions of traditional ethical theories. Heyd's approach resolves many paradoxes in intergenerational justice, while offering a major test case for the profound problems of the limits of ethics and the nature of value. This title is part of UC Press's Voices Revived program, which commemorates University of California Press’s mission to seek out and cultivate the brightest minds and give them voice, reach, and (...) impact. Drawing on a backlist dating to 1893, Voices Revived makes high-quality, peer-reviewed scholarship accessible once again using print-on-demand technology. This title was originally published in 1992. (shrink)

The discursive explosion that was provoked by the new genetics could support the impression that the ethical and social problems posed by the new genetics are somehow exceptional in their very nature. According to this view we are faced with special ethical and social problems that create a challenge so fundamental that the special label of genethics is needless to justify. The historical account regarding the evolution of the gene concepts could serve us to highlight the limits of what (...) we know about genes and what we can do with genes. The widespread notion about the exceptionality of genetic knowledge and its applicative possibilities is hardly justifiable and leads to misunderstandings regarding the conceptualization of the ethical and social problems we might face. Following a more realistic interpretation of the role of genes in human life we might avoid a whole set of fictive dilemmas and counterproductive regulatory efforts in bioethics. Bioethical discourse should move from the gene-centered scientific discourse toward the more sophisticated and complex discourses where human development represented as a matter of complex interactions between genomes and environments, between genes, educational factors, nutritional regimes, and other different developmental resources. If a gene is seen as one among the different developmental resources that are shaping a given human trait then both genethics and genetic exceptionalism could hardly be represented as a justified approach in discussing the ethical and social problems of genetics. (shrink)

“Genethics” is a neologism probably best kept within scare quotes. Yet now that genethics has a Companion—Companion to Genethics, edited by Justine Burley and John Harris, Oxford, Blackwell, 2002, 489 pages, £65—it would appear that we can no longer keep our gloves on when handling the term. Burley and Harris’s enormous collection contains 34 articles, an introduction and an afterword.*Most of the contributions are short , many are new, a few are lifted from earlier work and some (...) are lightly revised versions of earlier pieces. Topics range from the genetics of old age, to the Darwin wars and biotech patenting. The collection’s length and scope make it impossible to review comprehensively. In brief, many of the contributions are excellent. The pieces towards the end of the volume—Sorrell’s on insurance, Munzer’s on patents and property rights, Steiner’s on self ownership, to mention a few—are especially good at bringing serious philosophical analysis to questions of immediate political concern. A high proportion of the essays are devoted to issues of commercialising the genome and genetic research, and these are all good. The guides to further reading that come at the end of each article are also useful, although it is hard not to grin at an astonishing guide at the end of Dawkins’s piece on genetic determinism that includes all and only books by Richard Dawkins.Rather than arbitrarily selecting an article or two for in depth treatment, or saying something intolerably brief about each of the contributions, let me instead use this essay to offer some reflections on the existence of the volume. What, exactly, is genethics, that it requires a companion? The obvious answer to that question is that genethics is the study of the ethical issues that arise out of the science of …. (shrink)

Can a person be harmed or wronged by being brought into existence? Can a person be benefited by being brought into existence? Following David Heyd, I refer to these questions as “genethical questions”. This chapter examines three broad approaches to genethics: the no-faults model, the dual-benchmark model, and the parity model. The no-faults model holds that coming into existence is not properly subject to moral evaluation, at least so far as the interests of the person that is to be (...) brought into existence are concerned. The dual benchmark model allows that coming into existence can be subject to moral evaluation, but holds that our judgments about the kinds of lives worth starting ought not be aligned with our judgments about the kinds of lives worth sustaining. I argue against both the no-faults and dual benchmark models. In their place, I argue for a parity approach to genethics, according to which our judgments about the conditions under which life is worth creating ought to be constrained by our judgments about the conditions under which life is worth continuing. (shrink)

The UK Genethics Club was established in November 2001 in order to provide a national forum of ethics support for the profession of clinical genetics in the UK. The forum brings together health professionals, medical ethicists and lawyers and support is provided through detailed discussion of cases and sharing of good practice. Clinical genetics professionals had previously voiced concerns about making extremely difficult ethical decisions, with profound implications, in something of a vacuum. Professionals saw a lack of guidance in (...) the area and lack of time for discussion of difficult cases as reasons for this. This paper describes the origins of the group and gives (anonymized) examples of some of the types of issues discussed. (shrink)

It was only a matter of time before the portmanteau term “genethics” would be coined and a whole field within bioethics delineated. The term can be dated back at least to 1984 and the work of James Nagle, who claims credit for inventing the word, which he takes “to incorporate the various ethical implications and dilemmas generated by genetic engineering with the technologies and applications that directly or indirectly affect the human species.” In Nagle’s phrase, “Genethic issues are instances (...) where medical genetics and biotechnology generate ethical problems that warrant societal deliberation.” The great promises and terrific threats of developments in scientific understanding of genetics, and the power to enhance, modify, or profit from the knowledge science breeds, naturally offer a huge range of issues to vex moral philosophers and social theorists. Issues as diverse as embryo selection and the quest for immortality continue to tax analysts, who offer reasons as varied as the matters that might be dubbed “genethical” for or against the morality of things that are actually possible, logically possible, and even just tenuously probable science fiction. (shrink)

This case is another in a series intended to highlight the new questions emerging from advances in mapping the human genome and the application of genetic findings to clinical practice. The National Human Genome Research Institute, a component of the National Institutes of Health, by law is directed to designate a portion of its annual budget to furthering understanding of the ethical, legal, and social questions emerging from research on the human genome. As part of the effort, the Institute supports (...) research by scientists and scholars around the nation with the aim of clarifying and resolving the tough ethical and research choices facing this endeavor. But recently it has launched an intramural program, which is expected to take a catalytic role in grappling with the array of issues the researchers face in carrying out investigations in human genetics. (shrink)

The completion of the human genome project in 2000 dramatically emphasized the imminent success of the genetic revolution. The ethical and social consequences of this scientific development are immense. From human reproduction to life-extending therapies, from the impact on gender and race to public health and public safety, there is scarcely a part of our lives left unaffected by the impact of the new genetics. A Companion to Genethics is the first substantial study of the multifaceted dimensions of the (...) genetic revolution and its philosophical, ethical, social, and political significance. It brings together the best and most influential contemporary writing about genethics. Newly commissioned essays from prominent figures in the current debate provide a wide-ranging and fascinating scholarly analysis of all the issues that arise from this explosive science. (shrink)

This chapter contains sections titled: Genes, Identity and Ethics Identity‐affecting Genetic Interventions Identity‐preserving Genetic Interventions Justice References and Further Reading.

This is intended to be a foundational study in what the author claims is a new branch of ethics, "genethics," which has as its distinctive subject matter three sorts of questions: Should some human being or group of human beings come into existence? If so, how many? Of these, what should they be like? Heyd maintains that these questions are posed for the first time, or in a distinctive way, because of developments in biotechnology, and that they cannot be (...) resolved within any of the major types of ethical theory. Contractarian theory is useless, for either we include future generations as parties to the contract or not: if we do, we suppose their existence and beg the question; if we do not, then we are bound to appeal to noncontractarian considerations. Kantian theory obliges us to treat persons as ends, but genethics is concerned with the prior question of whether there should be persons to treat thus. Moreover, principles of respect and autonomy, as well as the categorical imperative, seem to have no natural application to genethic cases. Utilitarianism both in its total- and average-welfare maximizing forms is beset with familiar difficulties. Heyd mentions Aristotelian virtue ethics only to dismiss it as a viewpoint "which cannot be of much help in the direct analysis of procreation". This is odd, however, since Aristotle gives ample attention to issues of justice and friendship across generations. (shrink)

Die Berufung auf das Prinzip der Menschenwürde ist im gegenwärtigen Diskurs über die Ethik der Genetik weit verbreitet, insbesondere wenn es darum geht, ein schlagkräftiges Argument gegen bestimmte Formen der genetischen Forschung und Praxis wie der Genmanipulation und des Klonens zur Verfügung zu haben. Das Prinzip der Menschenwürde ist indes sehr vage und unbestimmt. Der Beitrag verfolgt die Entwicklung des Prinzips der Menschenwürde von einem gesellschaftlichen Konzept - der Art und Weise, wie Individuen einander betrachten - zu den modernen Konzepten (...) eines inneren Wertes des Menschen als Mensch. Das moderne Verständnis des Konzepts der Menschenwürde stammt von Pico della Mirandola und - selbstverständlich von Kant. Die zentrale These des Beitrags läuft darauf hinaus, daß die genetische Forschung und Praxis in der Regel das Prinzip der Menschenwürde nicht verletzt, und zwar weder auf der Ebene der Individuen noch auf der Ebene der menschlichen Gattung. Genetische Forschung und Praxis benutzt Menschen nicht bloß als Mittel, ohne sie als Zweck zu achten, gentechnologische Kontrolle unterminiert nicht den inneren Wert des Menschen und gentechnische Analyse als solche beeinträchtigt nicht die Integrität von Individuen. Viele der Einwände gegen die Gentechnologie, die sich auf das Prinzip der Menschenwürde berufen, beruhen auf der sogenannten Theorie absoluter, nicht personenbezogener Werte, die behauptet, daß Werte in abstracto auf die Welt angewendet werden können. Diese Sicht ist typischerweise in der religiösen Tradition verwurzelt. Wenn wir demgegenüber von einer "personenbezogenen" Konzeption der Werte ausgehen, was bedeutet, daß Werte nur auf aktuell existierende Personen bezogen werden können, verliert die Argumentation gegen genetische Interventionen das meiste von ihrer Überzeugungskraft. Auf dieser zweiten Konzeption basiert der vorliegende Beitrag. (shrink)

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

This correspondence offers a counterpoint to the recent article of Dov Greenbaum and Mark Gerstein defending the pertinence of GATTACA 25 years after its release. I develop three arguments for not being enthusiastic about dystopian representations in the ethical, legal, and social discussion of genetic technologies and genomic sciences.

Early last year, the GenEthics Consortium (GEC) of the Washington Metropolitan Area convened at George Washington University to consider a complex case about genetic testing for Alzheimer disease (AD). The GEC consists of scientists, bioethicists, lawyers, genetic counselors, and consumers from a variety of institutions and affiliations. Four of the 8 co-authors of this paper delivered presentations on the case. Supplemented by additional ethical and legal observations, these presentations form the basis for the following discussion.

This article argues that existing approaches to programming ethical AI fail to resolve a serious moral-semantic trilemma, generating interpretations of ethical requirements that are either too semantically strict, too semantically flexible, or overly unpredictable. This paper then illustrates the trilemma utilizing a recently proposed ‘general ethical dilemma analyzer,’ GenEth. Finally, it uses empirical evidence to argue that human beings resolve the semantic trilemma using general cognitive and motivational processes involving ‘mental time-travel,’ whereby we simulate different possible pasts and futures. I (...) demonstrate how mental time-travel psychology leads us to resolve the semantic trilemma through a six-step process of interpersonal negotiation and renegotiation, and then conclude by showing how comparative advantages in processing power would plausibly cause AI to use similar processes to solve the semantic trilemma more reliably than we do, leading AI to make better moral-semantic choices than humans do by our very own lights. (shrink)

BackgroundPublic health scholars have long called for preparedness to help better negotiate ethical issues that emerge during public health emergencies. In this paper we argue that the concept of ethical preparedness has much to offer other areas of health beyond pandemic emergencies, particularly in areas where rapid technological developments have the potential to transform aspects of health research and care, as well as the relationship between them. We do this by viewing the ethical decision-making process as a behaviour, and conceptualising (...) ethical preparedness as providing a health research/care setting that can facilitate the promotion of this behaviour. We draw on an implementation science and behaviour change model, COM-B, to demonstrate that to be ethically prepared requires having the capability, opportunity, and motivation to work in an ethically prepared way.MethodsWe use two case examples from our empirical research—one pandemic and one non-pandemic related—to illustrate how our conceptualisation of ethical preparedness can be applied in practice. The first case study was of the UK NHSX COVID-19 contact tracing application case study involved eight in-depth interviews with people involved with the development/governance of this application. The second case involved a complex case regarding familial communication discussed at the UK Genethics Forum. We used deductive qualitative analysis based on the COM-B model categories to analyse the transcripbed data from each case study.ResultsOur analysis highlighted that being ethically prepared needs to go beyond merely equipping health professionals with skills and knowledge, or providing research governance actors with ethical principles and/or frameworks. To allow or support these different actors to utilise their skills and knowledge, a focus on the physical and social opportunity is important, as is a better understanding the role of motivation.ConclusionsTo understand ethical preparedness, we need to view the process of ethical decision-making as a behaviour. We have provided insight into the specific factors that are needed to promote this behaviour—using examples from both in the pandemic context as well as in areas of health research and medicine where there have been rapid technological developments. This offers a useful starting point for further conceptual work around the notion of being ethically prepared. (shrink)

Rationality and the Genetic Challenge by Matti Häyry is a well-written and thoughtful book about important issues in the contemporary ethical discussion of genetics. The book is well structured around seven practical themes that the author takes to exemplify “the genetic challenge.” He also refers to them as “seven ways of making people better,” which the subtitle of the book already puts into question form: Making People Better? In the first chapter of the book, Häyry introduces these seven themes and (...) he discusses each of them in Chapters 3–9. In the remaining two chapters, 2 and 10, he describes the main normative positions analyzed in the book and clarifies his own methodology and position. He chooses six authors, or three pairs of authors, whom he takes to “represent the three normative doctrines of Western Moral philosophy” in order to demonstrate six “divergent rationalities” or “methods of genethics.” In this way, Häyry both summarizes the main prescriptive positions in contemporary bioethical debate and contrasts them with his own “nonconfrontational notion of rationality,” which aims to show that there is a variety of divergent, not mutually exclusive normative views, the justification of which “depends ultimately on the choice of worldviews, attitudes, and ideas about the foundation of moral worth”. (shrink)

Some suggest that gene editing human embryos to prevent genetic disorders will be in one respect morally preferable to using genetic selection for the same purpose: gene editing will benefit particular future persons, while genetic selection would merely replace them. We first construct the most plausible defence of this suggestion—the benefit argument—and defend it against a possible objection. We then advance another objection: the benefit argument succeeds only when restricted to cases in which the gene-edited child would have been brought (...) into existence even if gene editing had not been employed. Our argument relies on a standard account of comparative benefit which has recently been criticised on the grounds that it succumbs to the so-called ‘pre-emption problem’. We end by considering how our argument would be affected were the standard account revised in an attempt to evade this problem. We consider three revised accounts and argue that, on all three, our critique of the benefit argument stands. (shrink)

Much has been published about the ethical issues encountered by clinicians in genetics/genomics, but those experienced by clinical laboratory scientists are less well described. Clinical laboratory scientists now frequently face navigating ethical problems in their work, but how they should be best supported to do this is underexplored. This lack of attention is also reflected in the ethics tools available to clinical laboratory scientists such as guidance and deliberative ethics forums, developed primarily to manage issues arising within the clinic.We explore (...) what ethical issues are being experienced by clinical scientists, how they think such issues could be best analysed and managed, and whether their practice might be enhanced by more situated approaches to ethics deliberation and practice such as ethical preparedness. From thematic analysis of cases presented by clinical scientists at a specially convened meeting of the UK Genethics Forum, we derived three main ethical themes: (1) the redistribution of labour and responsibilities resulting from the practice of genomic medicine; (2) the interpretation and certainty of results and (3) the proposal that better standardisation and consistency of ethical approaches (for example, more guidelines and policy) could resolve some of the challenges arising.We argue that although standardisation is important for promoting shared understandings of good (including ethical) practice, supplementary approaches to enhance and sustain ethical preparedness will be important to help clinical scientists and others in the recently expanded genetic/genomic medicine environment foster quality ethical thinking. (shrink)

Bioethics should update its conception of the geneThe 25th of April marks the 50th anniversary of the publication in Nature of the letter by James Watson and Francis Crick announcing their solution to the structure of deoxyribose nucleic acid .1 By that time, much was known about the role of chromosomes in inheritance, the contribution of DNA to chromosome structure, and the chemistry of DNA.2 The gene concept itself was also well established by then; the principal scientific problem became to (...) specify what genes were in molecular terms and how they functioned in the cell during ordinary function and cell division.The importance of the solution of the structure of DNA was twofold. First, it gave insight into finding a mechanism for DNA replication, as the authors recognised in this famous sentence:"It has not escaped our notice that the specific pairing we have postulated immediately suggests a copying mechanism for the genetic material.3 … ". (shrink)

The introduction of contraceptive technologies hasresulted in the separation of sex and procreation. Theintroduction of new reproductive technologies (mainlyIVF and embryo transfer) has led not only to theseparation of procreation and sex, but also to there-definition of the terms mother and family.For the purpose of this essay, I will distinguishbetween:1. the genetic mother – the donor of the egg;2. the gestational mother – she who bears and gives birth to the baby;3. the social mother – the woman who raises the (...) child.This essay will deal only with the form of gestationalsurrogacy in which the genetic parents intend to bethe social parents, and the surrogate mother has nogenetic relationship to the child she bears anddelivers. I will raise questions regarding medicalethical aspects of surrogacy and the obligation(s) ofthe physician(s) to the parties involved. I will arguethat the gestational surrogate is a womb to rent,that there is great similarity between gestationalcommercial surrogacy and organ transplant marketing.Furthermore, despite claims to freedom of choice andfree marketing, I will claim that gestationalsurrogacy is a form of prostitution and slavery,exploitation of the poor and needy by those who arebetter off. The right to be a parent, although notconstitutional, is intuitive and deeply rooted.However, the issue remains whether this rightoverrules all other rights, and at what price to theparties involved. I will finally raise the followingprovocative question to society: In the interim periodbetween today''s limited technology and tomorrow''sextra-corporeal gestation technology (ectogenesis),should utilizing females in PVS (persistent vehetativestate) for gestational surrogacy be sociallyacceptable/permissible – provided they have leftpermission in writing? (shrink)

Good ethics start with good facts, as Tom Murray, past president of Hastings, often said when he was here, and that alone might be enough to declare that fields like genetic science and synthetic biology warrant their own subfields of ethics—“genethics” and “synthethics.” Perhaps getting clear on how genetic science might be used to improve human health requires such deep immersion in the genetic science that those studying the science's ethical implications are in effect in a subfield of ethics. (...) A further issue is whether the ethical questions about the scientific facts in a nascent field are new. (shrink)

This essay discusses the new report, Heritable Human Genome Editing, by the National Academy of Medicine, the National Academy of Sciences, and the Royal Society. After summarizing the report, we argue that the report takes four quite bold steps away from prior reports, namely (1) rejecting an omnibus approach to heritable human genome editing (HHGE) in favor of a case‐by‐case analysis of possible uses of HHGE, accepting that HHGE is acceptable in some cases; (2) recognizing that the interest in having (...) children who are genetically related to both would‐be rearing parents is one that the regulation of HHGE should honor; (3) patterning a regulatory model for HHGE on the United Kingdom's approach to regulating mitochondrial replacement techniques; and (4) conveying skepticism that international regulation is possible while showing a strong preference for a default into national regulatory regimes for HHGE. (shrink)

This essay discusses the new report, Heritable Human Genome Editing, by the National Academy of Medicine, the National Academy of Sciences, and the Royal Society. After summarizing the report, we argue that the report takes four quite bold steps away from prior reports, namely (1) rejecting an omnibus approach to heritable human genome editing (HHGE) in favor of a case‐by‐case analysis of possible uses of HHGE, accepting that HHGE is acceptable in some cases; (2) recognizing that the interest in having (...) children who are genetically related to both would‐be rearing parents is one that the regulation of HHGE should honor; (3) patterning a regulatory model for HHGE on the United Kingdom's approach to regulating mitochondrial replacement techniques; and (4) conveying skepticism that international regulation is possible while showing a strong preference for a default into national regulatory regimes for HHGE. (shrink)

ABSTRACT Fast forward 50 years into the future. A look back at what occurred in the field of bioethics since 2010 reveals that a conference in 2050 commemorated the death of bioethics. In a steady progression over the years, the field became increasingly fragmented and bureaucratized. Disagreement and dissension were rife, and this once flourishing, multidisciplinary field began to splinter in multiple ways. Prominent journals folded, one by one, and were replaced with specialized publications dealing with genethics, reproethics, nanoethics, (...) and necroethics. Mainstream bioethics organizations also collapsed, giving way to new associations along disciplinary and sub‐disciplinary lines. Physicians established their own journals, and specialty groups broke away from more general associations of medical ethics. Lawyers also split into three separate factions, and philosophers rejected all but the most rigorous, analytic articles into their newly established journal. Matters finally came to a head with global warming, the world‐wide spread of malaria and dengue, and the cost of medical treatments out of reach for almost everyone. The result was the need to develop plans for strict rationing of medical care. At the same time, recognition emerged of the importance of the right to health and the need for global justice in health. By 2060, a spark of hope was ignited, opening the door to the resuscitation of bioethics and involvement of the global community. (shrink)

This book uses insights from disability studies to understand in a deeper way the ethical implications that genetic technologies pose for Christian thought. Theologians have been debating genetic engineering for decades, but what has been missing from many theological debates is a deep concern for persons with genetic disabilities. In this ambitious and stimulating book, Devan Stahl argues that engagement with metaphysics and a theology of nature is crucial for Christians to evaluate both genetic science and the moral use of (...) genetic technologies, such as human genetic engineering, gene therapy, genetic screenings, preimplantation genetic diagnosis, and gene editing. Using theological notions of creation ex nihilo and natural law alongside insights from disability studies, the book seeks to recast the debate concerning genetic well-being. Following the work of Stanley Hauerwas, Stahl proposes the church as the locus for reimagining disability in a way that will significantly influence the debates concerning genetic therapies. Stahl's project in "genethics" proceeds with an acute awareness of her own liberal Protestant tradition's early embrace of the eugenics movement in the name of scientific and medical advancement, and it constructively engages the Catholic tradition's metaphysical approach to questions in bioethics to surpass limitations to Protestant thinking on natural law. Christianity has all too frequently been complicit in excluding, degrading, and marginalizing people with disabilities, but the new Christian metaphysics developed here by way of disability perspectives provides normative, theological guidance on the use of genetic technologies today. As Stahl shows in her study, only by heeding the voices of people with disabilities can Christians remain faithful to the call to find Christ in "the least of these" and from there draw close to God. This book will be of interest to scholars in Christian ethics, bioethics, moral theology, and practical theology. (shrink)