This paper argues that the medical conception of health as absence of disease is a value-free theoretical notion. Its main elements are biological function and statistical normality, in contrast to various other ideas prominent in the literature on health. Apart from universal environmental injuries, diseases are internal states that depress a functional ability below species-typical levels. Health as freedom from disease is then statistical normality of function, i.e., the ability to perform all typical physiological functions with at least typical efficiency. (...) This conception of health is as value-free as statements of biological function. The view that health is essentially value-laden, held by most writers on the topic, seems to have one of two sources: an assumption that health judgments must be practical judgments about the treatment of patients, or a commitment to "positive" health beyond the absence of disease. I suggest that the assumption is mistaken, the commitment possibly misdescribed. (shrink)

This book, written by four internationally renowned bioethicists and first published in 2000, was the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. The (...) book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science. (shrink)

With the advent of CRISPR gene-editing technology, designer babies have become a reality. Françoise Baylis insists that scientists alone cannot decide the terms of this new era in human evolution. Members of the public, with diverse interests and perspectives, must have a role in determining our future as a species.

Opponents of biomedical enhancement often claim that, even if such enhancement would benefit the enhanced, it would harm others. But this objection looks unpersuasive when the enhancement in question is a moral enhancement — an enhancement that will expectably leave the enhanced person with morally better motives than she had previously. In this article I (1) describe one type of psychological alteration that would plausibly qualify as a moral enhancement, (2) argue that we will, in the medium-term future, probably be (...) able to induce such alterations via biomedical intervention, and (3) defend future engagement in such moral enhancements against possible objections. My aim is to present this kind of moral enhancement as a counter-example to the view that biomedical enhancement is always morally impermissible. (shrink)

According to what we call the Principle of Procreative Beneficence, couples who decide to have a child have a significant moral reason to select the child who, given his or her genetic endowment, can be expected to enjoy the most well-being. In the first part of this paper, we introduce PB, explain its content, grounds, and implications, and defend it against various objections. In the second part, we argue that PB is superior to competing principles of procreative selection such as (...) that of procreative autonomy. In the third part of the paper, we consider the relation between PB and disability. We develop a revisionary account of disability, in which disability is a species of instrumental badness that is context- and person-relative. Although PB instructs us to aim to reduce disability in future children whenever possible, it does not privilege the normal. What matters is not whether future children meet certain biological or statistical norms, but what level of well-being they can be expected to have. (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.

Positions on the ethics of human enhancement technologies can be (crudely) characterized as ranging from transhumanism to bioconservatism. Transhumanists believe that human enhancement technologies should be made widely available, that individuals should have broad discretion over which of these technologies to apply to themselves, and that parents should normally have the right to choose enhancements for their children-to-be. Bioconservatives (whose ranks include such diverse writers as Leon Kass, Francis Fukuyama, George Annas, Wesley Smith, Jeremy Rifkin, and Bill McKibben) are generally (...) opposed to the use of technology to modify human nature. A central idea in bioconservativism is that human enhancement technologies will undermine our human dignity. To forestall a slide down the slippery slope towards an ultimately debased ‘posthuman’ state, bioconservatives often argue for broad bans on otherwise promising human enhancements. This paper distinguishes two common fears about the posthuman and argues for the importance of a concept of dignity that is inclusive enough to also apply to many possible posthuman beings. Recognizing the possibility of posthuman dignity undercuts an important objection against human enhancement and removes a distortive double standard from our field of moral vision. (shrink)

Phineas Gage’s story is typically offered as a paradigm example supporting the view that part of what matters for personal identity is a certain magnitude of similarity between earlier and later individuals. Yet, reconsidering a slight variant of Phineas Gage’s story indicates that it is not just magnitude of similarity, but also the direction of change that affects personal identity judgments; in some cases, changes for the worse are more seen as identity-severing than changes for the better of comparable magnitude. (...) Ironically, thinking carefully about Phineas Gage’s story tells against the thesis it is typically taken to support. (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)

Topic modeling—a text‐mining technique often used to uncover thematic structures in large collections of texts—has been increasingly frequently used in the context of the analysis of scholarly output. In this study, we construct a corpus of 19,488 texts published since 1971 in seven leading journals in the field of bioethics and philosophy of medicine, and we use a machine learning algorithm to identify almost 100 topics representing distinct themes of interest in the field. On the basis of intertopic correlations, we (...) group the content‐based topics into eight clusters, thus providing a novel, fine‐grained intellectual map of bioethics and philosophy of medicine. Moreover, we conduct a number of diachronic analyses, examining how the “prominence” of different topics has changed across time. In this way, we are able to observe the distinct patterns in which bioethics and philosophy of medicine have evolved and changed their focus over the past half a century. (shrink)

A number of philosophers working in applied ethics and bioethics are now earnestly debating the ethics of what they term “moral bioenhancement.” I argue that the society-wide program of biological manipulations required to achieve the purported goals of moral bioenhancement would necessarily implicate the state in a controversial moral perfectionism. Moreover, the prospect of being able to reliably identify some people as, by biological constitution, significantly and consistently more moral than others would seem to pose a profound challenge to egalitarian (...) social and political ideals. Even if moral bioenhancement should ultimately prove to be impossible, there is a chance that a bogus science of bioenhancement would lead to arbitrary inequalities in access to political power or facilitate the unjust rule of authoritarians; in the meantime, the debate about the ethics of moral bioenhancement risks reinvigorating dangerous ideas about the extent of natural inequality in the possession of the moral faculties. (shrink)

Continues the discussion of theoretical and practical perfection by examining the considerations that give some beliefs and intentions more quality and therefore value than others. It argues that Aristotelian considerations about rationality as essential to humans require measures of quality to be formal, considering only formal properties of beliefs and ends rather than their substantive content. There are two such measures: the extent of a belief's or end's content in space, time, and objects involved, and the degree to which different (...) beliefs and ends are organized in a hierarchical structure. Together, these measures value explanatorily organized knowledge, a unified life, and complex, difficult activities such as games. (shrink)

The question is answered by introducing an ideal, the ideal of well‐ordered science In well‐ordered science the inquiries pursued are those that would have been selected by a well‐informed group of deliberators dedicated to working cooperatively with one another. Well‐ordered science is contrasted with vulgar democracy and with elitism. The chapter suggests various ways in which our current practice of the sciences falls short of the ideal.

The treatment-enhancement distinction draws a line between services or interventions meant to prevent or cure conditions that we view as diseases or disabilities and interventions that improve a condition that we view as a normal function or feature of members of our species. The line drawn here is widely appealed to in medical practice and medical insurance contexts, as well as in our everyday thinking about the medical services we do and should assist people in obtaining.

Appeals to the idea of human nature are frequent in the voluminous literature on the ethics of enhancing human beings through biotechnology. Two chief concerns about the impact of enhancements on human nature have been voiced. The first is that enhancement may alter or destroy human nature. The second is that if enhancement alters or destroys human nature, this will undercut our ability to ascertain the good because, for us, the good is determined by our nature. The first concern assumes (...) that altering or destroying human nature is in itself a bad thing. The second concern assumes that human nature provides a standard without which we cannot make coherent, defensible judgments about what is good. I will argue (1) that there is nothing wrong, per se, with altering or destroying human nature, because, on a plausible understanding of what human nature is, it contains bad as well as good characteristics and there is no reason to believe that eliminating some of the bad would so imperil the good as to make the elimination of the bad impermissible, and (2) that altering or destroying human nature need not result in the loss of our ability to make judgments about the good, because we possess a conception of the good by which we can and do evaluate human nature. I will argue that appeals to human nature tend to obscure rather than illuminate the debate over the ethics of enhancement and can be eliminated in favor of more cogent considerations. (shrink)

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

The differences between critics and proponents of enhancement technologies are easily overblown. Both sides of this debate share the moral ideal of being “authentic” to oneself. They differ in how they prefer to understand authenticity, but even this difference is not as stark as it sometimes seems.

This article examines arguments concerning enhancement of human persons recently presented by Michael Sandel (2004). In the first section, I briefly describe some of his arguments. In section two, I consider whether, as Sandel claims, the desire for mastery motivates enhancement and whether such a desire could be grounds for its impermissibility. Section three considers how Sandel draws the distinction between treatment and enhancement, and the relation to nature that he thinks each expresses. The fourth section examines Sandel's views about (...) parent/child relations and also how enhancement would affect distributive justice and the duty to aid. In conclusion, I briefly offer an alternative suggestion as to why enhancement may be troubling and consider what we could safely enhance. (shrink)

In July 2018, the Nuffield Council of Bioethics released its long-awaited report on heritable genome editing. The Nuffield report was notable for finding that HGE could be morally permissible, even in cases of human enhancement. In this paper, we summarise the findings of the Nuffield Council report, critically examine the guiding principles they endorse and suggest ways in which the guiding principles could be strengthened. While we support the approach taken by the Nuffield Council, we argue that detailed consideration of (...) the moral implications of genome editing yields much stronger conclusions than they draw. Rather than being merely ‘morally permissible’, many instances of genome editing will be moral imperatives. (shrink)

The publication of the first study to use gene editing techniques in human embryos (Liang et al., 2015) has drawn outrage from many in the scientific community. The prestigious scientific journals Nature and Science have published commentaries which call for this research to be strongly discouraged or halted all together (Lanphier et al., 2015; Baltimore et al., 2015). We believe this should be questioned. There is a moral imperative to continue this research.

In Enhancing Evolution: The Ethical Case for Making Better People (2007), John Harris argues that a proper concern for the welfare of future human beings implies that we are morally obligated to pursue enhancements. Similarly, in “Procreative Beneficience: Why We Should Select The Best Children” (2001) and in a number of subsequent publications, Julian Savulescu has suggested that we are morally obligated to use genetic (and other) technologies to produce the best children possible. In this paper I argue that if (...) we do have such obligations then their implications are much more radical than either Harris or Savulescu admit. There is an uneasy tension in the work of these authors, between their consequentialism and their (apparent) libertarianism when it comes to the rights of individuals to use—or not use—enhancement technologies as they see fit. Only through a very particular and not especially plausible negotiation of the tension between their moral theory and their policy prescriptions can Harris and Savulescu obscure the fact that their philosophies have implications that most people would find profoundly unattractive. (shrink)

We find our way in the world partly by means of the discriminatory power of our emotions. The gut sense that something is repugnant or unsavory—the sort of feeling that many now have about various forms of biotechnology—sometimes turns out to be rooted in articulable and legitimate objections, which with time can be spelled out, weighed, and either endorsed or dismissed. But we ought not dismiss the emotional response at the outset as “mere feeling.”.

In the debate on the ethics of the non-medical use of pharmaceuticals for cognitive performance enhancement in healthy individuals there is a clear division between those who view “cognitive enhancement” as ethically unproblematic and those who see such practices as fraught with ethical problems. Yet another, more subtle issue, relates to the relevance and quality of the contribution of scholarly bioethics to this debate. More specifically, how have various forms of speculation, anticipatory ethics, and methods to predict scientific trends and (...) societal responses augmented or diminished this contribution? In this paper, we use the discussion of the ethics of cognitive enhancement to explore the positive and negative contribution of speculation in bioethics scholarship. First, we review and discuss how speculation has relied on different sets of assumptions regarding the non-medical use of stimulants, namely: terminology and framing; scientific aspects such as efficacy and safety; estimates of prevalence and consequent normalization; and the need for normative reflection and regulatory guidelines. Second, three methodological guideposts are proposed to alleviate some of the pitfalls of speculation: acknowledge assumptions more explicitly and identify the value attributed to assumptions; validate assumptions with interdisciplinary literature; and adopt a broad perspective to promote more comprehensive reflection. We conclude that, through the examination of the controversy about cognitive enhancement, we can employ these methodological guideposts to enhance the value of contributions from bioethics and minimize potential epistemic and practical pitfalls in this case and perhaps in other areas of bioethical debate. (shrink)

The argument of Julian Savulescu’s 2001 paper, “Procreative Beneficence: Why We Should Select the Best Children” is flawed in a number of respects. Savulescu confuses reasons with obligations and equivocates between the claim that parents have some reason to want the best for their children and the more radical claim that they are morally obligated to attempt to produce the best child possible. Savulescu offers a prima facie implausible account of parental obligation, as even the best parents typically fail to (...) do everything they think would be best for their children let alone everything that is in fact best for their children. The profound philosophical difficulties which beset the attempt to formulate a plausible account of the best human life constitute a further independent reason to resile from Savulescu’s conclusion. Savulescu’s argument also requires parents to become complicit with racist and homophobic oppression, which is yet another reason to reject it. Removing the equivocation from Savulescu’s argument allows us to see that the assertion of an obligation to choose the “best child” has much more in common with the “old” eugenics than Savulescu acknowledges. (shrink)

In discussions of the ethics of human gene therapy, it has become standard to draw a distinction between the use of human gene transfer techniques to treat health problems and their use to enhance or improve normal human traits. Some dispute the normative force of this distinction by arguing that it is undercut by the legitimate medical use of human gene transfer techniques to prevent disease - such as genetic engineering to bolster immune function, improve the efficiency of DNA repair, (...) or add cellular receptors to capture and process cholesterol. If disease prevention is a proper goal of medicine, these critics argue, and the use of gene transfer techniques to enhance human health maintenance capacities will help achieve that goal, then the “treatment/enhancement‘ distinction cannot define the limits of legitimate gene therapy. In this paper, I argue that a line can be drawn between prevention and enhancement for gene therapy (and thus between properly medical and nonmedical uses of gene therapy), but only if one is willing to accept two rather old-fashioned claims: 1) Some health problems are best understood as if they were entities in their own right, reifiable as processes or parts in a biological system, with at least as much ontological objectivity and theoretical significance as the functions that they inhibit. 2) Legitimate preventive genetic health care should be limited to efforts to defend people from attack by these more robust pathological entities, rather than changing their bodies to evade social injustices. (shrink)

Reproductive genetic technologies allow parents to decide whether their future children will have or lack certain genetic predispositions. A popular model that has been proposed for regulating access to RGTs is the ‘genetic supermarket’. In the genetic supermarket, parents are free to make decisions about which genes to select for their children with little state interference. One possible consequence of the genetic supermarket is that collective action problems will arise: if rational individuals use the genetic supermarket in isolation from one (...) another, this may have a negative effect on society as a whole, including future generations. In this article we argue that RGTs targeting height, innate immunity, and certain cognitive traits could lead to collective action problems. We then discuss whether this risk could in principle justify state intervention in the genetic supermarket. We argue that there is a plausible prima facie case for the view that such state intervention would be justified and respond to a number of arguments that might be adduced against that view. (shrink)

This chapter contains section titled: A Moral and Developmental Parity of Genes and Environment Manufacturing Humans Enhancement and Bad Parenting The Limited Powers of Genetic Engineers Are Enhancements Problematic because they are Positionally Valuable? Regulating the Pursuit of Positional Value.

ABSTRACT Uncertainty as to how we should articulate empirical data and normative reasoning seems to underlie most difficulties regarding the ‘empirical turn’ in bioethics. This article examines three different ways in which we could understand ‘empirical turn’. Using real facts in normative reasoning is trivial and would not represent a ‘turn’. Becoming an empirical discipline through a shift to the social and neurosciences would be a turn away from normative thinking, which we should not take. Conducting empirical research to inform (...) normative reasoning is the usual meaning given to the term ‘empirical turn’. In this sense, however, the turn is incomplete. Bioethics has imported methodological tools from empirical disciplines, but too often it has not imported the standards to which researchers in these disciplines are held. Integrating empirical and normative approaches also represents true added difficulties. Addressing these issues from the standpoint of debates on the fact‐value distinction can cloud very real methodological concerns by displacing the debate to a level of abstraction where they need not be apparent. Ideally, empirical research in bioethics should meet standards for empirical and normative validity similar to those used in the source disciplines for these methods, and articulate these aspects clearly and appropriately. More modestly, criteria to ensure that none of these standards are completely left aside would improve the quality of empirical bioethics research and partly clear the air of critiques addressing its theoretical justification, when its rigour in the particularly difficult context of interdisciplinarity is what should be at stake. (shrink)

The normative significance of the distinction between therapy and enhancement has come under sustained philosophical attack in recent discussions of the ethics of shaping future persons by means of preimplantation genetic diagnosis and other advanced genetic technologies. In this paper, I argue that giving up the idea that the answer to the question as to whether a condition is “normal” should play a crucial role in assessing the ethics of genetic interventions has unrecognized and strongly counterintuitive implications when it comes (...) to selecting what sort of children should be brought into the world. According to standard philosophical accounts of the factors one should take into account when making such .. (shrink)

Since it is now broadly acknowledged that ethics should receive early consideration in discourse on emerging technologies, ethical debates tend to flourish even while new fields of technology are still in their infancy. Such debates often liberally mix existing applications with technologies in the pipeline and far-reaching visions. This paper analyses the problems associated with this use of ethics as “preparatory” research, taking discourse on human enhancement in general and on pharmaceutical cognitive enhancement in particular as an example. The paper (...) will outline and discuss the gap between the scientific and technological state of the art and the ethical debates, pointing out epistemic problems in this context. Furthermore, it will discuss the future role of genuine ethical reflection in discourse on human enhancement, arguing also that such discourse needs to include a technology assessment—in the broad sense of the term—which encompasses, inter alia, anthropological perspectives and aspects of social theory. (shrink)

CRISPR germline editing therapies hold unprecedented potential to eradicate hereditary disorders. However, the prospect of altering the human germline has sparked a debate over the safety, efficacy, and morality of CGETs, triggering a funding moratorium by the NIH. There is an urgent need for practical paths for the evaluation of these capabilities. We propose a model regulatory framework for CGET research, clinical development, and distribution. Our model takes advantage of existing legal and regulatory institutions but adds elevated scrutiny at each (...) stage of CGET development to accommodate the unique technical and ethical challenges posed by germline editing. (shrink)

Beginning with the assumptions that genetic technology will make possible the enhancement of some significant human capacities and that our society will have self-evident reasons to pursue such enhancements, this essay suggests less evident reasons to proceed with extreme caution. The essay asks: Will we, in our attempts to enhance humans by reducing their subjection to chance and change, inadvertently impoverish them? It explores how technologies aimed at enhancement might affect the good that is our experience of some forms of (...) the beautiful and the excellent, the good that is relationships of care, and the good that is diversity across the life span. In the end, it speculates about the fundamental philosophical difference that underlies the disagreement between those who would tend to embrace a project to enhance human capacities and those who would tend to criticize such a project. (shrink)

Design of clinical trials for germline gene editing stretches current accepted standards for human subjects research. Among the challenges involved is a set of issues concerningintergenerational monitoring—long-term follow-up study of subjects and their descendants. Because changes made at the germline would be heritable, germline gene editing could have adverse effects on individuals’ health that can be passed on to future generations. Determining whether germline gene editing is safe and effective for clinical use thus may require intergenerational monitoring. The aim of (...) this paper is to identify and argue for the significance of a set of ethical issues raised by intergenerational monitoring in future clinical trials of germline gene editing. Though long-term, multigenerational follow-up study of this kind is not without precedent, intergenerational monitoring in this context raises unique ethical challenges, challenges that go beyond existing protocols and standards for human subjects research. These challenges will need to be addressed if clinical trials of germline gene editing are ever pursued. (shrink)

Julian Savulescu argues for two principles of reproductive ethics: reproductive autonomy and procreative beneficence, where the principle of procreative beneficence is conceptualised in terms of a duty to have the child, of the possible children that could be had, who will have the best opportunity of the best life. Were it to be accepted, this principle would have significant implications for the ethics of reproductive choice and, in particular, for the use of prenatal testing and other reproductive technologies for the (...) avoidance of disability, and for enhancement. In this paper, it is argued that this principle should be rejected, and it is concluded that while potential parents do have important obligations in relation to the foreseeable lives of their future children, these obligations are not best captured in terms of a duty to have the child with the best opportunity of the best life. (shrink)

Though the reputation of eugenics has been tarnished by history, eugenics per se is not necessarily a bad thing. Many advocate a liberal new eugenics—where individuals are free to choose whether or not to employ genetic technologies for reproductive purposes. Though genetic interventions aimed at the prevention of severe genetic disorders may be morally and socially acceptable, reproductive liberty in the context of enhancement may conflict with equality. Enhancement could also have adverse effects on utility. The enhancement debate requires a (...) shift in focus. What the equality and/or utility costs of enhancement will be is an empirical question. Rather than philosophical speculation, more social science research is needed to address it. Philosophers, meanwhile, should address head-on the question of how to strike a balance between liberty, equality, and utility in cases of conflict (in the context of genetics). (shrink)

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)

The therapy-enhancement distinction occupies a central place in contemporary discussions of human genetics and has been the subject of much debate. At a recent conference on gene therapy policy, scientists predicted that within a few years researchers will develop techniques that can be used to enhance human traits. In thinking about the morality of genetic interventions, many writers have defended somatic gene therapy, and some have defended germline gene therapy, but only a handful of writers defend genetic enhancement, or even (...) give it a fair hearing. The mere mention of genetic enhancement makes many people cringe and brings to mind the Nazi eugenics programs, Aldous Huxley's BraveNewWorld, or the recent movie Although many people believe that gene therapy has morally legitimate medical uses, others regard genetic enhancement as morally problematic or decidedly evil. (shrink)