RESUMOO presente artigo analisa processos de alterização na biologia humana e na biomedicina. A alterização é entendida aqui como o processo cultural de produção de alteridades por meio da delimitação, rotulação e categorização das formas possíveis de ser outro, desde um determinado marco de referência sócio-histórico. Ainda que a alterização faça parte de qualquer processo de delimitação de categorias de identidade no seio de uma cultura - e, nesse sentido, possa apresentar visões do outro tanto positivas quanto negativas -, aqui (...) nos interessamos especificamente na alterização como fator de marginalização e exclusão social de diferentes grupos humanos. São analisados diversos processos de alterização operantes nos discursos e nas práticas das ciências biomédicas ao longo de sua história recente, os quais têm conduzido à exclusão social de diferentes categorias de outros, ou a tratá-los como inferiores, em pretendidas bases científicas, ou em função de determinadas práticas institucionalizadas dentro da comunidade científica. Exemplos típicos de grupos marginalizados pelas ciências ocidentais ao longo de sua história incluem as raças não europeias, as mulheres, os homossexuais e os "pobres". O principal objetivo do presente artigo é analisar, na história recente das ciências biomédicas, esses processos de alterização que têm conduzido à marginalização de tais grupos e a considerá-los como inferiores. ABSTRACTThis article analyzes processes of "othering" in human biology and biomedicine. Othering is understood here as the cultural process of production of otherness by means of the delimitation, tagging, and categorization of the possible ways of being "other" within a given socio-historical context. Although othering can be considered as a constitutive aspect of any process of delimitation of identities within a given culture - and in this sense it can present both positive and negative views of the "other" -, in the present article we are specifically interested in processes of othering that lead to the marginalization and social exclusion of different human groups. We will analyze processes of othering, which have operated in the discourses and practices of biomedical sciences throughout their recent history, that have led to the social exclusion of different categories of "others", or to treating them as inferior, and that have supposedly scientific bases or as a consequence of the institutionalization of certain practices within the scientific community. Typical examples of these "others", marginalized by the Western sciences throughout their history, are the non-European "races", women, gay and lesbian people, and the "poor". The main objective of this article is to analyze, in the recent history of the biomedical technosciences, these different processes of othering that have led to the marginalization of such "others" and to treating them as inferior. (shrink)

Disagreement about the properattitude toward disability proliferates. Yetlittle attention has been paid to an importantmeta-question, namely, whether ``disability'' isan essentially contested concept. If so, recentdebates between bioethicists and the disabilitymovement leadership cannot be resolved. Inthis essay I identify some of the presumptionsthat make their encounters so contentious. Much more must happen, I argue, for anydiscussions about disability policy andpolitics to be productive. Progress depends onconstructing a neutral conception ofdisability, one that neither devaluesdisability nor implies that persons withdisabilities are inadequate. So, (...) first, I clearaway the conceptual underbrush that makes usthink our idea of disability must bevalue-laden. Second, I sketch someconstituents of, and constraints upon, aneutral notion of disability. (shrink)

(2001). A Neutral Ethical Framework for Understanding the Role of Disability in the Life Cycle. The American Journal of Bioethics: Vol. 1, No. 3, pp. 57-58.

In the last decade there has been a pragmatic turn in the work of those doing Christian ethics, especially as represented by the work of Jeffrey Stout and Franklin Gamwell. The pragmatic turn represents a critique of the highly influential work of Stanley Hauerwas and Alasdair MacIntyre, which argues for a strongly intra-church ethics. The pragmatists are correct in arguing that Christian ethics must engage the public sphere. However, I argue that they are deeply mistaken in their claim that this (...) engagement must rest on a weak or non-existent theology. I show that the claim that robust theology adds nothing to ethics, and that we can get along without it, is unsustainable. (shrink)

Until now, philosophical debate about human embryonic stem cell (hESC) research has largely been limited to its ethical dimensions and implications. Although the importance and urgency of these ethical debates should not be underestimated, the almost undivided attention that mainstream and feminist philosophers have paid to the ethical dimensions of hESC research suggests that the only philosophically interesting questions and concerns about it are by and large ethical in nature. My argument goes some distance to challenge the assumption that ethical (...) considerations alone must be foregrounded in philosophical discussions about hESC research by introducing a critical stance on the epistemological and ontological assumptions that underlie and condition it. A central aim of the paper is to show how Foucault's insights into knowledge-power, taken in combination with Hacking's claims about styles of reasoning, can make these assumptions evident, as well as cast light on their potentially deleterious implications for disabled people. Arguing in this way also enables me to draw out constitutive effects of research on stem cells, that is, to indicate how the discursive practices surrounding research on stem cells, as well as the technology itself, contribute to the constitution of impairment. (shrink)

The aim of this paper is to scrutinize a contemporary standoff in the American debate over the moral permissibility of human reproductive cloning in its prospective use as a eugenic enhancement technology. I shall argue that there is some significant and under-appreciated common ground between the defenders and opponents of human cloning. Champions of the moral and legal permissibility of cloning support the technology based on the right to procreative liberty provided it were to become as safe as in vitro (...) fertilization and that it be used only by adults who seek to rear their clone children. However, even champions of procreative liberty oppose the commodification of cloned embryos, and, by extension, the resulting commodification of the cloned children who would be produced via such embryos. I suggest that a Kantian moral argument against the use of cloning as an enhancement technology can be shown to be already implicitly accepted to some extent by champions of procreative liberty on the matter of commodification of cloned embryos. It is in this argument against commodification that the most vocal critics of cloning such as Leon Kass and defenders of cloning such as John Robertson can find greater common ground. Thus, I endeavor to advance the debate by revealing a greater degree of moral agreement on some fundamental premises than hitherto recognized. (shrink)

The rapid development of assisted reproduction technologies for the treatment of infertility appears to empower women through expanding their individual choice, but it is also creating new forms of suffering for them and their collaborators, especially in the context of transnational third-party reproduction. This paper explores the possibility of framing the ethical discourse around third-party reproduction by bringing attention to concerns of altruistic empathy for women who collaborate in the reproductive process, in addition to those of individualistic choice. This would (...) entail moving beyond an ethic of liberty that is based on self-interest and the language of rights, to an alternative ethic of care that is based on self-restraint and the language of responsibilities. An ethic of care and responsibility would cultivate the empathetic self-reflection of the autonomous actor in relation to those others who are part of the enterprise of bringing a child into the world. (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)

The practice of prenatal screening for disability is sometimes objected to because of the hurt and offence such practices may cause to people currently living with disabilities. This objection is commonly termed “the expressivist objection”. In response to the objection it is standardly claimed that disabilities are analogous to illnesses. And just as it would be implausible to suppose reduction of the incidence of illnesses such as flu sends a negative message to ill people, so it is not plausible to (...) suppose prevention of disability sends a negative message to disabled people. The expressivist objection hinges, however, upon a view of the relationship between disability and self identity which sees disability as part of the identity of the disabled person, in a way in which illnesses such as flu cannot be. This possibility is generally not considered in critiques of the expressivist objection. In this paper, an “identity claim” to the effect that disabilities can be identity constituting is accepted and the force of the expressivist argument is reconsidered in the light of its acceptance. It is concluded that even when such an identity claim is accepted, the expressivist objection is still not morally compelling. (shrink)

The hopes and fears expressed in the debate on human enhancement are not always based on a realistic assessment of the expected possibilities. Discussions about extreme scenarios may at times obscure the ethical and policy issues that are relevant today. This paper aims to contribute to an adequate and ethically sound societal response to actual current developments. After a brief outline of the ethical debate concerning neuro-enhancement, it describes the current state of the art in psychopharmacological science and current uses (...) of psychopharmacological enhancement, as well as the prospects for the near future. It then identifies ethical issues regarding psychopharmacological enhancements that require attention from policymakers, both on the professional and on the governmental level. These concern enhancement research, the gradual expansion of medical categories, off-label prescription and responsibility of doctors, and accessibility of enhancers on the Internet. It is concluded that further discussion on the advantages and drawbacks of enhancers on a collective social level is still needed. (shrink)

According to Norman Daniels, the moral significance of health needs stem from their impact on the normal opportunity range: pathological conditions involve comparative disadvantage. In this paper I defend an alternative reading of the moral importance of healthcare, which focuses on non-comparative aspects of disease. In the first section I distinguish two contrasting perspectives on pathological conditions, viz a comparative versus a non-comparative. By using this distinction I introduce a related disparity regarding the moral importance of personal responsibility for disease. (...) I claim that people are usually prepared to disregard individual responsibility for disease, if it involves non-comparative harm, but not if it entails mere disadvantage. Since disadvantage means to have less than equal opportunities, Daniels’ conception of opportunity is vital for his theory. It is therefore scrutinised more closely. I try to show that he wavers between two interpretations of the notion of opportunity, which are again linked to the distinction between a comparative and a non-comparative point of view. Finally, I criticise Daniels’ supposition that persons have an interest in the normal opportunity range. (shrink)

ZusammenfassungDie Zulässigkeit genetischer Untersuchungen an Arbeitnehmern wird in Deutschland neu diskutiert, nachdem einer hessischen Lehrerin die Verbeamtung auf Probe zunächst verweigert wurde, weil ihr Vater an der Huntington-Krankheit leidet. Es soll untersucht werden, ob eine gesetzliche Regelung genetischer Untersuchungen in der Arbeitsmedizin wünschenswert ist und welche ethischen Maßstäbe dabei zu berücksichtigen wären. Gendiagnostische Untersuchungsverfahren im engeren Sinn finden noch keine breite Anwendung in der Arbeits- und Betriebsmedizin. Die Nutzung genetischer Informationen gehört aber auch hier zum Standard. Damit sind verschiedene ethische (...) Konflikte verbunden, die insbesondere die Bereiche Autonomie und Diskriminierung betreffen. Gesetzliche Regelungen sollten sich daher nicht an der jeweiligen gendiagnostischen Technologie orientieren, sondern an der prognostisch-prädiktiven Qualität genetischen Wissens. Das Machtungleichgewicht am Arbeitsplatz und die immanenten Interessenkonflikte machen gesetzliche Regelungen erforderlich, die angesichts der zunehmenden Verfügbarkeit prädiktiver medizinischer Informationen Personenrechte schützen und einen fairen Interessenausgleich fördern. (shrink)

ZusammenfassungDie Zulässigkeit genetischer Untersuchungen an Arbeitnehmern wird in Deutschland neu diskutiert, nachdem einer hessischen Lehrerin die Verbeamtung auf Probe zunächst verweigert wurde, weil ihr Vater an der Huntington-Krankheit leidet. Es soll untersucht werden, ob eine gesetzliche Regelung genetischer Untersuchungen in der Arbeitsmedizin wünschenswert ist und welche ethischen Maßstäbe dabei zu berücksichtigen wären. Gendiagnostische Untersuchungsverfahren im engeren Sinn finden noch keine breite Anwendung in der Arbeits- und Betriebsmedizin. Die Nutzung genetischer Informationen gehört aber auch hier zum Standard. Damit sind verschiedene ethische (...) Konflikte verbunden, die insbesondere die Bereiche Autonomie und Diskriminierung betreffen. Gesetzliche Regelungen sollten sich daher nicht an der jeweiligen gendiagnostischen Technologie orientieren, sondern an der prognostisch-prädiktiven Qualität genetischen Wissens. Das Machtungleichgewicht am Arbeitsplatz und die immanenten Interessenkonflikte machen gesetzliche Regelungen erforderlich, die angesichts der zunehmenden Verfügbarkeit prädiktiver medizinischer Informationen Personenrechte schützen und einen fairen Interessenausgleich fördern. (shrink)

Accounts of the concepts of function and dysfunction have not adequately explained what factors determine the line between low‐normal function and dysfunction. I call the challenge of doing so the line‐drawing problem. Previous approaches emphasize facts involving the action of natural selection (Wakefield 1992a, 1999a, 1999b) or the statistical distribution of levels of functioning in the current population (Boorse 1977, 1997). I point out limitations of these two approaches and present a solution to the line‐drawing problem that builds on the (...) second one. (shrink)

Prenatal care and the practice of prenatal genetic testing are about to be changed fundamentally. Due to several ground-breaking technological developments prenatal screening and diagnosis (PND) will soon be offered earlier in gestation, with less procedure-related risks and for a profoundly enlarged variety of targets. In this paper it is argued that the existing normative framework for prenatal screening and diagnosis cannot answer adequately to these new developments. In concentrating on issues of informed consent and the reproductive autonomy of the (...) pregnant women the ethical debate misses problems related to the clinical pathway as a whole and to implicit normative attributions to clinical actions or the function of health care professionals. If, however, ethical debate would focus on the clinical context and on the ends of PND to a larger extent, it would be able to provide a more comprehensive analysis of the ethical challenges especially of the new technologies in order to be more adequately prepared for their implementation. (shrink)

A proper understanding of the moral and political significance of migration requires a focus on global inequalities. More specifically, it requires a focus on those global inequalities that affect people’s ability to participate in the production of economic goods and non-economic goods. We call cooperative infrastructures the complex material and immaterial technologies that allow human beings to cooperate in order to generate human goods. By enabling migrants to access high-quality cooperative infrastructures, migration contributes to the diffusion of technical and socio-political (...) innovations. In this way, it positively affects the ability of individuals from poorer countries to participate in the production of human goods, to benefit from such production, and to contribute to human development. Migration can also damage the material and immateri al components of the cooperative infrastructures accessible in both the host and sending countries; these potential downsides of migration should not be ignored, although arguably they can often be neutralized, alleviated, or compensated. (shrink)

The principle of fair equality of opportunity is regularly used to justify social policies, both in the philosophical literature and in public discourse. However, too often commentators fail to make explicit just what they take the principle to say. A principle of fair equality of opportunity does not say anything at all until certain variables are filled in. I want to draw attention to two variables, timing and currency. I argue that once we identify the few plausible ways we have (...) at our disposal for filling in those variables, it will become apparent that a reasonable version of the principle will be quite narrow. Its usefulness as a justificatory basis for social policies will be limited to those policies that target the distribution of competitive opportunities among people entering majority. (shrink)

Biomedical innovations are making possible the enhancement of human capabilities. There are two philosophical stances on the role that medicine should play in this respect. On the one hand, naturalism rejects every medical intervention that goes beyond preventing and treating disease. On the other hand, welfarism advocates enhancements that foster subjective well-being. We will show that both positions have considerable shortcomings. Consequently, we will introduce a third characterization in which therapies and enhancements can be reconciled with the legitimate objectives of (...) medicine inasmuch as they improve the capabilities that enable the freedom to pursue personal well-being. (shrink)

Pre-natal genetic enhancement affords us unprecedented capacity to shape our skills, talents, appearance and perhaps subsequently the quality of our lives in terms of overall happiness, success and wellbeing. Despite its powerful appeal, some have raised important and equally persuasive concerns against genetic enhancement. Sandel has argued that compassion and humility, themselves grounded in the unpredictability of talents and skills, would be lost. Habermas has argued that genetically altered individuals will see their lives as dictated by their parents’ design and (...) therefore will not acquire an appropriate self-understanding. How should we view enhancement efforts in light of these concerns? I propose that we begin by adopting a defeasibility stance. That is, I ask whether our belief that genetic enhancements serve in the best interests of the child is reason to genetically enhance, underscoring a sort of epistemic vulnerability. I utilize the epistemological notions of defeasible reasons, undercutting and overriding defeaters in order to better understand and systematically evaluate the force of such concerns. I argue that close examination of both objections using this framework shows that we have reason to enhance, a reason that is defeasible but as yet, undefeated. (shrink)

The ongoing revolution in molecular genetics has led many to speculate that one day we will be able to change the expression or phenotype of numerous complex traits to improve ourselves in many different ways. The prospect of genetic enhancements has generated heated controversy, with proponents advocating research and implementation, with caution advised for concerns about justice, and critics tending to see the prospect of genetic enhancements as an assault on human freedom and human nature. Both camps base their arguments (...) on the unquestioned assumption that the science will realize either their dreams or nightmares. In this paper, I show that their beliefs are based upon two fundamental mistakes. First, they are based upon an unwarranted reliance in a genetic determinism that takes for granted that the traits that we might most want to enhance, like intelligence, aggression, shyness, and even athletic ability, can be causally directed by specific genes. In so doing, character descriptions are reified to be concrete and discrete entities, in this case, genes. Second, they have accepted on faith that there is, or will be, a science to translate their hopes or worries into reality when, in fact, that is unlikely to occur because of the irreducible complexity of phenotypic expression. (shrink)

The potential for genetic engineering of enhancements to complex human traits has been the subject of vigorous debate for a number of years. Most of the discussion has centered on the possible moral consequences of pursuing enhancements, especially those that might affect complex behaviours and components of personality. Little has been written on the actual process of implementing this technology. This paper presents a ‘thought experiment’ about the likely form of final preclinical testing for a technology to enhance intelligence as (...) a prototypical multiplex trait. The significance and the potential dangers of implementing enhancements in humans, especially to highly valued traits such as intelligence, would mandate a thorough programme of testing in animals, including non-human primates such as chimpanzees. The implications this would have for researchers, society and, most importantly, the animals themselves are discussed, and the paper concludes with a suggestion for a morally justifiable approach to resolve the tragic question of what to do with research animals who have a cognitive capacity that is close to that of humans. (shrink)

In this article I consider some central aspects of the naturalist philosophy of science and science and technology studies in dealing with the contested status of technoscience in medicine. Focusing on the concepts of realism and representation, I argue that theories of science-as-practice in naturalist philosophy of science should expand their scope so as to reflect more thoroughly on the social and political context of technoscience. I develop a hermeneutic of technomedical objects in order to highlight the internal connectedness between (...) social action, material agency, and the actions of scientific communities. The framework thus developed is used to re-consider the genomic turn in medicine. Pointing to the discrepancies between socially dominant representations of genomic technology and the actual interventions brought about through those technologies, I raise the question of how and where to address problems of theory and policy. (shrink)

The ethics of human enhancement has been a hotly debated topic in the last 15 years. In this debate, some advocate examining science fiction stories to elucidate the ethical issues regarding the current phenomenon of human enhancement. Stories from science fiction seem well suited to analyze biomedical advances, providing some possible case studies. Of particular interest is the work of screenwriter Andrew Niccol (Gattaca, S1m0ne, In Time, and Good Kill), which often focuses on ethical questions raised by the use of (...) new technologies. Examining the movie In Time (2011), the aim of this paper is to show how science fiction can contribute to the ethical debate of human enhancement. In Time provides an interesting case study to explore what could be some of the consequences of radical life-extension technologies. In this paper, we will show how arguments regarding radical life-extension portrayed in this particular movie differ from what is found in the scientific literature. We will see how In Time gives flesh to arguments defending or rejecting radical life-extension. It articulates feelings of unease, alienation and boredom associated with this possibility. Finally, this article will conclude that science fiction movies in general, and In Time in particular, are a valuable resource for a broad and comprehensive debate about our coming future. (shrink)

Both, bioconservatives and bioliberals, should seek a discussion about ideas of human perfection, making explicit their underlying assumptions about what makes for a good human life. This is relevant, because these basic, and often implicit ideas, inform and influence judgements and choices about human enhancement interventions. Both neglect, and polemical but inconsistent use of the complex ideas of perfection are leading to confusion within the ethical debate about human enhancement interventions, that can be avoided by tackling the notion of perfection (...) directly. In the recent debates, bioconservatives have prominently argued against the ‘pursuit of perfection’ by biotechnological means. In the first part of this paper, we show that—paradoxically—bioconservatives themselves explicitly embrace specific conceptions of human perfection and perfectionist assumptions about the good human life in order to argue against the use of enhancement technologies. Yet, we argue that the bioconservative position contains an untenable ambiguity between criticising and endorsing ideas of human perfection. Hence, they stand in need of clarifying their stance on human perfection. In the second part of the paper, we ask whether bioliberals in fact (implicitly) advocate a particular conception of perfection, or whether they are right in holding that they do not, and that discussing perfection is obsolete anyway. We show that bioliberals also rely on a specific idea of human perfection, based on the idea of autonomy. Hence, their denial of the relevance of perfection in the debate is unconvincing and has to be revised. (shrink)

An interesting question, in both the moral and the legal context, is whether babies born of an infertility treatment-induced supernumerary pregnancy are properly considered to have been harmed. One might wonder how such a question could even arise in the face of data that clearly demonstrate that ITISP leaves an unduly large number of babies blind, deaf, and palsied, and facing lifelong disabilities. In fact, however, a number of arguments, based on the problem of collective form and two forms of (...) the so-called “nonidentity problem,” challenge the claim of harm in the ITISP context. The purpose of the present paper is to establish, as against these arguments, that harm has been imposed on the ITISP-damaged offspring. (shrink)

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

In the present paper, we focus on the role that the concept of geneticization has played in the discussion about health care, bioethics and society. The concept is discussed and examples from the evolving discourse about geneticization are critically analyzed. The relationship between geneticization, medicalization and biomedicalization is described, emphasizing how debates about the latter concepts can inspire future research on geneticization. It is shown how recurrent themes from the media coverage of genetics portray typical traits of geneticization and thus (...) contribute to the process. We look at examples of small-scale studies from the literature where geneticization of medical practice has been demonstrated. Methodological disputes about the relevance of empirical evidence for the geneticization thesis and the normative status of the concept are discussed. We consider arguments to the effect that ideas from mainstream bioethics have facilitated geneticization by emphasizing individualistic notions of autonomy and responsibility while ignoring the role of genetics in the wider social context. It is shown how a concept like geneticization, which can be used to draw the attention of philosophers, social scientists and others to challenges that tend to be neglected by mainstream bioethics, also has the potential to move people’s attention away from other pertinent issues. This may happen if researchers become preoccupied with the transformative effects of genetics, and we argue that a wider reading of geneticization should inspire critical analysis of the sociocultural preconditions under which genetics is currently evolving. (shrink)

Die breite Einführung nicht-invasiver pränataler Tests sowie die Ausweitung der Testziele über Trisomien hinaus machen es notwendig, Sinn und Ziel der pränatalen Diagnostik als emergente soziale Praxis grundsätzlich zu diskutieren. Wenn, wie angenommen wird, PND nicht zu eugenischen Zwecken, sondern zur Stärkung der Autonomie dienen soll, muss gefragt werden, welche Bedeutung die Entscheidungen haben, ein bestimmtes zukünftiges Kind zu gebären. Stephen Wilkinson hat vorgeschlagen, PND als eine Form „selektiver Reproduktion“ zu verstehen. In diesem Paper wird geprüft, ob die Charakterisierung der (...) Entscheidung nach PND als „Selektion“ zutrifft und welche moralischen Vorannahmen ihr zugrunde liegen.Es zeigt sich, dass das Konzept der „selektiven Reproduktion“ die Handlungen der PND inakkurat repräsentiert. Es beinhaltet zudem sowohl eine Abstrahierung als auch eine Distanzierung. Es nimmt an, dass Frauen und Paare entweder falls nötig mehrere Schwangerschaften planen, um ein gesundes Kind zu erzeugen, oder sich als Ausführende einer selektiven Strategie auf der Populationsebene verstehen. Die Einschränkung der ethischen Diskussion auf das Problem der Selektion verdeckt zwei wichtige Problemfelder, die die konflikthaltige Situation der PND aus der Perspektive der Frau oder des Paares charakterisieren: die Schwangerschaft als persönliche Beziehung und den Akt des Abbruchs der Schwangerschaft. Aufgrund seiner impliziten Normativität wird „selektive Fortpflanzung“ als sinnvolle Bezeichnung für die Praxis der PND zurückgewiesen. (shrink)

This paper applies aspects of Hugo Grotius's theologically informed theory of property to contemporary issues concerning access to the human DNA sequence and patenting practices. It argues that Christians who contribute to public debate in these areas might beneficially employ some of the concepts with which he worked--notably "common right," the "right of necessity," and "use right." In the seventeenth century, wars were fought over trading rights and access to the sea. In the twenty-first century, information and intellectual property are (...) the issues of the day. Grotius's writings serve to correct the overemphasis in modern liberalism on individual rights, and have practical application to the debate concerning the reduction of the human genome to the status of private property. (shrink)

Volume 19, Issue 7, July 2019, Page 45-47.

Comparisons between germline gene editing using CRISPR technology and a renewal of eugenics are evident in the current bioethical discussions. This article examines the different roles of such references to the past. In the first part, the alleged parallels between gene editing of the germline and eugenics are addressed from three perspectives: First, the historical adequacy of such comparisons is questioned. Second, it is asked whether the evils of the past can in fact be attributed to (future) practices of germline (...) gene editing. Third, it is discussed whether the alleged hazards of eugenics should in fact universally be condemned from a moral perspective. The article attempts to show that references to the eugenic past to rebut gene editing are highly selective and should be abandoned to allow for a more transparent ethical discourse. While the comparison with a eugenic past is frequently drawn by opponents of germline gene editing, the remaining part of this article investigates historic references from the proponents of germline gene editing. It is argued that they also employ different narratives of the past to justify their own liberal position. While such references are equally problematic, some lessons from the history of eugenics will be spelled out that can inform future debates on germline gene editing. (shrink)

Three of the articles included in this issue of the Journal of Medicine and Philosophy - Ron Amundson and Shari Tresky's "On a Bioethical Challenge to Disability Rights"; Rachel Cooper's "Can It Be a Good Thing to Be Deaf?"; and Mark T. Brown's "The Potential of the Human Embryo" - interact (in various ways) with the concepts of disability, humanity, and personhood and their normative dimensions. As one peruses these articles, it becomes apparent that terms like "disability," "human being," and (...) "person" carry with them great normative significance. There is, however, much disagreement concerning both the definition and the extension of such terms. This is significant because different terms and definitions are associated with different sets of normative requirements. In what follows we reconstruct the argument of each of the articles, and then offer some brief critical analysis intended to stimulate further thought about and discussion of the issues that each raises. (shrink)

Can it be better or worse for a person to exist than not to exist at all? This old and challenging existential question has been raised anew in contemporary moral philosophy, mainly for two reasons. First, traditional “impersonal” ethical theories, such as utilitarianism, have counterintuitive implications in population ethics, for example, the repugnant conclusion. Second, it has seemed evident to many that an outcome can be better than another only if it is better for someone, and that only moral theories (...) that are in this sense “person affecting” can be correct. The implications of this Person-Affecting Restriction will differ radically, however, depending on which answer one gives to the existential question. The negative answer, which we argue against, would make the restriction quite untenable. Hence, many of the problems regarding our moral duties to future generations turn around the issue at hand. (shrink)

There are many ways that biological theory can inform ethical discussions of genetic engineering and biomedical enhancement. In this essay, we highlight some of these potential contributions, and along the way provide a synthetic overview of the papers that comprise this special issue. We begin by comparing and contrasting genetic engineering with programs of selective breeding that led to the domestication of plants and animals, and we consider how genetic engineering differs from other contemporary biotechnologies such as embryo selection. We (...) go on to consider the implications of genetic engineering for human nature, human evolution, and persistence of the human species. Finally, we question whether genetic interventions warrant the extraordinary ethical scrutiny they are often given, and we show how the misleading “genetic blueprint” metaphor has imposed a faulty structure on the enhancement debate. We conclude by considering the nature of biological development and the sobering limits it places on what genetic engineering can reasonably hope to achieve. (shrink)

Julian Savulescu has given clear expression to a principle—that of “procreative beneficence”—which underlies the thought of many contemporary writers on bioethics. The principle of procreative beneficence holds that parents or single reproducers are at least prima facie obliged to select the child, out of a range of possible children they might have, who will be likely to lead the best life. My aim in this paper is to argue that prospective parents, just by dint of their being prospective parents, are (...) in fact not obliged to act on PPB. That is, there is something about their filling the role of prospective parents that exempts them from selecting the child with the best life. I urge that it is more realistic to view prospective parents as bound by a principle of acceptable outlook, which holds that they ought not to select children whose lives will contain an unacceptable amount of suffering. (shrink)

One of the central theses of egalitarian liberals in the domain of distributive justice is that talented individuals should not be allowed to keep their entire market-income even if it flows solely from their greater abilities. This claim is usually supported by one of several arguments or some mixture of them, but in the present paper, I want to concentrate on the version that invokes equality of opportunity as its starting point. Namely, it is claimed that every human being should (...) enjoy an equal starting point in the life-race but that this is not secured insofar as some have greater natural talents than others. Therefore, egalitarians hold that results that arise from such an unfair situation are unjust and should be corrected by a redistributive taxation. I want to criticize this argument by hoping to show that it presupposes an untenable view about identity of persons. (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)

Das Ideal einer vorhersagenden Medizin in Kombination mit wirkungsvollen, kausalen Strategien der Prävention auf molekularer Ebene ist noch immer weit davon entfernt, klinische Realität zu werden. Es ist jedoch schon heute festzustellen, dass zwischen Medizin und Gesellschaft verhandelte Konzepte von Gesundheit in immer stärkerem Maße auf zukünftige Gesundheit ausgerichtet sind, mithin einen immer präventiveren Charakter aufweisen. Der vorliegende Beitrag untersucht die Frage, ob neue Konzepte einer prädiktiv-präventiven Medizin – insbesondere Public Health Genetics bzw. Public Health Genomics – das Kriterium der (...) Verbesserung der sozialen Erreichbarkeit von Gesundheit erfüllen. Diese Analyse wird vor dem Hintergrund der Rolle sozialer Grundwerte, insbesondere dem der Gerechtigkeit, für Funktionen der Medizin in unserer Gesellschaft einerseits sowie der Bedeutung des Wandels der medizinischen Schlüsselkonzepte „Gesundheit“ und „Krankheit“ andererseits vorgenommen. (shrink)

Das Ideal einer vorhersagenden Medizin in Kombination mit wirkungsvollen, kausalen Strategien der Prävention auf molekularer Ebene ist noch immer weit davon entfernt, klinische Realität zu werden. Es ist jedoch schon heute festzustellen, dass zwischen Medizin und Gesellschaft verhandelte Konzepte von Gesundheit in immer stärkerem Maße auf zukünftige Gesundheit ausgerichtet sind, mithin einen immer präventiveren Charakter aufweisen. Der vorliegende Beitrag untersucht die Frage, ob neue Konzepte einer prädiktiv-präventiven Medizin – insbesondere Public Health Genetics bzw. Public Health Genomics – das Kriterium der (...) Verbesserung der sozialen Erreichbarkeit von Gesundheit erfüllen. Diese Analyse wird vor dem Hintergrund der Rolle sozialer Grundwerte, insbesondere dem der Gerechtigkeit, für Funktionen der Medizin in unserer Gesellschaft einerseits sowie der Bedeutung des Wandels der medizinischen Schlüsselkonzepte „Gesundheit“ und „Krankheit“ andererseits vorgenommen. (shrink)

The possibility of genetic enhancement to increase the likelihood of success in sport and life’s prospects raises questions for accounts of sport and theories of justice. These questions obviously include the fairness of such enhancement and its relationship to the goals of sport and demands of justice. Of equal interest, however, is the effect on our understanding of individual effort, merit, and desert of either discovering genetic contributions to components of such effort or recognizing the influence of social factors on (...) the development and exercise of individual effort. This paper analyzes arguments about genetic enhancement with the goal of raising questions about how sport and justice regard unchosen, undeserved inequalities and what is assumed to be their opposite—namely, the exercise and results of individual effort. It is suggested that contemplating enhancement of natural assets previously outside human control may reinforce recognition of responsibility to intervene with regard to social advantages so as to support individual effort and improve individuals’ life prospects. (shrink)

(2001). How Long Has This Been Going On? Disability Issues, Disability Studies, and Bioethics. The American Journal of Bioethics: Vol. 1, No. 3, pp. 54-55.

New life sciences innovation offers the possibility of new conceptions of human nature with significant impact on liberal theories of justice. So far, nature as such has been thought to be something given and beyond human control. Thus, to define something as natural has meant the same thing as to relegate it to the realm of fortune or misfortune, rather than justice or injustice. However, the successful decoding of the human genome and subsequent advances in genomics-based technologies begins to change (...) this conception to a new one: nature can be something dynamic and within human control. Therefore, genomics-based technologies can make possible the just distribution of natural goods (rationality, intelligence, etc). Can liberal political theories successfully deal with this new possibility of justice? This paper addresses the question by briefly assessing Rawls' egalitarianism, Nozick's libertarianism and Sen's capability theory of justice. It is argued that these theories fail to address the new possibility of justice made feasible by life sciences innovation. On the one hand, libertarianism is insensitive to natural inequalities. On the other hand, egalitarianism and the capability theory of justice are limited to compensating for natural inequalities and avoid ensuring just distribution of natural goods. Contemporary liberal theories are not dynamic enough to deal with distributive justice in the 21st century. (shrink)

The successful decoding of human genome and subsequent advances in new life sciences innovation create technological presuppositions of a new possibility of justice i.e. the just distribution of both social and natural goods. Although Rawlsians attempt to expand their theory to include this new possibility, they fail to provide plausible metrics of social justice in the genomics and post-genomics era. By contrast, Senians seem to succeed to do so through their index of basic capabilities. This paper explores what might be (...) regarded as a Senian perspective of distributive justice in new life sciences innovation. The argument is that, by comparing freedoms instead of primary goods, the capability theory allows not only for the identification of injustices linked to natural lottery but also for their elimination through the use of new genomic technologies, including gene-based diagnostics, gene therapy, somatic cell engineering and germ-line engineering. These innovative technologies seem to have the potential to reduce variability in natural goods and therefore enable individuals to convert social goods into well-being or welfare. (shrink)

Since the establishment of the Human Genome Project and the identification of genes in human DNA that play a role in human diseases and disorders, a long, moral and political, battle has began over the extension of IPRs to information contained in human genetic material. According to the Nuffield Council on Bioethics, over the past 20 years, large numbers of human genes have been the subject of thousands of patent applications. This paper examines whether human gene patents can be justified (...) in terms of liberal theories of morality such as natural law, personality development, just reward and social utility. It is argued that human gene patents are in conflict with fundamental principles of liberal morality and justice because they result in "genetic information feudalism". (shrink)

In his paper The Opposite of Human Enhancement: Nanotechnology and the Blind Chicken problem (Nanoethics 2:305–316, 2008) Paul Thompson argues that the possibility of disenhancing animals in order to improve animal welfare poses a philosophical conundrum. Although many people intuitively think such disenhancement would be morally impermissible, it’s difficult to find good arguments to support such intuitions. In this brief response to Thompson, I accept that there’s a conundrum here. But I argue that if we seriously consider whether creating beings (...) can harm or benefit them, and introduce the non-identity problem to discussions of animal disehancement, the conundrum is even deeper than Thompson suggests. (shrink)