Why potential parents should select the best child of possible children, and the necessity of a dialogue about the context of a reproductive decision.The principle of Procreative Beneficence is the principle of selecting the best child of the possible children one could have. This principle is elaborated on and defended against a range of objections. In particular, focus is laid on four objections that Michael Parker raises: that it is underdetermining, that it is insensitive to the complex nature of the (...) good, that it is self-defeating and that it is overly individualistic. Procreative Beneficence is a useful principle in reproductive decision-making. It is necessary to be more active in making selection decisions about what kind of child to have.Parker1 raises four objections to the principle of Procreative Beneficence . I will address these in turn. Procreative Beneficence is underdeterminingParker claims that Procreative Beneficence is underdetermining. By “underdetermining”, he means that the principle will not give clear and determinate answers as to which lives are better or best. Parker argues that “ranking possible lives as “better” or “worse” is “highly problematic”.Ranking lives is a very complex matter. Let us distinguish between: the value of a whole life and the value of an individual feature of a life .We should also distinguish between valuation ex ante and ex post . In Procreative Beneficence, I likened genetic testing to playing the wheel of fortune.2 Just because we have a weak chance of winning, does not mean we should not play the game. The only reason not to play a game that …. (shrink)

As the rapidly advancing possibilities of biotechnology have outstripped the adaptive capacity of current legal and ethical institutions, a vigorous debate has arisen that considers the boundaries of appropriate use of this technology, particularly when applied to humans. This article examines ethical concerns surrounding the development of markets in a particular form of human genetic engineering in which heterozygotes are fitter than both homozygotes, a condition known as heterozygous advantage. To begin, we present a generalized model of the condition, illuminated (...) by the application to sickle-cell anemia. Next, we propose a typology of related markets, some of which are currently functioning with available products and services, and others that are widely viewed as imminent. We suggest the manner in which perverse incentives may arise for firms that market genetic intervention in circumstances where heterozygous advantage is possible. Finally, we propose that this misalignment of incentives with social welfare has arisen from both ill-conceived market intervention where markets are capable of achieving efficient outcomes and the lack of market intervention where markets have failed. We offer specific legal and regulatory approaches for reform. (shrink)

As the rapidly advancing possibilities of biotechnology have outstripped the adaptive capacity of current legal and ethical institutions, a vigorous debate has arisen that considers the boundaries of appropriate use of this technology, particularly when applied to humans. This article examines ethical concerns surrounding the development of markets in a particular form of human genetic engineering in which heterozygotes are fitter than both homozygotes, a condition known as heterozygous advantage. To begin, we present a generalized model of the condition, illuminated (...) by the application to sickle-cell anemia. Next, we propose a typology of related markets, some of which are currently functioning with available products and services, and others that are widely viewed as imminent. We suggest the manner in which perverse incentives may arise for firms that market genetic intervention in circumstances where heterozygous advantage is possible. Finally, we propose that this misalignment of incentives with social welfare has arisen from both ill-conceived market intervention where markets are capable of achieving efficient outcomes and the lack of market intervention where markets have failed. We offer specific legal and regulatory approaches for reform. (shrink)

My critics in this symposium illustrate one principle and three fallacies of disability studies. The principle, which we all share, is that all persons are equal and none are less equal than others. No disability, however slight, nor however severe, implies lesser moral, political or ethical status, worth or value. This is a version of the principle of equality. The three fallacies exhibited by some or all of my critics are the following: Choosing to repair damage or dysfunction or to (...) enhance function, implies either that the previous state is intolerable or that the person in that state is of lesser value or indicates that the individual in that state has a life that is not worthwhile or not thoroughly worth living. None of these implications hold. Exercising choice in reproduction with the aim of producing children who will be either less damaged or diseased, or more healthy, or who will have enhanced capacities, violates the principle or equality. It does not. Disability or impairment must be defined relative either to normalcy, “normal species functioning”, or “species typical functioning”. It is not necessarily so defined. (shrink)

This paper argues that we can see our lives as a snapshot happening now or as a moving picture extending across time. These dual ways of seeing our lives inform how we conceive of the problem of age group justice. A snapshot view sees age group justice as an interpersonal problem between distinct age groups. A moving picture view sees age group justice as a first-person problem of prudential choice. This paper explores these different ways of thinking about age group (...) justice and illustrates them using a principle of respect for human dignity, understood in terms of reasonable support for floor level central human capabilities at each stage of life. I argue that different frames are suitable for different kinds of decisions, and each provides a true, but partial, picture of aging and age group justice. (shrink)

It is argued here that bioethicists might inadvertently be promoting genetic determinism: the idea that genes alone determine human traits and behaviours. Discussions about genetic testing are used to exemplify how they might be doing so. Quite often bioethicists use clinical cases to support particular moral obligations or rights as if these cases were representative of the kind of information we can acquire about human diseases through genetic testing, when they are not. On other occasions, the clinical cases are presented (...) in simplistic ways that portray genetic testing as yielding information more accurate than it actually is. It is concluded that, because of the problematic implications that the ideology of genetic determinism might have for individuals’ wellbeing and for our public policies, bioethicists should be careful to present these issues in ways that do not promote questionable ideas about the causal role of genes in human diseases and behaviours. (shrink)

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which (...) focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

Many hold that distributing healthcare according to medical need is a requirement of equality. Most egalitarians believe, however, that people ought to be equal on the whole, by some overall measure of well-being or life-prospects; it would be a massive coincidence if distributing healthcare according to medical need turned out to be an effective way of promoting equality overall. I argue that distributing healthcare according to medical need is important for reducing individuals' uncertainty surrounding their future medical needs. In other (...) words, distributing healthcare according to medical need is a natural feature of healthcare insurance; it is about indemnity, not equality. (shrink)

Bakgrunn: Preimplantasjonsgenetisk diagnostikk er en genetisk undersøkelse av befruktede egg før de settes inn i livmoren i forbindelse med assistert reproduksjon. Hensikten med PGD er å unngå at det fremtidige barnet får en alvorlig arvelig sykdom, og at par som på grunn av arvelig sykdom har vansker med å få barn, kan få avkom. PGD er kontroversielt og et sentralt tema for den pågående vurderingen og revisjonen av bioteknologiloven.Metode: Paradoksteori anvendes for å identifisere og analysere noen av kontroversene ved PGD. (...) Det skilles mellom tilsynelatende paradokser, antinomier og aporier. Materialet er offentlige dokumenter, debattinnlegg og faglitteratur.Resultater: Det finnes en rekke tilsynelatende paradokser på PGD-ens område, slik som at PGD gjøres selv om det er svært liten sannsynlighet for at det blir født et alvorlig sykt barn, og at det gjøres PGD for mindre alvorlige sykdommer når forutsetningen for PGD er alvorlig arvelig sykdom. Samtidig finnes det også antinomier: At PGD gir rett til helsehjelp uten at det eksisterer noen pasient, og at PGD gjennomføres selv ved høye kostnader og lav suksessrate. Om embryoet og fosteret har moralsk status og rett på beskyttelse, synes å utgjøre en apori.Konklusjon: Å formulere moralske utfordringer som paradokser kan være en fruktbar måte å tydeliggjøre utfordringer og motsetninger på. Dessuten kan det styre innsatsen: Vi bør bestrebe oss på å rydde opp i tilsynelatende paradokser, jobbe hardere med grunnlagsutfordringene ved antinomier og til en viss grad akseptere motsetningene ved aporiene.Nøkkelord: Preimplantasjonsgenetisk diagnostikk, paradoks, antinomi, aporiEnglish summary: PGD's ParadoxesBackground: Pre-implantation genetic diagnosis is a genetic test of embryos before implantation as part of in vitro fertilization. The purpose of using PGD is to help people avoid having children with serious genetic disease and to help those with genetically based infertility to have children. PGD has been controversial and is assessed as part of the revision of the Norwegian biotechnology act.Method: Paradox theory is used to identify and analyse controversies with PGD. It distinguishes between resolvable paradoxes, antinomies and aporias. The material comprises official documents, public debates, and professional publications.Results: Many resolvable paradoxes are identified with PGD, such as that PGD is done even in cases where there is very little chance that a seriously ill child will be born and in case of diseases that are not considered to be «serious inheritable disease,» as required by the law. At the same time, there are antinomies: PGD is subsumed within a patient's rights even if there is no patient, and PGD is done even when the success rate is low and the expenses are high. Whether the embryo and the foetus have a right to protection appears to be an aporia.Conclusion: Analysing moral problems in terms of paradoxes may be a fruitful way of displaying challenges and conflicts. Moreover, it may give focus and direction to our endeavours. That is, we should try to resolve the resolvable paradoxes and work harder with the conflicts of the antinomies, and, to a certain extent, to accept the antagonisms of the aporias. (shrink)

Die Frage nach der Gerechtigkeit im Gesundheitswesen wird aus der Perspektive einer allgemeinen Theorie der Gerechtigkeit betrachtet. Diese Theorie ist ein Befähigungsansatz, der zwischen 1) der Grundversorgung aller Bürger mit Grundbefähigungen, 2) einem gerechten Anteil an den Früchten gesellschaftlicher Kooperation und 3) individuell erstrebten Gütern und Leistungen differenziert. Die Anwendung dieser Theorie reagiert auf charakteristische Probleme der Allokation im Gesundheitssektor: den prinzipiell ungedeckten Bedarf, die mangelnde Zurechenbarkeit des Bedarfes und die asymmetrische Informationsstruktur zwischen Patienten und Leistungserbringern.

ZusammenfassungDie Frage nach der Gerechtigkeit im Gesundheitswesen wird aus der Perspektive einer allgemeinen Theorie der Gerechtigkeit betrachtet. Diese Theorie ist ein Befähigungsansatz, der zwischen 1) der Grundversorgung aller Bürger mit Grundbefähigungen, 2) einem gerechten Anteil an den Früchten gesellschaftlicher Kooperation und 3) individuell erstrebten Gütern und Leistungen differenziert. Die Anwendung dieser Theorie reagiert auf charakteristische Probleme der Allokation im Gesundheitssektor: den prinzipiell ungedeckten Bedarf, die mangelnde Zurechenbarkeit des Bedarfes und die asymmetrische Informationsstruktur zwischen Patienten und Leistungserbringern.

Is nanotechnology-based human enhancement morally permissible? One reason to question such enhancement stems from a concern for preserving our species. It is harder than one might think, however, to explain what could be wrong with altering our own species. One possibility is to turn to the environmental ethics literature. Perhaps some of the arguments for preserving other species can be applied against nanotechnology-based human enhancements that alter human nature. This paper critically examines the case for using two of the strongest (...) arguments in the environmental ethics literature to show that nanotechnology-based human enhancements are impermissible: 1) Our species, like many other naturally occurring species, has aesthetic value. So, nanotechnology-based human enhancements that alter our species should be prohibited. 2) Our species plays valuable ecological roles. Nanotechnology-based human enhancements that alter our species are likely to interfere with our species playing our ecologically valuable roles. So, such enhancements should be prohibited. Neither argument, ultimately, proves conclusive. The paper concludes, however, that considerations underlying both arguments may show us that some nanotechnology-based human enhancements are impermissible. (shrink)

In the traditions of narrative ethics and casuistry, stories have a well-established role. Specifically, illness narratives provide insight into patients’ perspectives and histories. However, because they tend to see fiction as an aesthetic endeavour, practitioners in these traditions often do not realize that fictional stories are valuable moral sources of their own. In this paper I employ two arguments to show the mutual relationship between bioethics and fiction, specifically, science fiction. First, both discourses use imagination to set a scene and (...) determine a perspective. Second, bioethics and science fiction share the family resemblance of expressing moral beliefs. I then consider how understanding bioethics and science fiction as interrelated discourses can be the basis of a methodology for inquiry into relational autonomy in the context of biotechnologies and medicine. As an example of this methodology, I analyse Fay Weldon’s novel The Cloning of Joanna May. (shrink)

This essay explores the two main objectives of Bishop’s book, which he analyzes in the context of the care for the dying: the medical metaphysics underlying medical science and biopolitics as governance of the human body. This essay discusses Bishop’s claims in view of newer developments in medicine, especially the turn to the construction of life, and confronts the concept of the patient’s sovereignty with an alternative model of vulnerable agency. In order to overcome the impasses of contemporary bioethics, the (...) essay argues that practical reason requires a two-fold ethics: first, it must develop a new hermeneutics of illness and disease, and second, in order to protect the individuals in the process of dying, moral claims concerning death must be based on the concept of human rights. (shrink)

This paper presents an overview of the key ethical questions of performing gene editing research on military service members. The recent technological advance in gene editing capabilities provided by CRISPR/Cas9 and their path towards first-in-human trials has reinvigorated the debate on human enhancement for non-medical purposes. Human performance optimization has long been a priority of military research in order to close the gap between the advancement of warfare and the limitations of human actors. In spite of this focus on temporary (...) performance improvement, biomedical enhancement is an extension of these endeavours and the ethical issues of such research should be considered. In this paper, we explore possible applications of CRISPR to military human gene editing research and how it could be specifically applied towards protection of service members against biological or chemical weapons. We analyse three normative areas including risk–benefit analysis, informed consent, and inequality of access as it relates to CRISPR applications for military research to help inform and provide considerations for military institutional review boards and policymakers. (shrink)

A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. The mere difference view, endorsed by Elizabeth Barnes, claims that physical and sensory disabilities by themselves do not make a person worse off overall—any negative impacts on welfare are due to social injustice. This article argues that Barnes’s Value Neutral Model does not extend to intellectual disability. Intellectual disability is (1) intrinsically bad—by itself it makes a person worse off, apart from a non-accommodating environment; (...) (2) universally bad—it lowers quality of life for every intellectually disabled person; and (3) globally bad—it reduces a person’s overall well-being. While people with intellectual disabilities are functionally disadvantaged, this does not imply that they are morally inferior—lower quality of life does not mean lesser moral status. No clinical implications concerning disability-based selective abortion, denial of life-saving treatment, or rationing of scarce resources follow from the claim that intellectual disability is bad difference. (shrink)

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

Ethical debate surrounding human enhancement, especially by biotechnological means, has burgeoned since the turn of the century. Issues discussed include whether specific types of enhancement are permissible or even obligatory, whether they are likely to produce a net good for individuals and for society, and whether there is something intrinsically wrong in playing God with human nature. We characterize the main camps on the issue, identifying three main positions: permissive, restrictive and conservative positions. We present the major sub-debates and lines (...) of argument from each camp. The review also gives a flavor of the general approach of key writers in the literature such as Julian Savulescu, Nick Bostrom, Michael Sandel, and Leon Kass. (shrink)

The range of opportunities people enjoy in life largely depends on social, biological, and genetic factors for which individuals are not responsible. Philosophical debates about equality of opportunities have focussed mainly on addressing social determinants of inequalities. However, the introduction of human bioenhancement should make us reconsider what our commitment to equality entails. We propose a way of improving morally relevant equality that is centred on what we consider a fair distribution of bioenhancements. In the first part, we identify three (...) main positions in the debate on bioenhancement and equality, and we show how each of them fails to meet the demands of a serious commitment to equality. In the second part, we formulate a new proposal that we think better promotes equality of opportunities: people from disadvantaged socio-economic backgrounds should be given access to bioenhancements while people from privileged socio-economic background should be prohibited from using them. We argue that those who are concerned about the inequality implications of bioenhancement should embrace this solution, rather than reject bioenhancement. (shrink)

Analytic philosophers tend to agree that intentional parental genetic shaping and intentional parental environmental shaping for the same feature are, normatively, on a par. I challenge this view by advancing a novel argument, grounded in the value of fair relationships between parents and children: Parental genetic shaping is morally objectionable because it unjustifiably exacerbates the asymmetry between parent and child with respect to the voluntariness of their entrance into the parent–child relationship. Parental genetic shaping is, for this reason, different from (...) and more objectionable than parental environmental shaping. I introduce a distinction between procreative decisions one makes qua mere procreator—that is, without the intention to rear the resulting child—and procreative decisions one makes qua procreator-and-future childrearer. Genetic shaping is objectionable when undertaken in the latter capacity: Both selection and enhancement are objectionable because they introduce an unnecessary and avoidable inequality in the parent–child relationship; in the case of enhancement, this also results in harm to the future child. (shrink)

Ist es moralisch verantwortbar, Menschen mit technischen Eingriffen zu verbessern? Der Aufsatz versucht diese Frage zu beantworten, indem zwei Gefahren für Verbesserungswillige beleuchtet werden: der Verlust der Menschlichkeit und der unerwünschte Wandel der individuellen Persönlichkeit. Sodann wird ein „Liberalismus mit Auffangnetz“ als Lösung des Problems vorgestellt, die eine unterschiedliche Bewertung von reversiblen und irreversiblen Eingriffen vornimmt. Im letzten Schritt wird überprüft, wie weit diese Konzeption auch anwendbar ist, wenn Eltern ihre Kinder verbessern lassen wollen, also ein „informed consent“ nicht vorausgesetzt (...) werden kann. Dabei werden Argumente zurückgewiesen, die Habermas gegen eine Verbesserung von Kindern vorgebracht hat. (shrink)

Ist es moralisch verantwortbar, Menschen mit technischen Eingriffen zu verbessern? Der Aufsatz versucht diese Frage zu beantworten, indem zwei Gefahren für Verbesserungswillige beleuchtet werden: der Verlust der Menschlichkeit und der unerwünschte Wandel der individuellen Persönlichkeit. Sodann wird ein „Liberalismus mit Auffangnetz“ als Lösung des Problems vorgestellt, die eine unterschiedliche Bewertung von reversiblen und irreversiblen Eingriffen vornimmt. Im letzten Schritt wird überprüft, wie weit diese Konzeption auch anwendbar ist, wenn Eltern ihre Kinder verbessern lassen wollen, also ein „informed consent“ nicht vorausgesetzt (...) werden kann. Dabei werden Argumente zurückgewiesen, die Habermas gegen eine Verbesserung von Kindern vorgebracht hat. (shrink)

It is commonly believed that disability disqualifies people from full participation in or recognition by society. This view is rooted in eugenic logic, which tells us that our world would be a better place if disability could be eliminated. In opposition to this position, I argue that that disability is inherent in the human condition and consider the bioethical question of why we might want to conserve rather than eliminate disability from our shared world. To do so, I draw together (...) an eclectic, rather than systematic, configuration of counter-eugenic arguments for conserving disability. The idea of preserving intact, keeping alive, and even encouraging to flourish denoted by conserve suggests that disabilities would be better understood as benefits rather than deficits. I present, then, a reading of disability as a potentially generative resource rather than unequivocally restrictive liability. In other words, what I consider here is the cultural and material contributions disability offers to the world. (shrink)

This article focuses on the follow question: Are human enhancement technologies likely to be justice impairing or justice promoting? We argue that human enhancement technologies may not be inherently just or unjust, but when situated within obtaining social contexts they are likely to exacerbate rather than alleviate social injustices.

This essay considers principles of distributive justice for access to reproductive biotechnologies which make it is possible to enhance the traits of human offspring. I provide prima facie reason to think that redistributive principles apply to genetic goods and proceed to evaluate the way in which four distributive patterns - egalitarianism, luck egalitarianism, prioritarianism, and sufficientarianism - would implement a just distribution of genetic goods. I argue that the currency of genetic redistribution consists in natural primary goods like health, vision, (...) and rationality as these goods contribute to the biological component of basic capabilities, like being healthy, seeing properly, and being able to reason. I develop a mixed sufficiency/priority approach to genetic enhancement, and defend this approach against objections. (shrink)

In a little noted passage in A Theory of Justice, John Rawls argued that genetic intervention in the traits of offspring may be morally required as a matter of distributive justice. Given that the “greater natural assets” of each “enables him to pursue a preferred plan of life[,]” Rawls wrote, the parties to the original position “want to insure for their descendents the best genetic endowment.…Thus over time a society is to take steps at least to preserve the general level (...) of natural abilities and to prevent the diffusion of serious defects.…The pursuit of reasonable policies in this regard is something that earlier generations owe to later ones.” Whether biological enhancement actually is a moral obligation we owe to future generations is a question that I have taken up elsewhere, but which lies beyond my scope here. If we agree with Rawls that some measure of safe and effective genetic intervention may be required as a matter of justice, it stands to ask how the distribution of genetic goods – that is, the hereditary basis of human traits – should be carried out. (shrink)

Fundamental differences between current and past knowledge in the field of biotechnology mean that we now have at our disposal the means to irreversibly change what is meant by ‘human nature’. This paper explores some of the ethical issues that accompany the attempt to increase scientific control over the human genetic code in what amounts to a diminishing of difference and the reduction of human life to scientific explanations at the expense of spiritual, cultural and communal considerations. Within such a (...) limited view, the critical role of education is reduced in favour of promoting psychological efficiency, with the possibility of accelerating learning and increasing intellectual capacity through genetic manipulation. A major concern expressed in the paper is the fine line between corrective therapy and psychological enhancement: Who should be defining the normal range of human difference? And what degree of caution should be required in redesigning future generations? The unknown dangers inherent in the application of genetic technology to human life suggests that current precautions may not go far enough in recognising that education is a contestable field. (shrink)

In the newly emerging debates about genetics and justice three distinct principles have begun to emerge concerning what the distributive aim of genetic interventions should be. These principles are: genetic equality, a genetic decent minimum, and the genetic difference principle. In this paper, I examine the rationale of each of these principles and argue that genetic equality and a genetic decent minimum are ill-equipped to tackle what I call the currency problem and the problem of weight. The genetic difference principle (...) is the most promising of the three principles and I develop this principle so that it takes seriously the concerns of just health care and distributive justice in general. Given the strains on public funds for other important social programmes, the costs of pursuing genetic interventions and the nature of genetic interventions, I conclude that a more lax interpretation of the genetic difference principle is appropriate. This interpretation stipulates that genetic inequalities should be arranged so that they are to the greatest reasonable benefit of the least advantaged. Such a proposal is consistent with prioritarianism and provides some practical guidance for non-ideal societies–that is, societies that do not have the endless amount of resources needed to satisfy every requirement of justice. (shrink)

Volume 20, Issue 8, August 2020, Page 19-21.

In the near future we may be able to manipulate human embryos through genetic intervention. Jürgen Habermas has argued against the development of technologies which could make such intervention possible. His argument has received widespread criticism among bioethicists. These critics argue that Habermas's argument relies on implausible assumptions about human nature. Moreover, they challenge Habermas's claim that genetic intervention adds something new to intergenerational relationships pointing out that parents have already strong control over their children through education. In this paper (...) a new approach to Habermas's theory is suggested which makes clear that he has a strong point against genetic intervention. A more charitable reading of Habermas with respect to his assumptions concerning human nature is presented. Moreover, Habermas's assumption concerning the power of genetic controlling is evaluated. By means of a close comparison of genetic and educational control it is shown that Habermas's argument relies on much weaker assumptions than generally understood. (shrink)

This article examines some of the controversial issues emerging from the privatization of biomedical research and commercialization of biotechnology. The aim is to identify the dominant social, political, and ethical risks associated with the recent shift from academic to corporate science and from the increasing emphasis on investing in research projects that will result in the award of a monopoly patent. Identifying these risks may ultimately assist policy makers in designing new policies or reforming existing practices that will come closer (...) to achieving an equitable balance between science pursued for the advance of knowledge and science pursued for patents and profit. The discussion may also assist the research directors or managers of biopharmaceutical companies in designing corporate policies that will optimize the balance between the serendipity of scientific discovery and the discipline of strategic business planning. (shrink)

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

This paper discusses the predicament of Oscar Pistorius. He is a Paralympic gold medallist who wishes to participate in the Olympics in Beijing in 2008. Following a brief introductory section, the paper discusses the arguments that could be, and have been, deployed against his participation in the Olympics, should he make the qualifying time for his chosen event (400m). The next section discusses a more hypothetical argument based upon a specific understanding of the fair opportunity rule. According to this, there (...) may be a case for allowing Pistorius to compete even if he should fail to make the official qualifying time. The final part of the paper reviews the situation at the time of writing and offers some assessment of the strategy of the IAAF in responding to it. It is argued below that the proper focus for assessment of Pistorius's eligibility to compete should not be on whether his blades lead to his having an unfair advantage over his competitors, but instead should focus on whether what he does counts as running. (shrink)

Transhumanism is an ideology that embraces the use of various forms of biotechnology to enhance human beings toward the emergence of a “posthuman” kind. In this article, I contrast some of the foundational tenets of Transhumanism with those of Christianity, primarily focusing on their respective anthropologies—that is, their diverse understandings of whether there is an essential nature shared by all human persons and, if so, whether certain features of human nature may be intentionally altered in ways that contribute toward how (...) each views human flourishing. A central point of difference concerns Transhumanists’ aim of attaining “substrate independence” for the human mind, such that one’s consciousness could be uploaded into a cybernetic environment. Christian anthropology, on the other hand, considers embodiment, with its characteristics of vulnerability and finitude, to be an essential feature of human nature—hence, Christians’ belief in bodily resurrection. Despite Christianity and Transhumanism having fundamental differences, I contend that Christians may support moderate forms of enhancement oriented toward supporting our flourishing as living, sentient, social, and rational animals. (shrink)

The application of genetic technologies in China, especially in the area of prenatal genetic testing, is rapidly increasing in China. In the wealthy regions of China, prenatal genetic testing is already very widely adopted. We argue that the government should actively promote prenatal genetic testing to the poor areas of the country. In fact, the government should prioritize resources first to make prenatal genetic testing a standard routine care with an opt-out model in these area. Healthcare professions would be required (...) to inform pregnant women about the availability of genetic testing and provide free testing on a routine basis unless the parents choose not to do so. We argue that this proposal will allow parents to make a more informed decision about their reproductive choices. Secondarily, this proposal will attract more healthcare professionals and other healthcare resources to improve the healthcare infrastructures in the less-developed regions of the country. This will help to reduce the inequity of accessing healthcare services between in different regions of China. We further argue that this policy proposal is not practicing eugenics. (shrink)

Much work in contemporary bioethics defends a broadly liberal view of human reproduction. I shall take this view to comprise (but not to be exhausted by) the following four claims.1 First, it is permissible both to reproduce and not to reproduce, either by traditional means or by means of assisted reproductive techniques such as IVF and genetic screening. Second, it is permissible either to reproduce or to adopt or otherwise foster an existing child to which one is not biologically related. (...) Third, it is permissible either to bring into existence a child with the greatest chance of a life of maximum human flourishing or to bring into existence a child with a life worth living but with less than the greatest chance of a life of maximum human flourishing. Fourth, it is impermissible to bring into existence a child whose life is either certain or likely to fall below some baseline of a human life minimally worth living. (shrink)

This chapter concerns the normativity of the concepts of paternalism and libertarian paternalism. The first concept is central in evaluating public health policy, but its meaning is controversial. The second concept is equally controversial and has received much attention recently. It may or may not shape the future evaluation of public health policy. In order to facilitate honest and fruitful debate, I consider three approaches to these concepts, in terms of their normativity. Concepts, I claim, may be considered nonnormative, normatively (...) charged, or normative in that they involve more complex relationships between values or duties. While the last approach is often best, other approaches may be appropriate depending on the context and purpose of discussion. The chapter’s conceptual investigation is illustrated by application to two public health policies: a tax on the consumption of fat and the encouragement of health-promoting food displays in restaurants and supermarkets. (shrink)

The acquisition of genetic information (GI) confronts both the affected individuals and healthcare providers with difficult, ambivalent decisions. Genetic responsibility (GR) has become a key concept in both ethical and socioempirical literature addressing how and by whom decision-making with respect to the morality of GI is approached. However, despite its prominence, the precise meaning of the concept of GR remains vague. Therefore, we conducted a systematic literature review on the usage of the concept of GR in qualitative, socioempirical studies, to (...) identify the main interpretations and to provide conceptual clarification. The review identified 75 studies with primarily an Anglo-American setting. The studies focused on several agents: the individual, the family, the parent, the healthcare professional, and the institution and refer to the concept of GR on the basis of either a rational/principle-oriented approach or an affective/relational approach. A subtype of the rational/principle-oriented approach is the reactive approach. The review shows how the concept of GR is useful for analyzing and theorizing about socioempirical findings within qualitative socioempirical studies and also reveals conceptual deficits in terms of insufficient theoretical accuracy and heterogeneity, and in the rarity of reflection on cultural variance. The vagueness and multiplicity of meanings for GR in socioempirical studies can be avoided by more normative-theoretical explication of the underlying premises. This would provide a higher degree of differentiation of empirical findings. Thereby, the complex findings associated with the individual and social implications of genetic testing in empirical studies can be better addressed from a theoretical point of view and can subsequently have a stronger impact on normative and policy debates. (shrink)

In recent work, Andrew T. Forcehimes and Robert B. Talisse correctly note that G.A. Cohen’s fact-insensitivity thesis, properly understood, is explanatory. This observation raises an important concern. If fact-insensitive principles are explanatory, then what role can they play in normative deliberations? The purpose of my paper is, in part, to address this question. Following David Miller, I indicate that on a charitable understanding of Cohen’s thesis, an explanatory principle explains a justificatory fact by completing an otherwise logically incomplete inference. As (...) a result, the explanatory role such a principle plays is inseparable from its status as a (not necessarily successful) justificatory reason. With this interpretation in hand, I then proceed to argue that Lea Ypi’s and Robert Jubb’s recent criticisms fail to undermine Cohen’s thesis, and that fact-insensitive principles, once discovered, are especially helpful for purposes of deliberation in circumstances characterized by changing and changeable feasibility constraints. (shrink)

In this paper, I explore the “expressivist critique” of the use of prenatal testing to select against the birth of persons with impairments. I begin by setting out the expressivist critique and then highlighting, through an investigation of an influential objection to this critique, the ways in which both critics and proponents of the use of technologies of genetic selection negotiate a difficult set of dilemmas surrounding the relationship between genes and identity. I suggest that we may be able to (...) advance the debate about these technologies by becoming more aware of the ways in which this debate is itself in part a political contestation over this relationship. Ultimately, I will argue, the real force of the expressivist objection lies in its capacity to draw our attention to political questions about the role of the state and about relationships between different social groups rather than between parents and prospective children. That is to say, crucial issues, when evaluating the force of this criticism, turn out to be: the nature of the institutions which determine how decisions about prenatal selection are made; and how we think of each other, that is, what we take to be the defining characteristics of human beings. Paradoxically, arguments about the ethics of the “sorting society”, both supportive and critical, are an important arena in which these institutions and these ideas about identity are contested and shaped. An increased awareness of the reflexive nature of the process of debating these issues may assist us in better negotiating them. (shrink)

In this chapter, I propose the mechanism of cognitive enhancement based on studies of cognitive-enhancing drugs and behavioral training. I argue that there are mechanistic differences between cognitive-enhancing drugs and behavioral training due to their different enhancing effects. I also suggest possible mechanisms for cognitive-enhancing drugs and behavioral training and for the synergistic effects of their simultaneous application.