A governing principle in medical ethics is respect for patient autonomy. This principle is commonly drawn upon in order to argue for the permissibility of assisted dying. In this paper I explore the proper role that respect for patient autonomy should play in this context. I argue that the role of autonomy is not to identify a patient’s best interests, but instead to act as a side-constraint on action. The surprising conclusion of the paper is that whether or not it (...) is in the best interests for the patient to die is a morally objective matter. This allows for the possibility that it can be in the best interests of the patient to die even if she autonomously considers it to be in her best interest to continue living. I argue that concerns about ‘mandatory’ euthanasia can be met when patient autonomy is respected as a side-constraint on action. Ultimately, this means that assisted dying is permissible, not because the autonomous patient views her suffering to be unbearable, but because it is in her objective best interests and she permitted it via her consent. (shrink)

This collection features comprehensive overviews of the various ethical challenges in organ transplantation. International readings well-grounded in the latest developments in the life sciences are organized into systematic sections and engage with one another, offering complementary views. All core issues in the global ethical debate are covered: donating and procuring organs, allocating and receiving organs, as well as considering alternatives. Due to its systematic structure, the volume provides an excellent orientation for researchers, students, and practitioners alike to enable a deeper (...) understanding of some of the most controversial issues in modern medicine. (shrink)

This paper explores one aspect of the social implications of new reproductive technologies, namely, the impact such technologies have on our understandings of family structures and our expectations of children. In particular it considers whether the possibilities afforded by such technologies result in a more contractual and commodified understanding of children. To do this the paper outlines the possibilities afforded by NRTs and their commodificatory tendencies; second, it explores the commodification debate using the somewhat parallel example of commodification of organs; (...) and third, in light of these debates the link between the commodification of body parts and persons is addressed. It will argue that there is a prime facie connection between body parts and persons and thus, although needing to be balanced with other ethically relevant factors, commodification remains an issue of ethical concern. Accordingly we should only be supporting potentially commodifying practices when there are ethically pressing reasons to do so (such as in organ transplantation). Moreover given this link between body part and persons we should attempt to lessen commodifying attitudes and thus should resist the increasing use of practices which regard children as having choose-able parts. (shrink)

This paper suggests that many of the pressing dilemmas of bioethics are global and structural in nature. Accordingly, global ethical frameworks are required which recognize the ethically significant factors of all global actors. To this end, ethical frameworks must recognize the rights and interests of both individuals and groups (and the interrelation of these). The paper suggests that the current dominant bioethical framework is inadequate to this task as it is over-individualist and therefore unable to give significant weight to the (...) ethical demands of groups (and by extension communal and public goods). It will explore this theme by considering the inadequacy of informed consent (the ‘global standard’ of bioethics) to address two pressing global bioethical issues: medical tourism and population genetics.Using these examples it will show why consent is inadequate to address all the significant features of these ethical dilemmas. Four key failures will be explored, namely,• That the rights and interests of those related (and therefore affected) are neglected;• That consent fails to take account of the context and commitments of individuals which may constitute inducement and coercion;• That consent alone does not have the ethical weight to negate exploitation or make an unjust action just (‘the fallacy of sufficiency’);• That consent is a single one-off act which is inappropriate for the types of decision being made.It will conclude by suggesting that more appropriate models are emerging, particularly in population genetics, which can supplement consent. (shrink)

The principle of respect for autonomy in clinical ethics is frequently linked to bioethics’ neglect of community-level ethical considerations. I argue that the latter is not an inevitable consequence of the former; rather, that neglect results from a common interpretation of respect for autonomy in solely synchronic and individual terms. A relational understanding of autonomy reveals the way in which respect inescapably involves diachronic and social dimensions. When these are acknowledged, the association between respect for autonomy and liberal individualism is (...) weakened. Such respect has more in common with communitarian approaches, and it need not conflict with the incorporation of collective-level values into ethical deliberation. (shrink)

Recent criticism of the role of respect for autonomy in bioethics has focused on that principle's status as ‘dogma’ or ‘ideology’. I suggest that lying beneath many applications of respect for autonomy in medical ethics are some influential dogmas — propositions accepted, not as explicit premises or as a consequence of reasoned argument, but simply because moral problems are so frequently framed in such terms. Furthermore, I will argue that rejecting these dogmas is vital to secure and protect an autonomy (...) worthy of respect. The concept of autonomy that is widely applied in clinical ethics emphasises decision-making competence, at the expense of considering the authenticity of those decisions. Respect for such autonomy is interpreted in largely synchronic and individual terms — concerned with the isolated decisions of individual agents — and thus neglects the diachronic and social dimensions of many moral dilemmas arising in the health care context. I will examine how these unwritten rules lead to an impoverished understanding of respect and a systematic neglect in bioethics of certain kinds of ethical consideration, and draw on insights from feminist and communitarian work on autonomy to sketch an alternative approach to understanding respect, modelled on the norms of respectful conversation — a respect that is firstly concerned with engaging with the another as a potential giver and bearer or reasons, and working with them to promote both individual and social flourishing. (shrink)

The shortage of available organs for transplantation, organ tourism and illegal kidney transplantations put the question of paid organ donation and commercialism high on the agenda. Ethicists as J. Radcliffe-Richards and R.Veatch have reopened the debate. Therefore it is necessary and useful to check the main arguments pro and con. The advocates of paid organ donation refer to autonomy and pragmatic considerations. Why not regulate an ineradicable practice? The opponents rely on the dignity and integrity of the human body and (...) on justice. They are afraid of exploitation of the poor. A thorough analysis of the debate reveals that the arguments pro and con are incompatible and that the ethical debate leads nowhere. Furthermore, paid organ donation will stimulate the instrumentalisation and commodification of the human body. It brings about a further medicalisation of society where the wishes of the patient and the ‘cure’ prevails over the ‘care’, prevention of organ failure and scientific research . On the basis of the ethical impasse and especially on the basis of these implicit sociological considerations we make a plea against paid organ donation. Altruistic donation and solidarity must remain the basis of organ transplantation. Solidarity is fed by charity and fraternity , the two great sources of western culture and morality. These also must remain the basic inspiration of medicine in general and of organ transplantation in particular. (shrink)

Worldwide 1.2 million people are dying from kidney failure each year, and in the USA alone, approximately 100 000 people are currently on the waiting list for a kidney transplant. One possible solution to the kidney shortage is for governments to pay donors for one of their healthy kidneys and distribute these kidneys according to need. There are, however, compelling objections to this government-monopsony model. To avoid these objections, I propose a small adjustment to the model. I suggest we reward (...) kidney sellers with both money and a ceremony that celebrates their noble act. They should, in other words, receive a prize rather than a price. (shrink)

A prominent defence of a market in organs from living donors says that if we truly care about people in poverty, we should allow them to sell their organs. The argument is that if poor vendors would have voluntarily decided to sell their organs in a free market, then prohibiting them from selling makes them even worse off, at least from their own perspective, and that it would be unconscionably paternalistic to substitute our judgements for individuals' own judgements about what (...) would be best for them. The author shows that this ‘Laissez-Choisir Argument’ for organ selling rests on a mistake. This is because the claim that it would be better for people in poverty to sell their organs if given the option is consistent with the claim that it would be even better for them to not have the option at all. The upshot is that objections to an organ market need not be at all paternalistic, since we need not accept that the absence of a market makes those in poverty any worse off, even from their own point of view. The author goes on to argue that there are strong theoretical and empirical reasons for believing that people in poverty would in fact be harmed by the introduction of a market for live donor organs and that the harm constitutes sufficient grounds for prohibiting a market. (shrink)

Proponents of permitting living kidney sales often argue as follows. Many jobs involve significant risks; people are and should be free to take these risks in exchange for money; the risks involved in giving up a kidney are no greater than the risks involved in acceptable hazardous jobs; so people should be free to give up a kidney for money, too. This paper examines this frequently invoked but rarely analysed analogy. Two objections are raised. First, it is far from clear (...) that kidney sales and dangerous jobs involve comparable risks on an appropriately broad comparison. Second, and more importantly, even if they do involve comparable risks it does not follow that kidney sales must be permitted because dangerous jobs are. The analogy assumes that kidney sales are banned for paternalistic reasons. But there may be other, non-paternalistic reasons for the ban. And paternalists, too, can consistently defend the ban even if kidney sales are no riskier than occupations that they find acceptable. Soft paternalists may want to protect would-be vendors from harms that they have not voluntarily chosen. Egalitarian hard paternalists may want to protect already badly off vendors from further worsening their situation. For neither species of paternalist is the size of the risk prevented decisive. I conclude that the analogy with dangerous jobs, while rhetorically powerful, pulls little real argumentative weight. Future debates on living kidney sales should therefore proceed without it. (shrink)

Can transfusions of blood plasma slow down ageing or even rejuvenate people? Recent preclinical studies and experimental tests inspired by the technique known as parabiosis have aroused great media attention, although for now there is no clear evidence of their effectiveness. This line of research and the interest it is triggering testify to the prominent role played by the idea of combating the “natural” ageing process in the scientific and social agenda. While seeking to increase the duration of healthy living (...) time may be considered a duty, it also raises ethical questions about how to pursue this goal. Specifically, therapies and techniques accessible only to a fraction of the population seem destined to exponentially increase social inequality and to produce undesirable consequences. In this article we address the issue precisely in the light of the prospected use of plasma for the rejuvenation of a small elite of people. (shrink)

Nancy Scheper-Hughes is one of the most prominent critics of markets in human organs. Unfortunately, Scheper-Hughes rejects the view that markets should be used to solve the current shortage of transplant organs without engaging with the arguments in favour of them. Scheper-Hughes’s rejection of such markets is of especial concern, given her influence over their future, for she holds, among other positions, the status of an adviser to the World Health Organization on issues related to global transplantation. Given her influence, (...) it is important that Scheper-Hughes’s moral condemnation of markets in human organs be subject to critical assessment. Such critical assessment, however, has not generally been forthcoming. A careful examination of Scheper-Hughes’s anti-market stance shows that it is based on serious mischaracterisations of both the pro-market position and the medical and economic realities that underlie it. In this paper, the author will expose and correct these mischaracterisations and, in so doing, show that her objections to markets in human organs are unfounded. (shrink)

In medical practice, the doctrine of informed consent is generally understood to have priority over the medical practitioner’s duty of care to her patient. A common consequentialist argument for the prioritisation of informed consent above the duty of care involves the claim that respect for a patient’s free choice is the best way of protecting that patient’s best interests; since the patient has a special expertise over her values and preferences regarding non-medical goods she is ideally placed to make a (...) decision that will protect her interests. In this paper I argue against two consequentialist justifications for a blanket prioritisation of informed consent over the duty of care by considering cases in which patients have imperfect access to their overall best interests. Furthermore, I argue that there are cases where the mere presentation of choice under the doctrine of informed consent is detrimental to patient best interests. I end the paper by considering more nuanced approaches to resolving the conflict between informed consent and the duty of care and consider the option of permitting patients to waive informed consent. (shrink)

In this paper, I argue that a definition of paternalism must meet certain methodological constraints. Given the failings of descriptivist and normatively charged definitions of paternalism, I argue that we have good reason to pursue a normatively neutral definition. Archard's 1990 definition is one such account. It is for this reason that I return to Archard's account with a critical eye. I argue that Archard's account is extensionally inadequate, failing to capture some cases which are clear instances of paternalism. I (...) refine each of his three conditions, ultimately providing an improved definition of paternalistic interference. This revised definition meets specific methodological constraints, offering a definition that is both neutral between anti- and pro-paternalistic intuitions, but that also explains why paternalism is normatively significant. Specifically, this definition captures the conflict between interfering with an individual's choices and treating the individual benevolently, without making paternalism permissible or impermissible by definition. (shrink)

Drawing on a social construction theory of ownership in biological material this paper discusses which differences in biological material might motivate differences in treatment and ownership rights. The analysis covers both the perspective of the person from whom the material originates and that of the potential recipient. Seven components of bundles of rights, drawing on the analytical tradition of Tony Honoré, and their relationship to various types of biological material are investigated. To exemplify these categories the cases of a heart, (...) a kidney, stem cells and hair are used. (shrink)

This article brings together the United Nations’ International Covenant on Economic, Social and Cultural Rights (ICESCR) and John McMurtry’s theory of value. In this perspective, the ICESCR is construed as a prime example of “civil commons,” while McMurtry’s theory of value is proposed as a tool of interpretation of the covenant. In particular, McMurtry’s theory of value is a hermeneutical device capable of highlighting: (a) what alternative conception of value systemically operates against the fulfilment of the rights enshrined in the (...) ICESCR; (b) the increased relevance of the ICESCR with regard to the current global economic crisis; (c) the parameters to determine the degree to which the rights at issue have been realized. Reflections on environmental implications of both the ICESCR and McMurtry’s axiology conclude the article. (shrink)

This thesis examines the practice of haemodialysis and kidney transplantation, the two medical therapies available for persons with kidney failure, from a phenomenological perspective. A basic assumption made in the thesis is that contemporary biomedicine is deeply embedded in the cultural, historical, economic, and political circumstances provided by the particular local, national, and transnational contexts in which it is practiced. The aim of the thesis is twofold. On the one hand, the aim is to examine the forms of person- and (...) patienthood enacted and negotiated in haemodialysis and kidney transplantation care and in the daily lives of persons with kidney failure. On the other hand, the aim is to investigate the ways in which the enacted and negotiated forms of person- and patienthood are culturally embedded and normatively charged. In order to examine and investigate this twofold aim, an empirical material has been gathered that comprises observations and in-depth interviews with patients and caregivers at four haemodialysis units, one in Riga, Latvia, and three in Stockholm, Sweden. The theoretical approach and methodology of the study is cultural and phenomenological in character, drawing on an ethnological and anthropological understanding of culture as processual and relational, and on a phenomenological understanding of personhood as embodied and intertwined with the surrounding world. The thesis shows that patients’ encounters and attempts to deal with the diagnoses and treatments associated with kidney failure are complex and often misalign them with the normatively charged orientations enacted and recommended by medicine. The complex situation that emerges when they undergo transplantation, for example, stands in stark contrast to the widespread official view of organ transplantation as a self-evidently health-bringing and normalising therapy. Through their repeated and extensive experiences of undergoing haemodialysis and living with the disease, patients eventually become able to create a synthesis between their lived experiences of their own body and their body as a medical object – what in the thesis is called a ‘sick body’ – a synthesis that allows them to reorient themselves in life and experience a sense of direction. This process relies, to a large extent, on the temporal structure that haemodialysis affords life; it is by repeatedly undergoing the treatment that patients become able to create a sick body. Even so, many of them find this temporal structure problematic; they experience it as disruptive of their control and future-orientedness and as causing an existentially difficult-to-handle boredom. The thesis also shows that the political developments and the norms prevalent in the two national contexts studied greatly affect the orientations of the treatment practices and the participants’ lives. In both Riga and Stockholm, ideals of freedom, activity, control, and self-actualisation influence what forms of patienthood and personhood are enacted. The study indicates that persons who fall ill with a serious and chronic disease only gradually become able to understand and actively cope with their differently embodied circumstances of life. This suggests that medical professionals should not too hastily enlist their patients as experts on their own bodies, but rather provide them with the time and support necessary for making repeated attempts at creating and maintaining a life with a sick body. (shrink)

According to the doctrine of informed consent medical procedures are morally permissible when a patient has consented to the treatment. Problematically it is possible for a patient to consent to or refuse treatment which consequently leads to a decline in her best interests. Standardly, such conflicts are resolved by prioritising the doctrine of informed consent above the requirement that the medical practitioner acts in accordance with the duty of care. This means that patient free choice is respected regardless as to (...) whether her choice leads to a decline in her best interests, since to disrespect patient choice would be an instance of ‘unwarranted’ paternalism. This thesis defends the claim that in cases where patient consent comes into conflict with her best interests, paternalistic interference is in fact justified. The ambition of the thesis is thus twofold: in the first place I argue that the doctrine of informed consent cannot be used as an ethical guarantor for medical decision making. Secondly I will conclude that hard paternalism is justified in medical practice, thereby calling for a reversal of the prioritisation of informed consent procedures over the medical practitioner’s duty of care. (shrink)

Commodification is a broad and crosscutting issue that spans debates in ethics (from prostitution to global market practices) and bioethics (from the sale of body parts to genetic enhancement). There has been disagreement, however, over what constitutes commodification, whether it is happening, and whether it is of ethical import. This chapter focuses on one area of the discussion in bioethics – the commodification of human tissue – and addresses these questions – about the characteristics of commodification, its pervasiveness, and ethical (...) significance – in order to clarify and map the commodificatory debate. The chapter does this in three parts. First, it defines commodification as the shift from “persons” to “things” and from “relationships” to services for “contract.” Second, using examples of kidney and gamete sale and commercial surrogacy, it argues that commodification is rife in bioethics. Third, it contends that commodification is an ethical problem for three key reasons: First, because it leads to exploitation; second, because some things should not be for sale; and third, because it damages social goods. The chapter concludes that commodification and commodificatory practices should be resisted. (shrink)

The aim of this paper is to explore the complexity of the concept of the victim within the context of organ trading. By examining the intricate phenomenon of organ trade, we show how prevailing notions of victimhood form the basis of concrete social practices. The empirical basis for this exploration comprises in-depth interviews conducted during fieldwork in South Africa and Kosovo. We also draw on research undertaken at various expert meetings. What our research in these locations attests to is that (...) one-dimensional and generalised conceptualisations of victimhood are rife, and that these tend to be founded on a pre-theorised opposition between agency and victimhood. For persons who become practically and intimately involved in dealing with cases of organ trade – such as investigators and prosecutors – such conceptualisations do not hold. What is required is an understanding of victimhood that takes into account its complexity. In this paper, we explore attempts to grasp and reduce this complexity, and argue against generalised concepts of victimhood and for concepts that are sensitive to contextual and relational variations. (shrink)