Showing papers in "Bioethics in 1999"

How to Get Serious Answers to the Serious Question: ‘How have you been?’: Subjective Quality of Life (QOL) as an Individual Experiential Emergent Construct

Abstract: Medical, scientific and societal progress has been such that, in a universalist humanist perspective such as the WHO’s, it has become an ethical imperative for the primary endpoints in evidence based health care research to be expressed in e.g. Quality Adjusted Life Years (QALYs). The classical endpoints of discrete health-related functions and duration of survival are increasingly perceived as unacceptably reductionistic. The major problem in ‘felicitometrics’ is the measurement of the ‘quality’ term in QALYs. That the mental, physical and social domains, each containing many dimensions and items, all contribute to QOL is uncontroversial. What is controversial, is the weight of the different dimensions in overall QOL. It has been shown to be very different between different patient populations. In human individuals, assuredly complex systems, the many dimensions and items of QOL observably interact, probably sometimes also in chaotic ways. In these conditions, the weights of isolated items in individuals become for all practical purposes meaningless. Therefore, the much used multi-item questionnaires at best describe, but do not evaluate QOL, neither in individuals, nor in populations. For example, allergic patients treated with cetirizine scored better than those a placebo on all dimensions of the SF-36, a standard QOL questionnaire. Here there is no serious doubt that the treatment improved QOL, because it is highly unlikely that any important dimension on which the patient groups would have scored otherwise is missing in the SF-36. However, whether piracetam treatment of acute stroke, which improved the surrogate endpoints neurological and functional scores, also improved QOL is plausible, but will be proven only when comprehensive QOL measurement will have been done. And suppose in randomised populations of end-stage metastatic solid cancer patients, one would compare palliative last-line chemotherapy with only palliative care, and one would, as can be expected, find no significant differences in average survival, and chemotherapy superior for the mental domain, but inferior for the physical comfort domain: we would not know which treatment, on aggregate, would be the better. The problem is that QOL is an individual and emergent construct, the resultant of a great many intractions, and of a different order than its contributing components. Overall QOL can therefore best be captured only as the Gestalt of a global self-assessment. Just as people in everyday life, while acting under uncertainty, make global assessments all the time, so they can seriously answer the serious question: ‘How have you been?’ A solemn, practical, non peer-relativistic, non-cultural, experiential, and well tolerated way to obtain such responses is Anamnestic Comparative Self Assessment (ACSA), in which the subjects' memories of the best and the worst times in their life experience define their individual scale of QOL. ACSA is thus both exquisitely idiosyncratic, and yet can in a universalist humanistic perspective be considered generic. Using both a multi-item questionnaire and a global assessment allows by one logistic regression, to estimate the weights of the dimensions and items in populations, and thus identify those whose improvement would most contribute to the QOL of the greatest number. A combined approach to measurement of QOL is necessary to maximise the utility of QOL interventions.

Cross-cultural issues in European bioethics.

Abstract: European biomedical ethics is often contrasted to American autonomy-based approaches, and both are usually distinguished as 'Western'. But at least three 'different voices' within European bioethics can be identified: the deontological codes of southern Europe (and Ireland), in which the patient has a positive duty to maximise his or her own health and to follow the doctor's instructions, whilst the physician is constrained more by professional norms than by patient rights; the liberal, rights-based models of Western Europe, in which the patient retains the negative right to override medical opinion, even if his or her mental capacity is in doubt; the social welfarist models of the Nordic countries, which concentrate on positive rights and entitlements to universal healthcare provision and entrust dispute resolution to non-elected administrative officials.

Equipoise, knowledge and ethics in clinical research and practice.

Abstract: It is widely maintained that a clinical trial is ethical only if some form of equipoise between the treatments being compared obtains. To be in equipoise between two treatments A and B is to be cognitively indifferent between the statement 'A is strictly more effective than B' and its negation. It is natural to claim that equipoise regarding A and B is necessary for randomised assignment to treatments A and B to be beneficent and non-maleficent and is sufficient for such an assignment to be fair. Cashing this out precisely is difficult, and various forms of equipoise have been discussed which consider whose equipoise is relevant to the decision. This is to make judgement of equipoise something to be managed socially, while its prima facie significance is supposedly cognitive. Recent reconstructions of equipoise-like concepts in epistemology give clues about how to understand equipoise cognitively. In this paper I examine some of this work and discuss how successful it has been. I suggest that while this work is promising, it still has far to go, and that while equipoise remains the best theory we have of the cognitive justification for clinical trials, it is nonetheless incoherent.

Medicalization as a Moral Problem for Preventive Medicine

Abstract: Preventive health care has a great potential for protecting and improving the health of populations. For many forms of prevention to be effective, the cooperation or involvement of individual persons is necessary. But, as the target groups mostly consist of healthy people, it is far from self-evident that these persons will take the initiative and request to participate in prevention and health promotion programmes. The programmes have to be brought under the attention of members of the target groups. People are invited to enter into a vaccination programme, to have themselves screened, or otherwise take precautions which may help them to avoid illness. These invitations come through many different media and in various settings: through mass media, the family doctor, child health offices, the working place, via sport societies, health insurance, schools, etc. Consequently, people are confronted with opportunities of preventive care throughout daily life and in contexts which do not belong to the traditional realm of medicine and health care.

A care perspective on coercion and autonomy.

Abstract: In the Netherlands there is a growing debate over the possibility of introducing 'compassionate interference' as a form of good psychiatric care. Instead of respecting the autonomy of the patient by adopting an attitude of non-interference, professional carers should take a more active and committed role. There was a great deal of hostile reaction to this suggestion, the most commonly voiced criticism being that it smacked of 'modern paternalism.' Still, the current conception of care leaves us with a paradox. On the one hand patients are regarded as individuals who have a strong interest in (and a right to) freedom and non-interference; on the other hand many of them have a desperate need for flourishing, viable relationships. In fact, part of their problem is that they cannot relate very well with other people. This creates a dichotomy, because respecting patients' autonomy often means that they cannot be given the help they so desperately need. In this respect current care practices do not answer the caring needs of these patients. The criticism on care practices is to be considered as important. It invites us to reexamine and reevaluate the current conception of caring relationships and its main values. In line with this reexamination an alternative perspective on care is introduced in this paper, a perspective in which 'compassionate interference' is not so much a threat to autonomy, but a means of attaining autonomy. For this we need a different definition of autonomy than that commonly used in current care practice.

Is there an Asian bioethics

Abstract: Is there an Asian bioethics? Some people might consider it blasphemous even to ask this question. But this paper asks it not so much to seek an answer as to clarify what it could actually mean. The idea is to sort out the presuppositions and possible implications of asserting the existence of an Asian bioethics. In the end, this paper makes the following points: (1) In the attempt to assert an Asian identity, one must be careful not to commit the mistake of universalizing (among Asians) a single Asian perspective; and (2) In the face of pluralism and multi-culturalism, there is some room for a kind of universalist ethics that is founded on a collage of culturally inspired perspectives rather than on a single standard of morality.

Hope and deception.

Abstract: Convinced of hope’s therapeutic benefits, physicians routinely support patients’ false hopes, often with family collusion and vague, euphemistic diagnoses and prognoses, if not overt lies. Bioethicists charge them with paternalistic violations of Patient Autonomy. There are, I think, too many morally significant exceptions to accept the physician’s rationales or the bioethicist’s criticisms, stated sweepingly. Physicians need to take account of the harms caused by loss of hopes, especially false hopes due to deception, as well, as of the harms of successfully maintained deceptive hopes. As for autonomy, hopes – even if based on deception – can protect and enhance autonomy, understood broadly as the capacity to lead a chosen or embraced life. Deception aside, patients’ hopes often rest on beliefs about possible rather than probable outcomes – beliefs themselves supported by optimism, ‘denial’, or self-deception. Such ‘possibility-hopes’ may conflict with physicians’ often more fact-sensitive ‘probability-hopes.’ To resolve such conflicts physicians may try to ‘down-shift’ patients’ or parents’ hopes to lesser, more realistic hopes. Alternatively, physicians may alter or enlarge their own professional hopes to include the ‘vital hopes’ that define the lives of patients or parents, as well as ‘survival hopes’ needed to face and bear the loss of loved ones, especially children. A principle of Hope-giving might help guide such sympathetic hope-accommodations. More generally, it would give Hope a distinct place among Beneficence, Autonomy, and the other moral factors already high-lighted by canonical principles of Medical Ethics. To formulate such a principle, however, we will need a collective Project Hope to pursue deeper philosophical and psychological studies.

Locating the beginnings of pain.

Abstract: This paper examines the question of whether a fetus can feel pain. The question is divided into four sub questions: What is pain? What is the neurology of pain processing? What is the fetus? Are there good reasons for holding that fetuses feel pain? Pain is suggested to be a multi-dimensional phenomenon drawing on emotional and sensory processes – a consequence of a gradual development involving a number of noxious events rather than an automatic consequence of injury or disease. The non-automaticity of pain is emphasised in the discussion of pain neurology that defies explanations based on a specialised neuronal ‘pain-centre’. The development of the fetus is considered with respect to developmental neurobiology, behavioural and neurological responses to stimulation, and hormonal and neurochemical responses to noxious stimulation. While acknowledging that the development of the fetus is complex, especially after 26 weeks gestation, considerable development is still to occur, even after birth. The fetal pain literature is criticised for tending to exaggerate fetal development. Finally, the difficulty of explaining the subjectivity of pain in materialist terms is discussed. Pain is suggested to arise with development of the necessary neurological, cognitive and emotional structures. Pain experience is placed at approximately 12 months of age, though this is within the context of a continuum of awareness rather than a straight ‘on-off’ switch. The major moral implication of this stance is to place the burden of proof for analgesic use onto clinical measures, rather than relying upon the, so far, poorly supported assumption of pain awareness.

Presidential address: Global bioethics -- dream or nightmare?

Abstract: For many of us present at this opening of this fourth world congress of Bioethics here in Tokyo there may be a feeling of the fulfilment of a dream. This joint endeavour of the International Association of Bioethics and the Asian Bioethics Association is a powerful signal that Bioethics is not merely a Western philosophical pastime, but is a discipline that unites East and West, North and South in a common quest for solutions to the countless moral dilemmas of modern medicine and of the evolving biological sciences. To speak of a dream reminds us, perhaps, of the famous speech of Martin Luther King, in which he hoped for, prayed for, genuine racial reconciliation and the dawning of justice for the poor. Perhaps in this Congress, with participants and speakers from all corners of the globe, we will see how the richness of human cultures blends together in a common understanding of the obligations and the opportunities of human inventiveness and moral agency in health care. Perhaps. But is `global bioethics' necessarily the fulfilment of such a dream, or is it perhaps a nightmare, the promotion of a lowest common denominator, homogenised Bioethics? In his poem, The Shield of Achilles, the English poet, W.H.Auden, has retold the legend of the magic shield of Achilles, in which all the glories of ancient culture were revealed to the person gazing upon its surface. But the shield which Auden describes, in its picturing of the callous anonymity of modern societies, shatters the dream of richness and nobility and puts in its place a bleak scene of conformity and meaninglessness:

Advance directives, dementia, and 'the someone else problem'

Abstract: Advance directives permit competent adult patients to provide guidance regarding their care in the event that they lose the capacity to make medical decisions. One concern about the use of advance directives is the possibility that, in certain cases in which a patient undergoes massive psychological change, the individual who exists after such change is literally a (numerically) distinct individual from the person who completed the directive. If this is true, there is good reason to question the authority of the directive - which is supposed to apply to the individual who completed it, not to someone else. This is ‘the someone else problem’. After briefly introducing advance directives as a basis for medical decision-making, this paper elaborates ‘the someone else problem’ in the context of severe dementia. The paper then reconstructs the reasoning that leads to this putative problem and exposes the important underlying assumption that we are essentially persons. An alternative view of what we are, one that regards personhood as inessential, is then considered, before several arguments are advanced in favor of that alternative view. The paper next explores implications for advance directives: ‘The someone else problem’ is effectively dissolved, while it is noted that a related problem (one beyond the paper's scope) may persist. A few implications beyond advance directives are also identified.

Social acceptability, personal responsibility, and prognosis in public judgments and transplant allocation

Abstract: Background: Some members of the general public feel that patients who cause their own organ failure through smoking, alcohol use, or drug use should not receive equal priority for scarce transplantable organs. This may reflect a belief that these patients (1) cause their own illness, (2) have poor transplant prognoses or, (3) are simply unworthy. We explore the role that social acceptability, personal responsibility, and prognosis play in people's judgments about transplant allocation. Methods: By random allocation, we presented 283 prospective jurors in Philadelphia county with one of five questionnaire versions. In all questionnaires, subjects were asked to distribute transplantable hearts between patients with and without a history of three controversial behaviors (eating high fat diets against doctors’ advice, cigarette smoking, or intravenous drug use). Across the five questionnaire versions, we varied the relative prognosis of the transplant candidates and whether their behavior caused their primary organ Results: Subjects were significantly less willing to distribute organs to intravenous drug users than to cigarette smokers or people eating high fat diets (p le; 0.0005), even when intravenous drug users had better transplant outcomes than other patients. Subjects’ allocation decisions were influenced by transplant prognosis, but not by whether the behavior in question was causally responsible for the patients’ organ failure. Conclusion: People's unwillingness to give scarce transplantable organs to patients with controversial behaviors cannot be explained totally on the basis of those behaviors either causing their primary organ failure or making them have worse transplant prognoses. Instead, many people believe that such patients are simply less worthy of scarce transplantable organs.

Justice And Equal Opportunities In Health Care

Abstract: The principle that each individual is entitled to an equal opportunity to benefit from any public health care system, and that this entitlement is proportionate neither to the size of their chance of benefitting, nor to the quality of the benefit, nor to the length of lifetime remaining in which that benefit may be enjoyed, runs counter to most current thinking about the allocation of resources for health care. It is my contention that any system of prioritisation of the resources available for healthcare or of rationing such resources must be governed by this principle. This can have apparently paradoxical conclusions in that it can seem wasteful to give someone with a very slim chance of a lifesaving treatment the same priority as someone with a much better chance. In an important and thoughtful recent paper, Julian Savulescu has concentrated on this apparent weakness and has argued for a particular conception of the good or benefit to be achieved by a healthcare system which purports to demonstrate the inadequacies of an equal opportunities approach to prioritisation and to replace it with an altogether better account. This paper will show that a rational ‘reasons based consequentialism’ is more in line with the equal opportunities approach, which I defended some time ago in these pages, than with that of Savulescu. I shall then examine more closely the conception of equal opportunities in health care and show that if we give weight to an individual's reasons, and what is expected to be good for them, we will opt for exactly the equality based account of distributive justice that I have recommended.

The right to genetic ignorance confirmed.

Abstract: One of the much debated issues around the evolving human genetics is the question of the right to know versus the right not to know. The core question of this theme is whether an individual has the right to know about her own genetic constitution and further, does she also have the right to remain in ignorance. Within liberal traditions it is usually held that people, if they so wish, have the right to all the knowledge available about themselves. This right is based on the value of autonomy or on the right of self-determination, and it is sometimes partly justified as a countermeasure to the authorities' control over people. I do not wish to deny the right to genetic knowledge (about oneself). I think that its existence is self-evident. The argument I want to put forth in this paper is that in liberal societies we should acknowledge people's right to remain in ignorance as well. The only reason for not doing this would be that grave harm to others would follow if people were allowed to make these seemingly self-regarding decisions. Arguments presented against the right to ignorance are two-fold. First there are those arguing against the right to ignorance on the grounds of harm to others, that is, philosophers who do not deny people's right to ignorance in self-related matters but wish to state that genetic ignorance causes harm to others, and this is one of the most commonly accepted reasons for restricting people's freedom. The other line of argument flows from the Kantian view that not even merely self-regarding foolishness (in the eyes of others) should be allowed.

Foundations, frameworks, lenses: the role of theories in bioethics.

Abstract: I explore the implications of the foundation metaphor for understanding the role of moral theories in ethics and bioethics and argue that its disadvantages outweigh its advantages. I then consider two other metaphors that might be used instead, those of frameworks and lenses. I propose that the metaphor of lenses is most promising in providing methodological guidance for drawing on moral theories when deliberating about bioethical problems.

Risk-related standards of competence: continuing the debate over risk-related standards of competence.

Abstract: This discussion paper addresses Ian Wilks' defence of the risk-related standard of competence that appears in Bioethics 11. Wilks there argues that the puzzle posed by Mark Wicclair in Bioethics 5 against Dan Brock's argument in favour of a risk-related standard of competence -- namely that Brock's argument allows for situations of asymmetrical competence -- is not a genuine problem for a risk-related standard of competence. To show this, Wilks presents what he believes to be two examples of real situations in which asymmetrical competence arises. I argue that insofar as Wilks equivocates two senses of competence in his examples -- namely, competence to perform a task and competence in performing a task -- Wilks is unable to illustrate the existence of real situations of asymmetrical competence. By examining the way in which Wilks equivocates two senses of competence in his examples, and by applying the results of this examination to the problem of patient competency within the medical field, I argue that not only does Wilks fail to show that situations of asymmetrical competence exist, but he is also unable to provide a foundation for understanding how the risk-related standard of competence can strike a balance between an individual's autonomy and benevolent intervention. I thus conclude that insofar as Wilks fails to answer the objections raised by Wicclair and others against the risk-related standard of competence, the risk-related standard of competence continues to be undermined by the problem of asymmetrical competence.

The Question of Virginity Testing in Turkey

Abstract: Pre-marital sex for a woman is regarded as wrong in my country. As a result, it is socially forbidden for a woman to engage in this act. In order to present a woman as a virgin on her marriage day, she is subjected to pressure, and put under control both by her family and societal norms. However, a man is free and never made to suffer any of the above. A woman found to be a virgin on her first night of marriage is seen as a normal person while one suspected to have lost her virginity is made to undergo a series of medical examinations to bring clarity to her situation.

Globalisation or Westernisation? Ethical concerns in the whole bio-business.

Abstract: Increasing awareness of the importance of the biodiversity of the whole global biosphere has led to further awareness that the problems which arise in connection with preservation and exploitation of our planet’s biodiversity are best tackled from a global perspective. The ‘Biodiversity Convention’ and the ‘Human Genome Project’ are some of the concrete attempts at such globalisation. But, while these efforts are certainly very good at the intentional level and on paper, there is, at the practical level of implementation, the danger that globalisation may simply translate into westernisation, given the Western world’s dominance and will to dominate the rest of the globe. How is ‘global bioethics’ to be possible in a world inhabited by different cultural groups whose material situation, powers, ideas, experiences and attitudes differ rather markedly and who are not, in any case, equally represented in globalisation efforts and fora? One index of the pertinence of this question is that talk about biodiversity, biotechnology, biotrade etc. is being increasingly matched by talk about biopiracy, biorade, biocolonialism etc. In this paper, I attempt to explore and develop these very general concerns.

Bioethics in Brazil

Abstract: In this article the authors briefly sketch the nature of Brazilian bioethics. Bioethics emerged in Brazil later than in other Western countries and the 1990's were the most important period for the spread of the discipline in the country. It is in this period that some structural elements of bioethics were established, such as research groups, regulation of Local Research Ethics Committees (Comites Locais de Etica em Pesquisa -- CEP), the creation of the National Commission of Ethics in Research with Human Beings (Comissao Nacional de Etica em Pesquisa com Seres Humanos -- CONEP) and the Brazilian Bioethics Society (Sociedade Brasileira de Bioetica -- SBB). With regard to theoretical work, Brazilian bioethics is clearly an importer of theories from countries central to the studies of bioethics, or, in other words, countries where biothics first emerged and was established. The most commonly used theory among Brazilian researchers is principalism.

Desire-based and Value-based Nomative Reasons

Abstract: This paper is a response to John Harris’ provocative ‘Justice and Equal Opportunities in Health Care’. The aim of this short response is to locate the difference between Harris and me within a broader debate about the nature of reasons for action. I argue that Harris is appealing to a desire-based conception of normative reasons. I highlight some of the deficiencies of a desire-based conception of reasons, and contrast it with a value-based account.

Should We Undertake Genetic Research on Intelligence

Abstract: Although the concept of intelligence is difficult to define, research has provided evidence for a significant genetic component. Attempts are now being made to use molecular genetic approaches to identify genes contributing to intelligence, and to determine the ways in which they interact with environmental variables. This research is then likely to determine the developmental pathways of intelligence, in an effort to understand mental handicap and learning disorders and develop new treatment strategies. This paper reviews research on the genetic basis of intelligence, and discusses the ethical concerns, including the role of genetic information, the value we place on intelligence and the allocation of resources. It will be argued that the objections raised are problematic, and that because of the value of this knowledge and the prospect of improving lives, this research is morally required. We will then provide a brief analysis of the issues raised by enhancement of intelligence using genetic technology, and will argue that there is no intrinsic difference between this and other means of optimising intelligence.

Third trimester abortion for fetal abnormality.

Abstract: Developments in medical technology have increased the possibility of diagnosing severe structural abnormalties in the fetus. If these occur, a woman may request termination of her pregnancy. This raises serious ethical and legal questions, in particular if the anomalies are discovered in the third trimester when the fetus is considered viable. Should doctors be allowed to act upon a request for abortion in such a situation, and, if so, which safeguards should be in place? These questions are discussed with special reference to the Netherlands where a commission established by the government recently published a report on this matter.

Money Talks, Money Kills? – The Economics of Transplantation in Japan and China

Abstract: Japan and China have long resisted the Western trend of organ transplantation from brain-dead patients, based on a ‘Confucian’ respect for integrity of ancestors’ bodies. While their general publics continue to harbor grave doubts about such practices, their medical and political elites are hastening towards the road of organ-harvesting and organ-marketing, largely for economic reasons. This report illustrates the ways that economics is motivating brain-death legislation in Japan and criminal executions in China.

Understanding the 'conservative' view on abortion.

Abstract: The philosophical literature would have us believe that the conservative view on abortion is based on the claim that the fetus is a person from the time of conception. Given the widespread acceptance of this analysis, it comes as something of a surprise to learn that it conflicts with a number of major arguments offered in support of the conservative view. I argue, in the present paper, that a careful examination of these inconsistencies establishes that the personhood analysis is mistaken: the conservative view is based on the natural process of fetal development, not the personhood of the fetus.

The tasks of medicine: An ideology of care; edited by Peter Baume

Abstract: What do you do to start reading the tasks of medicine an ideology of care? Searching the book that you love to read first or find an interesting book that will make you want to read? Everybody has difference with their reason of reading a book. Actuary, reading habit must be from earlier. Many people may be love to read, but not a book. It's not fault. Someone will be bored to open the thick book with small words to read. In more, this is the real condition. So do happen probably with this the tasks of medicine an ideology of care.

Killing, letting die and moral perception: a reply to Grant Gillett.

Abstract: A number of philosophers in recent times have employed arguments to show that there is no morally relevant difference between killing a patient and allowing that patient to die in those circumstances where the outcome is virtually identical and where death is preventable, at least for a significant time. From his perspective as both a philosopher and a clinician, Grant Gillett has rejected such general and abstract arguments in the light of the intuitions and moral perceptions available to clinicians and those who care for the terminally ill. I argue that his strategy fails, is massively question-begging, and that his appeal to the notion of 'moral particularism', far from being an alternative to cogent philosophical argument, actually supports the very position he has attempted to discredit.