Patient-Centred Care: Qualitative Findings on Health Professionals’ Understanding of Ethics in Acute Medicine

In recent years the literature on bioethics has begun to pose the sociological challenge of how to explore organisational processes that facilitate a systemic response to ethical concerns. The present discussion seeks to make a contribution to this important new direction in ethical research by presenting findings from an Australian pilot study. The research was initiated by the Clinical Ethics Committee of Redland Hospital at Bayside Health Service District in Queensland, Australia, and explores health professionals’ understanding of the nature of ethics and their experience with ethical decision-making within an acute medical ward. This study focuses on the actual experience, understanding and attitudes of clinical professionals in a general medical ward. In particular, the discussion explores the specific findings from the study concerned with how a multi-disciplinary team of health professionals define and operationalise the notion of ethics in an acute ward hospital setting. The key issue reported is that health professionals are not only able to clearly articulate notions of ethics, but that the notions expressed by a multi-disciplinary diversity of participants share a common definitional concept of ethics as patient-centred care. The central finding is that all professional groups indicated that there is a guiding principle to address their ethical sense of the ‘good’ or the ‘ought’ and that is to act in a way that furthered the interests of patients and their families. The findings affirm the importance of a sociological perspective as a productive new direction in bioethical research.     

Religion and Bioethics: Can We Talk?

Religious voices were important in the early days of the contemporary field of bioethics but have now become decidedly less prominent. This is unfortunate because religious elements are essential parts of the most foundational aspects of bioethics. The problem is that there is an incommensurability between religious language and languages of public discourse such as the “public reason” of John Rawls. To eliminate what is unique in religious language is to lose something essential. This paper examines the reasons for the marginalization of religion in bioethics, shows the limitations of Rawls’s notion of public reason, and argues for a more robust role for theology in articulating a new language for public discourse in bioethics.     

Anthropological and Sociological Critiques of Bioethics

Anthropologists and sociologists offer numerous critiques of bioethics. Social scientists criticize bioethicists for their arm-chair philosophizing and socially ungrounded pontificating, offering philosophical abstractions in response to particular instances of suffering, making all-encompassing universalistic claims that fail to acknowledge cultural differences, fostering individualism and neglecting the importance of families and communities, and insinuating themselves within the “belly” of biomedicine. Although numerous aspects of bioethics warrant critique and reform, all too frequently social scientists offer ungrounded, exaggerated criticisms of bioethics. Anthropological and sociological critiques of bioethics are hampered by the tendency to equate bioethics with clinical ethics and moral theory in bioethics with principlist bioethics. Also, social scientists neglect the role of bioethicists in addressing organizational ethics and other “macro-social” concerns. If anthropologists and sociologists want to provide informed critiques of bioethics they need to draw upon research methods from their own fields and develop richer, more informed analyses of what bioethicists say and do in particular social settings.     

NEW DIRECTIONS IN AFRICAN BIOETHICS: WAYS OF INCLUDING PUBLIC HEALTH CONCERNS IN THE BIOETHICS AGENDA

Research ethics is the most developed aspect of bioethics in Africa. Most African countries have set up Institutional Review Boards (IRBs) to provide guidelines for research and to comply with international norms. However, bioethics has not been responsive to local needs and values in the rest of the continent. A new direction is needed in African bioethics. This new direction promotes the development of a locally‐grounded bioethics, shaped by a dynamic understanding of local cultures and informed by structural and institutional problems that impact the public's health, as well as cognisant of the salient contribution of social sciences and social epidemiology which can bring a lasting impact on African local communities. In today's post‐Structural Adjustment Africa, where healthcare has been liberalized and its cost increased, a bioethics agenda that focuses essentially on disease management and clinical work remains blind in the face of a structural marginalization of the masses of poor. Instead, the multidimensional public health crisis, with which most African countries are confronted, calls for a bioethics agenda that focuses primarily, but not exclusively, on health promotion and advocacy. Such an approach to bioethics reckons with the macro‐determinants of health and well‐being and places clinical and research ethics in the broader context of population's health. The same approach underscores the need to become political, not only by addressing health policymaking processes and procedures, but also by becoming an advocacy forum that includes other constituencies equipped with the potentialities to impact the population's health.     

The genesis of public health ethics

As bioethics emerged in the 1960s and 1970s and began to have enormous impacts on the practice of medicine and research – fuelled, by broad socio‐political changes that gave rise to the struggle of women, African Americans, gay men and lesbians, and the antiauthoritarian impulse that characterised the New Left in democratic capitalist societies – little attention was given to the question of the ethics of public health. This was all the more striking since the core values and practices of public health, often entailing the subordination of the individual for the common good, seemed opposed to the ideological impulses of bioethics. Of what relevance is autonomy‐focused bioethics for public health, with its mix of justifications including those that are either implicitly or explicitly paternalistic or that seek to impose strictures on individuals and communities in the name of collective welfare? To examine the deep divide between the central commitments of bioethics and the values that animate the practice of public health, we focus on a series of controversies implicating the concepts of privacy, liberty, and paternalism. Recognising the role of moral values in decision‐making was a signal contribution of bioethics in its formative period. Over the past three decades a broad array of perspectives emerged under the rubric of bioethics but individualism remains central. As we commence the process of shaping an ethics of public health, it is clear that bioethics is the wrong place to start when thinking about the balances required in defence of the public's health.     

Enriching Our Views on Clinical Ethics: Results of a Qualitative Study of the Moral Psychology of Healthcare Ethics Committee Members

The contribution of healthcare ethics committee (HEC) members to HECs is fundamental. However, little is known about how HEC members view clinical ethics. We report results from a qualitative study of the moral psychology of HEC members. We found that contrary to the existing Kohlberg-based studies, HEC members hold a pragmatic non-expert view of clinical ethics based mainly on respect for persons and a commitment to the patient’s good. In general, HEC members hold deflationary views regarding moral theory. Ethical principles are not abstract foundations but the expression of moral commitments to patients that pre-exist awareness of moral theory. Emotions and proximity to patient sufferance fundamentally shape the views of HEC members on clinical ethics. Further work at the intersection of clinical ethics and qualitative research could bring to the foreground lay perspectives on moral problems that may differ from bioethics expert views.     

Questionable Gate-keeping: Scientific Evidence for Complementary and Alternative Medicines (CAM): Response to Malcolm Parker

The more popular complementary and alternative medicine (CAM) has become, the more often it is demanded that the integration of CAM should be limited to those approaches that are scientifically proven to be effective. This paper argues that this demand is ethically and philosophically questionable. The clinical legitimacy being gained by CAM and its increasing informal integration should instead caution against upholding the biomedical framework and evidence-based medicine as conditions of acceptance. Patients’ positive experiences with CAM deserve a truly scientific exploration of non-biomedical conceptualizations of health and illness. It is also problematic to request scientific evidence when there is proven resistance against CAM in research institutions, under-funding and a lack of suitable research methodologies. This is even more so, when much conventional medicine is not practiced with the same level of evidence as demanded from CAM.     

For an ethics of promising, or: a few kind words about James Watson

This essay questions some of the limits that both science studies and bioethics have assumed in their engagements with technoscience, and genomics in particular. It argues that these disciplines have privileged an "ethics of suspicion" regarding technoscience, and argues that this is ill-suited to promissory sciences such as genomics. The essay begins to develop elements of an "ethics of friendship" toward genomics, using examples from toxicogenomics and behavioral genetics, to suggest what an ethics of promising might involve.     

Was bioethics founded on historical and conceptual mistakes about medical paternalism?

Bioethics has a founding story in which medical paternalism, the interference with the autonomy of patients for their own clinical benefit, was an accepted ethical norm in the history of Western medical ethics and was widespread in clinical practice until bioethics changed the ethical norms and practice of medicine. In this paper I show that the founding story of bioethics misreads major texts in the history of Western medical ethics. I also show that a major source for empirical claims about the widespread practice of medical paternalism has been misread. I then show that that bioethics based on its founding story deprofessionalizes medical ethics. The result leaves the sick exposed to the predatory power of medical practitioners and healthcare organizations with only their autonomy-based rights to non-interference, expressed in contracts, to protect them. The sick are stripped of the protection afforded by a professional, fiduciary relationship of physicians to their patients. Bioethics based on its founding story reverts to the older model of a contractual relationship between the sick and medical practitioners not worthy of intellectual or moral trust (because such trust cannot be generated by what I call 'deprofessionalizing bioethics'). On closer examination, bioethics based on its founding story, ironically, eliminates paternalism as a moral category in bioethics, thus causing bioethics to collapse on itself because it denies one of the necessary conditions for medical paternalism. Bioethics based on its founding story should be abandoned.     

什么是生命伦理学？——从历史发展的视角

生命伦理学是20世纪60年代兴起于美国的一门新兴学科,旨在应对生命科学和生物技术的发展或医疗保健的演变使人类面临的种种伦理难题。生命伦理学的兴起有着特殊的社会历史背景。它在发展过程中出现的一些里程碑式的案例,对生命伦理学的发展产生了深远的影响。从其发展特征上看,生命伦理学和医学伦理学紧密联系,有着更为广泛的研究内容和独特的专业特性。生命伦理学要有效回应现代医学和生命科学的发展给人类带来的伦理难题,既要准确地界定伦理问题,又要以适当的方式将伦理学基础理论应用到具体问题当中。对生命伦理学的基本理论进行概述。     

Guidelines for Community-based Ethics Review of Children’s Science Fair Projects

Low-level community based ethics committees staffed by teachers, parents and community representatives can readily review children’s science fair projects subject to the revision of two core assumptions currently governing children’s Science Fairs. The first part of the paper recasts the New Zealand Royal Society guidelines from its primary emphasis on risk to a new assumption, without benefit there can be no risk. Equally, this revision gives more prominence to the participant information sheet, allowing it to act as a quasi application form which provides ethical transparency between student researchers, participants and a community based ethics committee. A second core assumption, more accurately labeled a cult of originality, produces a random, open-ended array of student topics taking ethics review beyond the confidence level of most community based ethics review committees. This paper reins in Science Fair coordinators recommending they make community level ethics review more manageable by providing a list of preapproved topics for those students wanting to conduct research involving human participants. These revised assumptions create a workable division of labour. Teachers’ preapproved topics involving human participants are more likely to be low risk, permitting community level ethics review to focus primarily on two aspects of the minimization of harm: first, for all participants, especially those with diminished autonomy, and second, for the child researchers themselves, as some participants may be unknown to the student. These revised assumptions make science and ethics more accessible to public education thus demonstrating how Science Fairs can lead students and the community into better understanding the role and function that ethics has in all scientific research human participants. Martin Tolich chaired New Zealand’s National Health Ethics committee, the multi-region ethics committee.     

Research ethics capacity development in Africa: exploring a model for individual success

The Johns Hopkins-Fogarty African Bioethics Training Program (FABTP) has offered a fully-funded, one-year, non-degree training opportunity in research ethics to health professionals, ethics committee members, scholars, journalists and scientists from countries across sub-Saharan Africa. In the first 9 years of operation, 28 trainees from 13 African countries have trained with FABTP. Any capacity building investment requires periodic critical evaluation of the impact that training dollars produce. In this paper we describe and evaluate FABTP and the efforts of its trainees. Our data show that since 2001, the 28 former FABTP trainees have authored or co-authored 105 new bioethics-related publications; were awarded 33 bioethics-related grants; played key roles on 78 bioethics-related research studies; and participated in 198 bioethics workshops or conferences. Over the past nine years, trainees have collectively taught 48 separate courses related to bioethics and have given 170 presentations on various topics in the field. Many former trainees have pursued and completed doctoral degrees in bioethics; some have become editorial board members for bioethics journals. Female trainees were, on average, less experienced at matriculation and produced fewer post-training outputs than their male counterparts. More comprehensive studies are needed to determine the relationships between age, sex, previous experience and training program outputs.     

The Ethics of Research on Less Expensive,Less Effective Interventions: A Case for Analysis

The Kennedy Krieger lead paint study is a landmark case in human experimentation and a classic case in research ethics. In this paper I use the lead paint study to assist in the analysis of the ethics of research on less expensive, less effective interventions. I critically evaluate an argument by Buchanan and Miller who defend both the Kennedy Krieger lead paint study and public health research on less expensive, less effective interventions. I conclude that Buchanan and Miller’s argument is flawed but that does not mean that research designed to find less effective interventions cannot be justified in some situations. Based on my analysis, I suggest questions to ask when considering such research and I offer some principles to guide us. In the process, light is shed on the various debates and issues raised by the lead paint study; e.g. standards of care, researchers’ responsibilities to research subjects, the distinction between treatment and research and the question of what it is that legitimizes public health research. Merle Spriggs is supported by a grant from the Alfred Felton Bequest which is managed by ANZ Trustees.     

Challenges of Macro-ethics: Bioethics and the Transformation of Knowledge Production

One interesting aspect of the Hwang-case has been the way in which this affair was assessed by academic journals such as Nature. Initially, Hwang’s success was regarded as evidence for the detrimental effects of research ethics, slowing down the pace of research in Western countries. Eventually, however, Hwang’s debacle was seen as evidence for the importance of ethics in the life sciences. Ironically, it was concluded that the West maintains its prominence in science (as a global endeavour) precisely because it has its ethics in place. Bioethics was now seen as an indispensable part of quality control. In this article, I will claim that the Hwang case rather reveals that there is no reason for complacency and that there are substantial challenges awaiting us. They have to do with major transformations in the way knowledge is produced and research in the life sciences is conducted (such as the increase in pace and scale, globalisation and the growing importance of ICT and bioinformation). These transformations call for a different kind of bioethics. The focus must shift from duties of autonomous researchers concerning visible research subjects (“micro-ethics”) to responsibilities of institutionalised research networks in managing and processing large amounts of bioinformation (“macro-ethics”). Concepts such as transparency, reliability and benefit-sharing will become more important than concepts such as informed consent. Basically, it is a resurgence of the tension between the Kantian and the Hegelian view of ethics. The contours of macro-ethics will be elaborated notably as it is emerging in bioethical debates over biobanking and genetic databanks.

THE FUTURE OF BIOETHICS: THREE DOGMAS AND A CUP OF HEMLOCK

In this paper I argue that bioethics is in crisis and that it will not have a future unless it begins to embrace a more Socratic approach to its leading assumptions. The absence of a critical and sceptical spirit has resulted in little more than a dominant ideology. I focus on three key issues. First, that too often bioethics collapses into medical ethics. Second, that medical ethics itself is beset by a lack of self‐reflection that I characterize here as a commitment to three dogmas. Third, I offer a more positive perspective by suggesting how bioethics may benefit from looking towards public health ethics as a new source of inspiration and direction.     

PRIVACY, THE INDIVIDUAL AND GENETIC INFORMATION: A BUDDHIST PERSPECTIVE

Bioinformatics is a new field of study whose ethical implications involve a combination of bioethics, computer ethics and information ethics. This paper is an attempt to view some of these implications from the perspective of Buddhism. Privacy is a central concern in both computer/information ethics and bioethics, and with information technology being increasingly utilized to process biological and genetic data, the issue has become even more pronounced. Traditionally, privacy presupposes the individual self but as Buddhism does away with the ultimate conception of an individual self, it has to find a way to analyse and justify privacy that does not presuppose such a self. It does this through a pragmatic conception that does not depend on a positing of the substantial self, which is then found to be unnecessary for an effective protection of privacy. As it may be possible one day to link genetic data to individuals, the Buddhist conception perhaps offers a more flexible approach, as what is considered to be integral to an individual person is not fixed in objectivity but depends on convention.     

Some Observations upon Biochemical Causes of Ataxia and a New Disease Entity Ubiquinone, CoQ10 Deficiency

Some hereditary ataxias are treatable and the insight required for this has come from an in depth knowledge of the phenotypes and clinical biochemistry of the conditions. This has required both fundamental and translational clinical research. Prof John Blass was fortunate to begin his career at what we can now recognise as a golden era for such studies and he worked upon two important conditions; Refsum’s disease and Friedreich’s ataxia. More recently the mitochondrial encephalomyopathies have been described and similar investigative work has been undertaken upon them. Ubiquinone, CoQ₁₀, deficiency is the most recently recognised encephalomyopathy and is itself treatable. Though rare, it is becoming increasingly recognised and patients are benefiting from the same scholarly approach to its’ investigation as was afforded Refsums’ disease and Friedreich’s ataxia. A dedication to Professor John P. Blass.     

Is there a Real Nexus Between Ethics and Aesthetics?

Aesthetics is a vexed topic in philosophy, with a long history. For my purposes, an aesthetic experience is a foundational affective response to an object, to which terms such as “ugly”, “beautiful”, “pretty” or “harmonious” are applied. These terms are derived from a Discourse of aesthetics; some remain constant, others change from generation to generation. Aesthetics and ethics have been linked in Western thought since the days of Plato and Aristotle. This essay examines what is happening to that link in contemporary experience. It emphasises the ways in which the popular media exploit aesthetic appeal to penetrate their market, and to exploit and frame intuitive responses to current and past events. Production values, the artfulness of editors and the financial interests of producers and directors thus do much to determine contemporary aesthetic and ethical judgements. That which is beautifully presented invites the ethical involvement of the audience. Events whose images are beautifully presented constitute “hyperevidence”, a pre-judged, reinforced and amplified illusion of reality and participation. Understanding how aesthetic excellence draws audiences into ethical relationship with what is presented becomes an important part of education in ethics, including bioethics.     

Public health ethics: asylum seekers and the case for political action

This paper is a case study in public health ethics. It considers whether there is a basis in ethics for political action by health professionals and their associations in response to inhumane treatment. The issue arises from Australia's treatment of asylum seekers and the charge that this treatment has been both immoral and inhumane. This judgement raises several questions of broader significance in bioethics and of significance to the emerging field of public health ethics. These questions relate to the role of health professionals in response to inhumane treatment of people in their charge; to the discipline of public health in light of a growing recognition of its ethical basis; and the role of public health and bioethical associations in response to ethical issues arising in a political context. It is argued that, in serious cases of humanitarian and human rights abuses affecting health and well-being, there is a case for political action by health professionals, academic and professional institutions, and associations of public health and ethics.     

Darwin and His Pigeons. The Analogy Between Artificial and Natural Selection Revisited

The analogy between artificial selection of domestic varieties and natural selection in nature was a vital element of Darwin’s argument in his Origin of Species. Ever since, the image of breeders creating new varieties by artificial selection has served as a convincing illustration of how the theory works. In this paper I argue that we need to reconsider our understanding of Darwin’s analogy. Contrary to what is often assumed, nineteenth-century animal breeding practices constituted a highly controversial field that was fraught with difficulties. It was only with considerable effort that Darwin forged his analogy, and he only succeeded by downplaying the importance of two other breeding techniques – crossing of varieties and inbreeding – that many breeders deemed essential to obtain new varieties. Part of the explanation for Darwin’s gloss on breeding practices, I shall argue, was that the methods of his main informants, the breeders of fancy pigeons, were not representative of what went on in the breeding world at large. Darwin seems to have been eager to take the pigeon fanciers at their word, however, as it was only their methods that provided him with the perfect analogy with natural selection. Thus while his studies of domestic varieties were important for the development of the concept of natural selection, the reverse was also true: Darwin’s comprehension of breeding practices was moulded by his understanding of the working of natural selection in nature. Historical studies of domestic breeding practices in the eighteenth and nineteenth century confirm that, besides selection, the techniques of inbreeding and crossing were much more important than Darwin’s interpretation allowed for. And they still are today. This calls for a reconsideration of the pedagogic use of Darwin’s analogy too.