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.     

Bioethics for human geneticists: models for reasoning and methods for teaching.

The ethical issues raised by the Human Genome Project (HGP) and by human genetics in general are not entirely novel. In fact, the ethical issues surrounding genetic research and the provision of genetic services fit into the evolution of bioethics, a field of inquiry which has its roots in concerns of the 1970s, concerns about the dignity and self-determination of individuals and about the development of medical technologies. Although bioethics has been largely occupied with patient-centered concerns, attention is currently shifting toward socially oriented issues, such as the justice of the existing health-care system. Genetic counseling has already incorporated many of the lessons of early bioethics and, as a profession, adheres to a consultand-centered ethic which reflects the values incorporated into the doctrine of informed consent, which is a cornerstone of bioethics. The mandate of the Ethical, Legal, and Social Implications Program of the HGP--to anticipate ethical problems arising from advances in genetics and to educate the public about genetics--reflects not only the nonpaternalistic approach of early bioethics but also bioethics' increasing attention to the ethical import of systemic and institutional factors, as well as an anticipatory and preventive approach to dealing with ethical concerns. Because bioethics has so much to contribute to current consideration of ethical issues in human genetics, it is important to provide training in ethics to those working in the field. Guidelines for using a case-oriented approach are suggested.     

Lessons from Queer Bioethics: A Response to Timothy F. Murphy

‘Bioethics still has important work to do in helping to secure status equality for LGBT people’ writes Timothy F. Murphy in a recent Bioethics editorial. The focus of his piece, however, is much narrower than human rights, medical care for LGBT people, or ending the HIV/AIDS pandemic. Rather, he is primarily concerned with sexuality and gender identity, and the medical intersections thereof (i.e. DSM diagnosis; access to SrS or ARTs). It is the objective of this response to provide an alternate account of bioethics from a Queer perspective. I will situate Queer bioethics within Queer studies, and offer three ‘lessons’ that bioethics can derive from this perspective. These are not definitive rules for Queer bioethics, since it is a field which fundamentally opposes categorizations, favoring pastiche over principles. These lessons are exploratory examples, which both complement and contradict LGBT bioethics. My latter two lessons – on environmental bioethics and disability – overlap with some of Murphy's concerns, as well as other conceptions of LGBT bioethics. However, the first lesson takes an antithetical stance to Murphy's primary focus by resisting all forms of heteroconformity and disavowing reproduction as consonant with Queer objectives and theory. The first lesson, which doubles as a primer in Queer theory, does heavy philosophical lifting for the remainder of the essay. This response to Timothy F. Murphy, whose work is certainly a legacy in bioethics, reveals the multiplicity of discourses in LGBT/Queer studies, many of which are advantageous – even essential – to other disciplines like bioethics.     

Aspects réglementaires et organisationnels de l’activité d’autoconservation. Le point de vue du juriste

At the present time, legal texts in application of bioethics laws only briefly mention cryopreservation. The conditions of cryopreservation differ according to the type of tissue stored: while cryopreservation of oocytes and ovarian tissue corresponds to the field of biomedical research, semen cryopreservation corresponds to medically assisted procreation. Cryopreservation activity is more clearly defined in the draft revision of the bioethics law. Concerning the cryoconservation of ovarian tissue and oocytes, these difficulties result in particular in this activity’s mixed nature. It is located indeed, halfway between research and care. These two spheres of medical activity are subjected to their own distinct and exclusive, and their application is conditioned by the qualification of the implemented act. However, this qualification is dubious here, because of, in particular, the impossibility of determining which acts of sampling, cryoconservation and use might be concerned with a research protocol. Concerning the cryoconservation of sperm, the texts, first of all, seem to assimilate the activity of cryoconservation within an activity of assisted medical procreation. However, such assimilation would be equivalent to the impossibility of its implementation, because of the difficulty of respecting all of the legal conditions of assisted medical procreation. However, another more favourable interpretation of the provisions seems to be possible. Taking into consideration these uncertainties, contradictions and difficulties, the legislator intervened and devoted, by the widening of the indications of assisted medical procreation, the activity of cryoconservation in the project of revision of the laws of bioethics. He however did not solve all the difficulties. These cryoconserved elements can be restored only to the depositor. Indeed, the texts make obstacle to a delivery for a third party of the cryoconserved sperm, whatever the moment. They can also be used. This use can consist of assisted medical procreation, which is the first finality of cryoconservation — but it could only be implemented in respect of the whole of the legal conditions. It seems that the cryoconserved elements could also be used within the framework of research, whatever its nature (biomedical or not) and the moment of its implementation (while the person is alive or after his death). Its implementation should however be subjected to prior agreement and expressed while the person, whose elements were preserved, is alive. Such a use is expressly made possible in the project of revision of the laws of bioethics. Following a partial use or a lack of such a use, the destruction of the cryoconserved elements can be considered, as well as the continuation of the cryoconservation. However, these hypotheses raise difficulties that have not yet been resolved in the draft revision of the bioethics law.     

When Listening to the People: Lessons from Complementary and Alternative Medicine (CAM) for Bioethics

Complementary and alternative medicines (CAM) have become increasingly popular over recent decades. Within bioethics CAM has so far mostly stimulated discussions around their level of scientific evidence, or along the standard concerns of bioethics. To gain an understanding as to why CAM is so successful and what the CAM success means for health care ethics, this paper explores empirical research studies on users of CAM and the reasons for their choice. It emerges that there is a close connection to fundamental principles of medical ethics. The studies also highlight that CAM’s holistic ontology of health and illness has an empowering effect on people in caring for their health, and on an even deeper level, safeguards against biomedicine’s reducing image of oneself as biological body-machine. The question is raised what lessons bioethics should draw from this emancipatory social movement for its own relationship with biomedicine.     

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.     

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.     

In the shadow of "death with dignity": medicine and cultural quandaries of the vegetative state

In this paper I address one site of technological development and cultural production, the permanent or persistent comatose condition and the institutions and practices that enable this life form to exist. As with other medical sites of ambiguity and change under recent scrutiny by anthropologists, the locations in which comatose bodies thrive are those in which the routinization of technology use in the clinic and a legitimating social and economic context come together to permit and create a further remapping of the notions of "life" and "person." I explore the new forms of knowledge, practice, and the body that are created at this site and how they are negotiated, and I discuss how the shifting understanding of "'culture" and "nature" both have an impact on and are informed by American quandaries about approaching death. I argue that beings who are neither fully alive, biologically dead, nor "naturally" self-regulating, yet who are sustained by modern medical practices, destabilize the existing social order in ways that are different from other hybrid forms, [medical anthropology, anthropology of the body, bioethics, personhood, culture/nature dichotomy]     

Health,illness, and immigration. East Indians in the United States.

East Indian immigrants to the United States represent the diversity in religion, language, and culture that exists in India, so it is difficult to make unequivocal statements about their health beliefs and behaviors. Despite the diversity, an understanding of Ayurvedic humoral concepts of health and illness provides a key to some pervasive and persistent ideas and practices. India has a pluralistic medical system in which Western medicine, which is increasingly popular for some ailments, is one option among many. Even those who are familiar with the "Western" medical system in India may find American medicine alien.     

Medical malpractice in perspective. I--The American experience.

Concern over the possibility of an American style medical malpractice "crisis" in the United Kingdom has recently been voiced by members of both medical and legal professions. The validity of such fears is examined by reviewing the conditions that have given rise to the current American difficulties. It is argued that the rise in malpractice insurance premiums and associated restrictions in availability should be seen against the background of underwriting problems specific to medical liability in conjunction with a general decline in reinsurance cover. The evidence in relation to the clinical and resource implications of malpractice is analysed. In particular, arguments that increased litigation has influenced the practice of "defensive" medicine and the choice of specialty are critically examined. Medical malpractice claims and insurance are only part of a professional environment which is undergoing dramatic social and economic changes, many of which seem more plausible candidates to be treated as important influences on the nature and organisation of health care in the United States.     

A method of Reflexive Balancing in a Pragmatic,Interdisciplinary and Reflexive Bioethics

In recent years there has been a wealth of literature arguing the need for empirical and interdisciplinary approaches to bioethics, based on the premise that an empirically informed ethical analysis is more grounded, contextually sensitive and therefore more relevant to clinical practice than an ‘abstract’ philosophical analysis. Bioethics has (arguably) always been an interdisciplinary field, and the rise of ‘empirical’ (bio)ethics need not be seen as an attempt to give a new name to the longstanding practice of interdisciplinary collaboration, but can perhaps best be understood as a substantive attempt to engage with the nature of that interdisciplinarity and to articulate the relationship between the many different disciplines (some of them empirical) that contribute to the field. It can also be described as an endeavour to explain how different disciplinary approaches can be integrated to effectively answer normative questions in bioethics, and fundamental to that endeavour is the need to think about how a robust methodology can be articulated that successfully marries apparently divergent epistemological and metaethical perspectives with method. This paper proposes ‘Reflexive Bioethics’ (RB) as a methodology for interdisciplinary and empirical bioethics, which utilizes a method of ‘Reflexive Balancing’ (RBL). RBL has been developed in response to criticisms of various forms of reflective equilibrium, and is built upon a pragmatic characterization of Bioethics and a ‘quasi‐moral foundationalism’, which allows RBL to avoid some of the difficulties associated with RE and yet retain the flexible egalitarianism that makes it intuitively appealing to many.     

To strengthen consensus, consult the stakeholders

CIOMS has been criticised for not adequately consulting stakeholders about its revised ethical guidelines regarding medical research. Political and logistical issues that arise in democratic processes and open exchange of information probably contributed to this exclusion. What might CIOMS have done to be more inclusive and attain broader consensus on its proposed revisions? Consensus is dynamic, and evolves as a community digests new information and perspectives. Engaging the public (and particularly the stakeholders) in discussion about the revisions would have generated broader consensus. It would have encouraged more stakeholders (i.e. researchers, potential research participants, research institutions, or governments) to buy in. CIOMS needs a process to encourage dialogue and stakeholder input. The CIOMS guidelines themselves promote stakeholder consultation and capacity building, but CIOMS has done relatively little to distribute or promote its own guidelines. CIOMS should do more to promote its revised guidelines, and engage stakeholders in dialogue. This paper explores the bioethics debate about universal and relative values to illustrate the value of consultation and consensus building. It concludes that like research sponsors, CIOMS and similar organisations have an ethical responsibility to facilitate capacity building in less developed areas, and to participate more actively in consensus building.     

An appraisal of the American and British health-care systems.

1. A dispassionate comparison of the British and American systems of medical care using conventional guidelines (structure, process, and outcomes) as applied to acknowledged national problems in health and medical care (expense, quality, and distribution) has been made. 2. Dissimilarities in the size of the countries, in the attitudes of physicians, and in homogeneity of populations make it unlikely that the two countries should have identical medical-care systems. 3. The "good features" of the NHS, which by implication might benefit the American system if adopted, are seen to be overshadowed by weakness: a) Relative expensiveness or extravagance of American medicine is seen as underfinancing of the British system. b) Quality of care in Britain is threatened by lack of professional stimulation of generalists, inadequate facilities, and rationing of medical care by prolonged waiting times for elective services. c) Distribution of services is a problem in both countries which will not be corrected by administrative controls but "pegged to incentives" as is true in America. 4. Administrative change in NHS in April 1974 is evidence of internal dissatisfaction. It also demonstrates the need for continual revision of the system; a similar need is made evident by recent legislative proposals in America. 5. Dr. Beeson's final recommendation for voluntary organizational effort by the profession in America has merit.     

The Invisibility of Disability: Using Dance to Shake from Bioethics the Idea of ‘Broken Bodies’

Complex social and ethical problems are often most effectively solved by engaging them at the messy and uncomfortable intersections of disciplines and practices, a notion that grounds the InVisible Difference project, which seeks to extend thinking and alter practice around the making, status, ownership, and value of work by contemporary dance choreographers by examining choreographic work through the lenses of law, bioethics, dance scholarship, and the practice of dance by differently‐abled dancers. This article offers a critical thesis on how bioethics has come to occupy a marginal and marginalizing role in questions about the differently‐abled body. In doing so, it has rendered the disabled community largely invisible to and in bioethics. It then defends the claim that bioethics – as a social undertaking pursued collaboratively by individuals from different disciplines – must take much better notice of the body and the embodied individual if it is to better achieve its ends, which include constructing a moral and just society. Finally, this article considers how the arts, and specifically dance (and here dance by differently‐abled dancers), provides us with rich evidence about the body and our ability to respond positively to normally ‘othered’ bodies. It concludes that greater attention to empirical evidence like that being generated in InVisible Difference will help to expand the reach and significance of bioethics, and thereby its relevance to (and consciousness of) important questions about the status of bodies and bodily differences, which must be considered as central to its ambitions.     

Conceptualizing "religion": How language shapes and constrains knowledge in the study of religion and health

Despite recent advances in the field of religion and health, meaningful findings will increasingly depend on the capacity to conceptualize "religion" properly. To date, scientists' conception of religion has been shaped by the Enlightenment paradigm. However, recent developments in philosophy make the "objectivity" of the Enlightenment paradigm problematic, if not untenable. Contrary to common understanding, the secularism essential to the Enlightenment paradigm does not enjoy any special privilege over religious ways of seeing the world, because both religious and secular worldviews constitute self-referentially complete interpretations of the human condition. If there is no objective frame of reference from which to measure religiousness, then the study of religion and health is fundamentally contingent on the specific languages and contexts in which particular religions find expression. While applying this cultural-linguistic approach to religion would require significant changes in the existing methods for studying religion and health, such changes may generate a deeper understanding of this relationship.     

African Bioethics vs. Healthcare Ethics in Africa: A Critique of Godfrey Tangwa

It is nearly two decades now since the publication of Godfrey Tangwa's article, ‘Bioethics: African Perspective’, without a critical review. His article is important because sequel to its publication in Bioethics, the idea of ‘African bioethics’ started gaining some attention in the international bioethics literature. This paper breaks this relative silence by critically examining Tangwa's claim on the existence of African bioethics. Employing conceptual and critical methods, this paper argues that Tangwa's account of African bioethics has some conceptual, methodic and substantive difficulties, which altogether do not justify the idea of African bioethics, at least for now. Contra Tangwa, this article establishes that while African bioethics remains a future possibility, it is more cogent that current efforts in the name of ‘African bioethics’ be primarily re‐intensified towards ‘Healthcare ethics in Africa’.     

The birth of the empirical turn in bioethics

Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence in bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of bioethics. Thirdly, the meta-ethical distinction between 'is' and 'ought' created a 'natural' border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence-based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared.     

Relational autonomy,care, and Jehovah's Witnesses in Germany

Drawing from an ethics of care, relational approaches to autonomy have recently emerged in bioethics. Unlike individual autonomy with its emphasis on patients’ rights, choice, and self‐determination which has been the hallmark of bioethics consistent with the ideology of individualism in neoliberal democracies in Western countries, relational autonomy highlights the relatedness, interdependency, and social embeddedness of patients. By examining the mediating role that male Hospital Liaison Committee members in Germany play in facilitating care that supports Jehovah's Witnesses’ refusal of blood transfusions, this article moves beyond ‘dyadic relations’ and contexts of caregiving. It also contributes to a deeper understanding of care and relational conceptualizations of Witness patients’ autonomy globally.     

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.     

Research ethics and the use of placebo: status of the debate in Canada

The question of the use of the placebo is one of the most controversial in the field of the ethics of research today. The use of the placebo remains the standard practice of biomedical research in spite of the fact that various revisions of the Helsinki Declaration have sought to limit its use. In Canada, the Tri-council policy statement: Ethical conduct for research involving humans adopted a very restrictive position with respect to the use of placebos, precisely defining the situations in which its use would meet the demands of ethical research. The positions taken by the various ethical decision-making bodies are, however, hardly shared by regulatory bodies such as the Food and drug administration (FDA), the Council for international organization of medical sciences (CIOMS) or the European agency for the evaluation of medicinal products (EMEA). This divergence of opinions reveals two quite different conceptions of what constitutes the ethical. In the case of decision-making bodies in the ethical field, it is clearly medicine's Hippocratic Oath which explains their reluctance to use placebos. The first responsibility of the doctor is to "do no harm" to his or her patient. This duty is inherent to the medical profession and as such is not grounded in the view of medicine as a contract for care. In the case of regulatory bodies, it is the vision of "medicine as contract" which is in view; and it is this notion that justifies the use of placebos once free and informed consent has been obtained. It is also worth noting that these regulatory bodies make frequent use of arguments based on utilitarian ends. In an unprecedented move, the World medical association published in October 2001 a clarification note about the use of placebos. An analysis of this text raises the question about its real meaning: clarification or concession?