INTER‐ETHICS: TOWARDS AN INTERACTIVE AND INTERDEPENDENT BIOETHICS

Since its origin bioethics has been a specialized, academic discipline, focussing on moral issues, using a vast set of globalized principles and rational techniques to evaluate and guide healthcare practices. With the emergence of a plural society, the loss of faith in experts and authorities and the decline of overarching grand narratives and shared moralities, a new approach to bioethics is needed. This approach implies a shift from an external critique of practices towards embedded ethics and interactive practice improvement, and from a legal defence of rights towards fostering interdependent practices of responsibility. This article describes these transitions within bioethics in relation to the broader societal and cultural dynamics within Western societies, and traces the implications for the methodologies and changing roles of the bioethicist. The bioethicist we foresee is not just a clever expert but also a relationally sensitive person who engages stakeholders in reciprocal dialogues about their practice of responsibility and helps to integrate various sorts of knowledge (embodied, experiential, visual, and cognitive‐scientific). In order to illustrate this new approach, we present a case study. It concerns a project focusing on an innovation in elderly care, based on the participation of various stakeholders, especially older people themselves.     

The Nature and Value of Bioethics Expertise

In this article, I address the extent to which experts in bioethics can contribute to healthcare delivery by way of aid in clinical decision‐making and policy‐formation. I argue that experts in bioethics are moral experts, in that their substantive moral views are more likely to be correct than those of non‐bioethicists, all else being equal, but that such expertise is of use in a relatively limited class of cases. In so doing, I respond to two recent arguments against the view that bioethicists are moral experts, one by Christopher Cowley and another by David Archard. I further argue that bioethics experts have significant additional contributions to make to healthcare delivery, and highlight a hitherto neglected aspect of that contribution: amelioration of moral misconception among clinicians. I describe in detail several aspects of moral misconception, and show how the bioethicist is in a prime position to resolve that sort of error.     

Medicine for the City: Perspective and Solidarity as Tools for Making Urban Health

The United States has pursued policies of urban upheaval that have undermined social organization, dispersed people, particularly African Americans, and increased rates of disease and disorder. Healthcare institutions have been, and can be, a part of this problem or a part of the solution. This essay addresses two tools that healthcare providers can use to repair the urban ecosystem—perspective and solidarity. Perspective addresses both our ability to envision solutions and our ability to see in the space in which we move. Solidarity is our ability to appreciate our fellowship with other people, a mindset that is at the heart of medical practice. These two tools lay the foundation for structurally competent healthcare providers to act in a restorative manner to create a health-giving built environment.     

Looking backwards, looking forward: hopes for bioethics' next twenty-five years

I reflect on the past, present, and future of the field of bioethics. In so doing, I offer a very situated overview of where bioethics has been, where it now is, where it seems to be going, where I think we could do better, and where I dearly hope the field will be heading. I also propose three ways of re-orienting our theoretic tools to guide us in a new direction: (1) adopt an ethics of responsibility; (2) explore the responsibilities of various kinds of actors and relationships among them; (3) expand the types of participants engaged in bioethics.     

Lay perceptions of genetic testing in Germany and Israel: the interplay of national culture and individual experience

Germany and Israel represent opposite regulatory approaches and bioethical outlooks regarding genetic testing. This study examines lay attitudes (including attitudes of people affected by genetic diseases) in both countries towards genetic testing of adults, focusing on the differences between cultural and personal argumentations, as well as between affected and non-affected perspectives. With regard to three major emerging themes – medical technology/technocratic medicine; economic aspects of healthcare; and personal decision-making – a national contrast was apparent on the cultural level of argumentation, but not in the personal context of decision-making or in the concerns of people affected by genetic diseases. We conclude by discussing the interplay of national culture and individual experience in constructing arguments about the harms and benefits of genetic testing, and the implications for the study of cross-cultural bioethics in the context of “genetic responsibility”.     

Social Responsibility and the State's Duty to provide Healthcare: An Islamic Ethico‐Legal Perspective

The United Nations Educational, Scientific and Cultural Organization's (UNESCO) Declaration on Bioethics and Human Rights asserts that governments are morally obliged to promote health and to provide access to quality healthcare, essential medicines and adequate nutrition and water to all members of society. According to UNESCO, this obligation is grounded in a moral commitment to promoting fundamental human rights and emerges from the principle of social responsibility. Yet in an era of ethical pluralism and contentions over the universality of human rights conventions, the extent to which the UNESCO Declaration can motivate behaviors and policies rests, at least in part, upon accepting the moral arguments it makes. In this essay I reflect on a state's moral obligation to provide healthcare from the perspective of Islamic moral theology and law. I examine how Islamic ethico‐legal conceptual analogues for human rights and communal responsibility, ?uqūq al‐’ibād and far? al‐kifāyah and other related constructs might be used to advance a moral argument for healthcare provision by the state. Moving from theory to application, I next illustrate how notions of human rights and social responsibility were used by Muslim stakeholders to buttress moral arguments to support American healthcare reform. In this way, the paper advance discourses on a universal bioethics and common morality by bringing into view the concordances and discordances between Islamic ethico‐legal constructs and moral arguments advanced by transnational health policy advocates. It also provides insight into applied Islamic bioethics by demonstrating how Islamic ethico‐legal values might inform the discursive outputs of Muslim organizations.     

A more-than-human approach to bioethics: The example of digital health

Digital health technologies are often advocated as a way of helping people monitor, promote and manage their health, care for others and reduce the burden on healthcare systems. Yet these technologies have also been subject to criticism for limiting human flourishing and exacerbating socioeconomic disadvantage. Bioethical appraisals of digital health technologies tend to take a conventional risk-benefit approach, positioning the human subject as a rational, autonomous agent who is acted on by technologies. In this paper, I present a case for adopting an alternative more-than-human perspective on bioethics. A more-than-human approach considers human-technological assemblages and agencies as distributed, relational, situated and emergent. To illustrate the insights that this perspective can offer, I draw on the findings of four empirical projects I have conducted on people’s use of digital devices and platforms used for health-related purposes, including social media groups and online forums, mobile apps and wearable devices. I conclude with the argument that a more-than-human approach to bioethics can begin to incorporate a new ‘zoë ethics’ that can acknowledge and address the deeper affective, multisensory and relational dimensions of humans’ encounters with and enactments of material things and nonhuman creatures.     

PRESIDENTIAL ADDRESS: THE ETHICS OF RECOGNITION, RESPONSIBILITY, AND RESPECT

Ethics can be understood as a code of behaviour or as the study of codes of behaviour. While the mission of the International Association of Bioethics is a scholarly examination of moral issues in health care and the biological sciences, many people in the field believe that it is also their task to create new and better codes of practice. Both ways of doing bioethics are sound, but it is important to be aware of the distinction. In this paper, I will study the sources and aims of ethics and suggest a code of conduct for bioethicists based on recognition, responsibility, and respect.     

Teaching global bioethics

We live in a world with enormous disparities in health. The life expectancy in Japan is 80 years; in Malawi, 40 years. The under-five mortality in Norway is 4/1000; in Sierra Leone, 316/1000. The situation is actually worse than these figures suggest because average rates tend to mask inequalities within a country. Several presidents of the IAB have urged bioethicists to attend to global disparities and to broaden the scope of bioethics. For the last six years I have tried to do just that. In this paper, I report and reflect on my attempts to teach bioethics in ways that address global health and justice. I then discuss ways to address key ethical issues in global health: the problem of inequalities; the nature of the duty to assist; the importance of the duty not to harm; the difference between a cosmopolitan and a political view of justice. I also discuss how teaching about global health may help to shift the emphasis in bioethics--from sensational cases to everyday matters, from autonomy and justice, and from access to healthcare to the social determinants of health. At the end of my paper, I reflect on questions that I have not resolved: how to delineate the scope of bioethics, whether my approach over-politicises bioethics, and how to understand the responsibilities of bioethicists.     

A call from justice to support the people in Gaza

Using Madison Powers and Ruth Faden's definition of ‘well‐being,’ the authors argue that Israel, the international community and public health practitioners have a justice‐based obligation to assist the Palestinian people in the Occupied Palestinian Territories. Focusing on Palestinians in Gaza, the authors first outline a normative framework of justice, as articulated by Powers and Faden. Following Powers and Faden's assumption that empirical assessments of justice can be made using the six dimensions of well‐being, the authors next present current data on the living conditions in Gaza and describe how these conditions prevent residents from achieving sufficient levels of well‐being. Using these indicators to demonstrate that Palestinians living in Gaza suffer deficiencies in these dimensions of well‐being, the authors present a strong argument from justice to assist the residents of Gaza. The medical, public health, and bioethics community cannot sit idle while injustice continues.     

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.     

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.     

Accommodating religion and belief in healthcare: Political threats,agonistic democracy and established religion

This paper considers what concept of accommodation is necessary to identify and address discrimination, disadvantages and disparities in such a way that the plurality of religious people with their beliefs, values and practices may be justly accommodated in healthcare. It evaluates threats to the possibility of such accommodation pertaining by considering what beliefs and practices might increase the risk of unjust discrimination against and disadvantage for religious people, whether as individuals or as groups; and the risk of disparities between the care provided to religious people. The claim is that there is an important cluster of risks that are political in kind and emergent within philosophical bioethics. While not amounting (yet) to a trend, they are sufficiently threatening to a just civic life for patients and healthcare staff as to warrant scrutiny. After an Introductory Section 1, Section 2 evaluates a criticism of ‘accommodation’ and the apparently additional health-related requirements that those of religious faith demand, when compared with other people. It does so by comparing Lori Beaman's idea of agonism with that of a distinct and somewhat complementary approach in Jonathan Chaplin's political philosophy, before examining the role of established religion in setting the conditions for the accommodation of religion and belief in healthcare. Section 3 examines risks to such accommodation by engaging critically with three health-related instantiations of political philosophy that differ radically from both Beaman and Chaplin. A concluding Section 4 focusses on appropriate modes of communicating about religious and other beliefs in healthcare.     

Inhospitable Healthcare Spaces: Why Diversity Training on LGBTQIA Issues Is Not Enough

In an effort to address healthcare disparities in lesbian, gay, bisexual, transgender, and queer (LGBTQ) populations, many hospitals and clinics institute diversity training meant to increase providers’ awareness of and sensitivity to this patient population. Despite these efforts, many healthcare spaces remain inhospitable to LGBTQ patients and their loved ones. Even in the absence of overt forms of discrimination, LGBTQ patients report feeling anxious, unwelcome, ashamed, and distrustful in healthcare encounters. We argue that these negative experiences are produced by a variety of subtle, ostensibly insignificant features of healthcare spaces and interpersonal interactions called microaggressions. Healthcare spaces and providers often convey heteronormative microaggressions, which communicate to LGBTQ—and, we suggest, intersex and asexual (IA)—people that their identities, experiences, and relationships are abnormal, pathological, unexpected, unwelcome, or shameful. We identify heteronormative microaggressions common to healthcare settings and specify how they negatively impact LGBTQIA patients. We argue that standard diversity training cannot sufficiently address heteronormative microaggressions. Despite these challenges, healthcare institutions and providers must take responsibility for heteronormative microaggressions and take steps to reduce their frequency and mitigate their effects on LGBTQIA care. We conclude by offering strategies for problem-solving at the level of medical education, institutional culture and policy, and individual awareness.     

Cruel choices: autonomy and critical care decision-making

Although autonomy is clearly still the paradigm in bioethics, there is increasing concern over its value and feasibility. In agreeing with those concerns, I argue that autonomy is not just a status, but a skill, one that must be developed and maintained. I also argue that nearly all health-care interactions do anything but promote such decisional skills, since they rely upon assent, rather than upon genuinely autonomous consent. Thus, throughout most of their medical lives, patients are socialised to be heteronomous, rather than autonomous. Yet, at the worst possible time--critical care decision-making--when life and death consequences are attached to the choices, the paradigm shifts and real consent is sought, even demanded, thereby making an often traumatic situation even harder. I go on, though, to also reject paternalistic models of beneficence as an alternative. Rather, I conclude that the problem is so fundamental in healthcare that a genuine solution would require a radical restructuring. I recommend steps that can be taken in the interim to improve the situation and to move toward such a restructuring.     

The other side of trust in health care: prescribing drugs with the potential for abuse

Defining a nonpaternalistic yet achievable form of trust in medicine in an era of simultaneous patient empowerment and institutional control has been and remains an important task of bioethics. The 'crisis of trust' in medicine has been viewed mainly as the problem of getting patients to trust their health care providers, especially physicians. However, since paradigmatic cases of trust are mutual, bioethicists must pay more attention to physician trust in patients. A physician's view of the reasonableness of trust in a particular patient is affected not just by his or her relationship with that patient, but also by what is going on institutionally, professionally, legally and politically with regard to a given treatment or intervention. Since general moral principles are insufficient in determining the moral value and reasonableness of trust in particular instances, I discuss in detail the role of trust and distrust in the specific case of treating patients with medications implicated in drug abuse. I conclude that it is important to become aware, first, of the clinical significance of physician trust and distrust in patients, and second, of the many factors which inform both of these moral attitudes. These two claims together suggest that a central, but overlooked, virtue of medical practice is reflective, context-responsive trust in patients.     

The Individualist Model of Autonomy and the Challenge of Disability

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

Solidarity in contemporary bioethics--towards a new approach

This paper, which is based on an extensive analysis of the literature, gives a brief overview of the main ways in which solidarity has been employed in bioethical writings in the last two decades. As the vagueness of the term has been one of the main targets of critique, we propose a new approach to defining solidarity, identifying it primarily as a practice enacted at the interpersonal, communal, and contractual/legal levels. Our three-tier model of solidarity can also help to explain the way in which crises of solidarity can occur, notably when formal solidaristic arrangements continue to exist despite 'lower tiers' of solidarity practices at inter-personal and communal levels having 'broken away'. We hope that this contribution to the growing debate on the potential for the value of solidarity to help tackle issues in bioethics and beyond, will stimulate further discussion involving both conceptual and empirically informed perspectives.     

Bioethics: power and injustice: IAB presidential address

A major focus within the modern bioethics debate has been on reshaping power relationships within the doctor-patient relationship. Empowerment of the vulnerable has been achieved through an emphasis on human rights and respect for individual dignity. However, power imbalances remain pervasive within healthcare. To a considerable extent this relates to insufficient attention to social injustice. Such power imbalances together with the development of new forms of power, for example through new genetic biotechnology, raise the spectre of increasing social injustice. Attention will be drawn to the need to extend the bioethics debate to include ethical considerations regarding public health. Changes in political philosophy will also be required to reshape international power relations and improve population health.     

Is an account of identity necessary for bioethics? What post-genomic biomedicine can teach us

Is a theory of identity necessary for bioethics? In this paper I investigate that question starting from an empirical explication of identity based on post-genomics, in particular on epigenetics. After analysing whether the classic problems a theory of identity has to cope with (fictional transplants; conjoined twins; and definition of death) also affect the proposed epigenetic account of identity, I deal with three topics (the assumption of moral responsibility; decision maintenance in the case of advance directives; and the attribution of value to human beings at given developmental stages) to offer an insight on the relationship between that account and bioethics.