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.     

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.     

Together we lived,and alone you died: Loneliness and solidarity in Gaza

This essay discusses and weaves together three interrelated topics: loneliness as a neglected bioethics problem, solidarity as one potential solution to loneliness, and the Israeli‐Palestinian Conflict as a neglected bioethics problem in which loneliness is stark. I first present and define various kinds of loneliness, focusing on ethical loneliness, defined as suffering injustice without a proper repair process. I next discuss current health conditions in Gaza, focusing on healthcare providers who, according to the UN, are being intentionally targeted by Israel. I explain how the various kinds of loneliness are reflected among people in Gaza. I lastly relate together the notions of solidarity, responsibility and personal autonomy, arguing that bioethicists and healthcare providers have a duty to support the people in Gaza, stemming from solidarity and an extended responsibility perspective.     

Gender context of personalism in bioethics

Personalism is one of the philosophical perspectives which hold that the reality in person and the human person has the highest intrinsic value. This paper makes reference to Louis Janssens' eight criteria in adequate consideration of the human person but further argues that there is need to consider people as situated agents especially within gender relational perspectives. The paper identifies gender as an important social construction that shapes the consideration of the human persons within socio-spatial spheres. The main crux of the paper is that there is a gender context of personalism and this has profound implications for bioethical agendas. Gender is part of the human condition, especially when we philosophically or sociologically engage the notion of equity and equality within the social system, because social realities in the relational perspective are not impartial, impersonal and equal. Gender does not determine morality but it plays a role in morality and expectations from moral agents. Women have been categorised as a sociological group because their integrity, freedom/autonomy and dignity (which are basic concerns of bioethics) are capable of being threatened. A gender perspective provides important incentives for moral theory which searches for possible conceptual imbalances or blind spots in ethical reflections. The paper refers to Sen's faces of gender inequality and expands on the notion that natality inequality is one of the fundamental levels of gender inequality, which in turn is the primary starting agenda in bioethics. The paper avers that the recognition of the fundamental importance of gender to the organization of social reality and the development of personal identities have important practical implications for bioethics.     

A critique of the principle of ‘respect for autonomy’, grounded in African thought

I give an account how the principle of ‘respect for autonomy’ dominates the field of bioethics, and how it came to triumph over its competitors, ‘respect for persons’ and ‘respect for free power of choice’. I argue that ‘respect for autonomy’ is unsatisfactory as a basic principle of bioethics because it is grounded in too individualistic a worldview, citing concerns of African theorists and other communitarians who claim that the principle fails to acknowledge the fundamental importance of understanding persons within the nexus of their communal relationships. I defend the claim that ‘respect for persons’ is a more appropriate principle, as it is able to acknowledge both individual decision making and the essential relationality of persons. I acknowledge that my preference for ‘respect for persons’ is problematic because of the important debate around the definition of ‘personhood’ in bioethics discourse. Relying on Thaddeus Metz's conception of moral status, I propose a relational definition of personhood that distinguishes between persons with agency and persons without agency, arguing that we have different moral obligations to these distinct categories of persons. I claim that this conception of personhood is better able to accommodate our moral intuitions than conventional approaches, and that it is able to do so without being speciesist or question‐begging.     

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.     

WHAT CAN HISTORY DO FOR BIOETHICS?

This article details the relationship between history and bioethics. I argue that historians' reluctance to engage with bioethics rests on a misreading of the field as solely reducible to applied ethics, and overlooks previous enthusiasm for historical perspectives. I claim that seeing bioethics as its practitioners see it – as an interdisciplinary meeting ground – should encourage historians to collaborate in greater numbers. I conclude by outlining how bioethics might benefit from new histories of the field, and how historians can lend a fresh perspective to bioethical debates.     

Seen by the state: Bureaucracy,visibility and governmentality in a Papua New Guinean hospital

Drawing on ethnographic material from a government hospital in Papua New Guinea (PNG), this paper examines the relationship between power and visibility in two kinds of bureaucratic practice: hospital managers’ performance of institutional ‘transparency’ and patients’ careful management of their government health documents. In both examples, people engage with bureaucratic and biomedical technologies of visibility to entice governing actors to see and enter into a relationship with them. Against dominant Foucauldian theories of power‐vision, the article shows that, in the institutional crevices of a ‘weak state’, bureaucratic technologies operate as relational technologies that elicit affective motivations rather than as disciplinary technologies that transform the self.     

Rights and responsibilities in rural South Africa: implications for gender,generation, and personhood

In the rural Eastern Cape, South Africa, contests over the meaning and merit of human rights feature prominently in intergenerational and intergendered conflicts. In this article I identify and analyse a tension between amalungelo (a socially embedded and relational form of rights) and irhayti (a Xhosaization of the English ‘[human] right’) as a means of exploring the interpersonal tensions that arise through the production and contestation of the subject positions that human rights set in motion. Using the examples of elders’ complaints of neglect, and of young men's accusations of human rights violations on the part of women, I ground this investigation in men's and elders’ explanations of how human rights enable morally reprehensible actions, and are implicated in what they perceive to be a climate of interpersonal neglect. In analysing these claims, I show that gendered and generational conflict in this region is grounded in uncertainty about the content of gendered and generational subject positions themselves, and speaks to the relative moral value of autonomous versus relational forms of personhood. Moreover, I show that where inequality and interdependence are intrinsic to the ways in which gendered and generational subject positions are constituted and understood, human rights serve both to destabilize the content of these subject positions in ways that render appropriate gendered and generational sociality unclear, and also to bring into question the relative moral value of autonomous versus more relational forms of personhood.     

Beyond the Sterility of a Distinct African Bioethics: Addressing the Conceptual Bioethics Lag in Africa

In the current debate on the future of bioethics in Africa, several authors have argued for a distinct communitarian African bioethics that can counter the dominancy of Western atomistic principlism in contemporary bioethics. In this article I examine this rather contentious argument and evaluate its validity and viability. Firstly, I trace the contextual origins of contemporary bioethics and highlight the rise and dominance of principlism. I particularly note that principlism was premised on a content‐thin notion of the common morality that is in need of enrichment. I also contend that bioethics is essentially two‐dimensional, being both conceptual and empirical, and indicate the lag in Africa with regard to conceptual bioethics. I then appeal for authentic engagement by 1) African health care professionals, 2) African health care training institutions, 3) Africa's bioethics development partners, and 4) African bioethicists and philosophers, towards addressing this critical lag. I underline the need to maintain the essential universality of bioethics as a discipline. I particularly argue against the pursuit of a distinct African bioethics, as it appears to be rooted in sterile African ethno‐philosophy. Rather, African bioethicists and philosophers would do well to elucidate the universalisability of insights from traditional African thought, for the benefit of bioethics as a whole. Thus we must engage beyond the sterility of a distinct African bioethics ‐ authentically reflecting on the essentially universal contemporary bioethical concerns ‐ to effectively articulate a viable trajectory for bioethics in Africa.     

Microethics in action

The future development of bioethics has been discussed in a number of articles in recent years, principally with regard to the trend towards empirical studies. However, what is meant by empirical studies in this context and how it is to be used concretely have been subject to varying interpretations. The purpose of this article is to develop what we term the microethical approach as a concrete method for an empirically driven bioethics. By adopting a microethical perspective, we will illustrate an analytical concept for describing and demonstrating how, as a result of contextual circumstances and forms of understanding, different individuals in their everyday life adopt different coping strategies and behavior patterns in relation to ethical values. From a deepened perspective, the complexity of human behavior becomes apparent, and knowledge is gained about how moral problems are perceived and construed by those whom they in fact affect. We intend first and foremost to develop the microethical methodology by elucidating the methods and approaches that can help in clarifying moral dilemmas on a microethical level, and how the relationship between the empirical material and the ethical analysis evolves over the course of the analysis. This is exemplified by a study of caregivers' entrance into patients' private lives through the provision of care and assistance in the home.     

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.     

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.     

Bioethics and practical justice in the post‐COVID‐19 era

The ethical concept of justice, as it relates to the development and deployment of innovative health technologies, commands the fair and equitable distribution of burdens and benefits. In bioethics, specific guidance on practical strategies for achieving what this concept of justice demands are somewhat elusive. Drawing on issues of justice arising or likely to arise in the context of the search for a vaccine or cure for COVID‐19, this paper argues for a focus on the concept of “practical justice” in post‐pandemic bioethics work. To illustrate the value and promise of this concept, the paper reflects on an approach to achieving practical justice in health biotechnology research that is grounded in a commitment to offer technical assistance to developing and under‐resourced nations.     

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.     

Current bioethical issues in parasitology

Parasitic diseases constitute the most common infections among the poorest billion people, entailing high mortality rates and leading to long-term infirmities and poverty. Although the setting-up of public health programs implies many ethical consequences, the range of specific questions in parasitology that can be attributed to bioethics remains, to a large extent, unexplored. From the present analysis, it emerged three main issues which characterize ethical stakes in parasitology: accounting the complexity of the field of intervention, putting the principle of justice into practice and managing the changing context of research. From the research angle, medical parasitology-mycology, as other biological disciplines, is undergoing tensions derived from biological reductionism. Thanks to its links with the history and philosophy of the sciences, bioethics can help to clarify them and to explain the growing hold that technologies have over scientific thinking. On the whole, researchers as well as clinicians are called on to assume a specific responsibility, proportional to their competence and their place in the making of scientific, health, economic and social decisions.     

Human genetic technologies,European governance and the politics of bioethics

With human genetic technologies now an important area of European research and development, bioethics is becoming increasingly important in its regulation and future. As regulatory decisions are also statements about who should get what, bioethics cannot avoid political controversy. Can bioethics sustain its claimed role as authoritative adviser to decision makers, or will its attempts to reach a consensus on human genetic technologies be perceived as the actions of an ambitious interest group? What, in short, is its political future in Europe and elsewhere?     

The Mining Minds digital health and wellness framework

Background

The provision of health and wellness care is undergoing an enormous transformation. A key element of this revolution consists in prioritizing prevention and proactivity based on the analysis of people’s conducts and the empowerment of individuals in their self-management. Digital technologies are unquestionably destined to be the main engine of this change, with an increasing number of domain-specific applications and devices commercialized every year; however, there is an apparent lack of frameworks capable of orchestrating and intelligently leveraging, all the data, information and knowledge generated through these systems.

Methods

This work presents Mining Minds, a novel framework that builds on the core ideas of the digital health and wellness paradigms to enable the provision of personalized support. Mining Minds embraces some of the most prominent digital technologies, ranging from Big Data and Cloud Computing to Wearables and Internet of Things, as well as modern concepts and methods, such as context-awareness, knowledge bases or analytics, to holistically and continuously investigate on people’s lifestyles and provide a variety of smart coaching and support services.

Results

This paper comprehensively describes the efficient and rational combination and interoperation of these technologies and methods through Mining Minds, while meeting the essential requirements posed by a framework for personalized health and wellness support. Moreover, this work presents a realization of the key architectural components of Mining Minds, as well as various exemplary user applications and expert tools to illustrate some of the potential services supported by the proposed framework.

Conclusions

Mining Minds constitutes an innovative holistic means to inspect human behavior and provide personalized health and wellness support. The principles behind this framework uncover new research ideas and may serve as a reference for similar initiatives.

     

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 cosmopolitics of flow and healing in north‐central Timor‐Leste

In north central Timor‐Leste, multi‐sensory ecological engagement is deeply entangled with conceptualisations of and approaches to people’s wellbeing. How people understand human health and wellbeing is closely related to how they understand nature or more particularly human/nature relations and distinctions across multiple timescales. Working through complex cosmopolitics and activated through cross‐temporal more‐than‐human ‘mutualities of being’, kinship networks are attuned to relational flows between ‘bodies’ and things. Rather than concentrating on the disjunctions created by the differences in the natures of beings or their ritual separation, this paper examines how relational flows between such ‘bodies’ and things open up cosmopolitical spaces for the creation and negotiation of intergenerational wellbeing.