This article challenges a key tacit assumption underpinning legal and ethical instruments in health care, namely, that people are ideally bounded, independent, and often also strategically rational individuals. Such an understanding of personhood has been criticized within feminist and other critical scholarship as being unfit to capture the deeply relational nature of human beings. In the field of medicine, however, it also causes tangible problems. I propose that a solidarity-based perspective entails a relational approach and as such helps to formulate (...) new solutions to complex ethical and regulatory questions, ranging from caring for people at the end of their lives to improving policies for organ donation and better governance of health data. It also underscores the importance of universal health care. Although a solidarity-based perspective does not require health to be seen as an individually enforceable right, it does influence our understanding of individual rights: it draws attention to how their meaning is shaped by shared social practices. I conclude by arguing that, in light of current pressures for medicine to become more personalized, using a relational understanding of personhood to shape policies and practices is a much needed endeavor. (shrink)

An analysis of the policy, research and historical documents was performed to better understand the regulatory context within which the Japanese government has come to address the social control of human genome research and the measures it has taken, with regard to the handling of personal data, an area where innovations in the life sciences and in information and communication technology overlap. Our study revealed a shift in policy over time from a rigid to a more collaborative approach to regulation. (...) From the 1980s to the 2000s, security control measures were developed to prevent leakage of personal data to external entities, using methods such as anonymisation, which can be applied in a linkable or unlinkable fashion. However, by the 2010s, de-identification measures have been introduced. They make it possible to utilise personal data that is de-identified in certain types of genomic research. This also involved the establishment of an independent data protection authority that controls the utilisation of data in collaboration with other stakeholders. Through this process, bioethics policy has become an established science and technology policy in Japan; and in recent years, bioethics policy has also gained relevance in areas outside the life sciences. (shrink)

This paper addresses three factors that have contributed to shifts in decision making in health care. First, the notion of patient autonomy, which has changed due to the rise of patient-centred approaches in contemporary health care and the re-conceptualization of the physician-patient relationship. Second, the understanding of patient autonomy has broadened to better engage patient participation. Third, the need to develop cross-cultural health care ethics. Our paper shows that the shift in the West from the individual to the relational self (...) indicates an important change in the understanding of autonomy through the lens of culture. Practices that recognize the notion of the relational self allow for a more balanced view of autonomy and a richer conception of moral agency. (shrink)

In their book Spare Parts, published in 1992, Fox and Swazey criticized various aspects of organ transplantation, including the routinization of the procedure, ignorance regarding its inherent uncertainties, and the ethos of transplant professionals. Using this work as a frame of reference, we analyzed articles on organ transplantation published in internal medicine and transplantation journals between 1995 and 2008 to see whether Fox and Swazey’s critiques of organ transplantation were still relevant.

Some commentators have criticized bioethics as failing to engage religion both as a matter of theory and practice. Bioethics should work toward understanding the influence of religion as it represents people's beliefs and practices, but bioethics should nevertheless observe limits in regard to religion as it does its normative work. Irreligious skepticism toward religious views about health, healthcare practices and institutions, and responses to biomedical innovations can yield important benefits to the field. Irreligious skepticism makes it possible to raise questions (...) that otherwise go unasked and to protect against the overreach of religion. In this sense, bioethics needs a vigorous irreligious outlook every bit as much as it needs descriptive understandings of religion. (shrink)

A truly Christian bioethics challenges the nature, substance, and application of secular morality, dividing Christians from non-Christians, accenting central moral differences, and providing content-full forthrightly Christian guidance for action. Consequently, Christian bioethics must be framed within the metaphysical and theological commitments of Traditional Christianity so as to provide proper orientation toward God. In contrast, secular bioethicists routinely present themselves as providing a universal bioethics acceptable to all reasonable and rational persons. Yet, such secular bioethicists habitually insert their own biases and (...) prejudices into their moral conclusions, ethical consultations, and political aspirations, without any real justification. As this article explores, the ideologically driven anti-Christian commitments, including commitments to human rights and social justice, embodied within contemporary bioethics routinely illustrate the increasing gap between the traditionally Christian and the devoutly secular, further deepening the culture wars. (shrink)

Technology corporations and the emerging digital health market are exerting increasing influence over the public healthcare agendas forming around the application of mobile medical devices. By promising quick and cost-effective technological solutions to complex healthcare problems, they are attracting the interest of funders, researchers, and policymakers. They are also shaping the public facing discourse, advancing an overwhelmingly positive narrative predicting the benefits of wearable medical devices to include personalised medicine, improved efficiency and quality of care, the empowering of under-resourced communities, (...) and delivery of health services previously unavailable to the citizens of developing countries. Typically techno-optimist in their description, the key barriers to this impending inflection point in healthcare are identified as technical issues such as short battery life and a lack of data protection. However, this tech innovation narrative is consistent with problematic ethical, social, and political assumptions that have practical and normative effects, and risk, one, undermining the real clinical potential of wearable devices and, two, designing social inequality and injustice into our mobile health interventions in global healthcare. I argue that the foundational assumptions dealing with the just distribution of healthcare ‘goods’, the individual as part of society, and the political framing of future healthcare policy devalue equity and despite what they promise cannot meet the distinctive needs of individuals and groups that do not conform to a standardised concept of care-receiver. (shrink)

Progressing beyond the given has been a key modern tendency. Yet modern societies are currently facing the problem of how to put limits on progress, expansion, and growth, live within them, and preserve (rather than transcend) the present. Drawing on economic sociology scholarship on valuation and morality in economic life, this article develops and applies the term economization to analyze the enactment of limits on progress. The question of end-of-life care—when to stop medical efforts to prolong life, postpone death, and (...) advance the scientific frontier—serves as an illustrative empirical case that sheds light on limit-setting in general. My analysis of this case combines historical, ethnographic, and in-depth interview data on US palliative care clinicians, who specialize in making life-and-death decisions in acute care hospitals. (shrink)

Contemporary clinical ethics was founded on principlism, and the four principles: respect for autonomy, nonmaleficence, beneficence and justice, remain dominant in medical ethics discourse and practice. These principles are held to be expansive enough to provide the basis for the ethical practice of medicine across cultures. Although principlism remains subject to critique and revision, the four-principle model continues to be taught and applied across the world. As the practice of medicine globalizes, it remains critical to examine the extent to which (...) both the four-principle framework, and individual principles among the four, suffice patients and practitioners in different social and cultural contexts. Using the four-principle model we analyze two accounts of surrogate decision making – one from the developed and one from the developing world – in which the clinician undertakes medical decision-making with apparently little input from the patient and/or family. The purpose of this analysis is to highlight challenges in assessing ethical behaviour according to the principlist model. We next describe cultural expectations and mores that inform both patient and clinician behaviors in these scenarios in order to argue that the principle of respect for persons informed by culture-specific ideas of personhood may offer an improved ethical construct for analyzing and guiding medical practice in a globalized and plural world. (shrink)

“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding (...) of ethics,” addressing three different issues: (a) the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, (b) the normative relevance of such lay moralities for the justification of ethical decisions, and (c) the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ. (shrink)

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. (shrink)

I have been invited to reflect on “Discourse communities and the discourses of experience” a paper co-authored by Little, Jordens, and Sayers and discuss how their analysis of discourse communities has influenced the development of bioethics and consider its influence now and potential effects in the future. Their paper examines the way different discourse communities are shaped by different experiences and desires. The shared language and experiences can provide a sense of belonging and familiarity. These can be positive aspects of (...) a discourse community, but there are also risks restricting the voices and experiences that can be heard and recognized. In this essay I hope to weave together three threads: an analysis of Little, Jordens, and Sayer’s research on discourse communities; the narrative interview I conducted with Little about his own experiences in establishing a bioethics centre; and my own experience of the bioethical discourse community established by Little. (shrink)

Abstract“Clinical ethics consultants” have been practicing in the United States for about 50 years. Most of the earliest consultants—the “pioneers”—were “outsiders” when they first appeared at patients' bedsides and in the clinic. However, if they were outsiders initially, they acclimated to the clinical setting and became “insiders” very quickly. Moreover, there was some tension between traditional academics and those doing applied ethics about whether there was sufficient “critical distance” for appropriate reflection about the complex medical ethics dilemmas of the day (...) if one were involved in the decision making. Again, the pioneers deflected concerns by identifying and instituting safeguards to assure professional objectivity in clinical ethics consultation services. One might suggest that in moving inside and establishing normative practices, the pioneer clinical ethics consultants anticipated adoption of their routines and professionalization of the field. (shrink)

Deep brain stimulation (DBS) is an effective treatment for the debilitating motor symptoms of Parkinson’s disease and other neurological disorders. However, clinicians and commentators have noted that DBS recipients have not necessarily experienced the improvements in quality of life that would be expected, due in large part to what have been described as the ‘psychosocial’ impacts of DBS. The premise of this paper is that, in order to realise the full potential of DBS and similar interventions, clinical services need to (...) be arranged in such a way that these psychosocial dimensions are recognised and managed. Our starting point is that the psychosocial effects of DBS ‘in the field’ present us with analytically-useful disruptions: they disturb and foreground deeply held assumptions relating to the individual, health and its treatment, and which in a crude form manifest as the myth of technological solutionism within health care. Drawing on scholarship in medical sociology and science and technology studies (STS), we argue that DBS brings to the fore the relational dimensions of personhood, and demonstrates the emotional and social turmoil that can result if the relational dimensions of personhood are ignored by clinical services. In light of this, we argue that DBS should be implemented within a regime of care. Drawing on ethnographic research of a paediatric DBS clinical service, we provide an example of a regime of care, and conclude by reflecting on what other DBS services might learn from this paediatric service. (shrink)

Contemporary bioethics has evolved over the past 40 years predominantly as a “Western” construct drawing fundamental inspiration for its conceptual and methodological frameworks from secular, Anglo-American philosophical traditions. American bioethicists can be credited with playing a defining role in the globalization of this new discipline to the developing countries of the world, but in this process, in the words of LaFleur, “Bioethics has become international without becoming internationalized.” Among the criticisms leveled against the dominant American model of bioethics is that (...) in its focus on universalism it ignores local cultural and religious influences that are vital to the comprehension of the moral life in many societies. Medical sociologist Renée C. Fox and historian Judith P. Swazey have termed this as a form of “cultural myopia.”. (shrink)

How did bioethics manage to grow, flourish and ultimately do so well from a very unpromising birth in the 1970s? Many explanations have been advanced. Some ascribe the field9s growth to a puzzling, voluntary abnegation of moral authority by medicine to non-physicians. Some think bioethics survived by selling out to the biomedical establishment—public and private. This transaction involved bestowing moral approbation on all manner of biomedicine9s doings for a seat at a well-stocked funding table. Some see a sort of clever (...) intellectual bamboozlement at work wherein bioethicists pitched a moral elixir of objective expertise that the morally needy but unsophisticated in medicine and the biological sciences were eager to swallow. While each of these reasons has its defenders, I think the main reason that bioethics did well was that it did good. By using the media to move into the public arena, the field engaged the public imagination, provoked dialogue and debate, and contributed to policy changes that benefitted patients and healthcare providers. (shrink)

This paper raises questions about bioethical knowledge and the bioethical ‘expert’ in the context of contestation over methods. Illustrating that from the perspective of the development of bioethics, the lack of unity over methods is highly desirable for the field in bringing together a wealth of perspectives to bear on bioethical problems, that same lack of unity also raises questions as to the expert capacity of the ‘bioethicist’ to speak to contemporary bioethics and represent the field. Focusing in particular on (...) public bioethics, the author argues that we need to rethink the concept of bioethicist, if not reject it. The concept of the bioethicist connotes a disciplinary or theoretical unity that is simply not present and from the perspective of public policy, it is incredibly misleading. Instead, bioethical expertise would be a capacity of a broader community, and not an individual. Such a conception of bioethics as an expert community rather than as an individual capacity, focuses our attention on the more functional question of what knowledge and skill set any individual possesses. (shrink)

To quote Yogi Berra, writing this editorial is a “déja vu all over again” experience for us. It entails not only collaborating once more as coauthors but also reiterating some of the criticisms and concerns that have figured prominently in virtually all our previous publications about bioethics—most recently in our book Observing Bioethics.

A 10-year retrospective analysis of consent documentation for the donation of leftover or residual human tissue from surgical interventions at a major academic healthcare institution in Singapore was conducted. Findings suggest that demographics like gender, religious belief and socioeconomic status could be indicators of the willingness of a patient to donate residual tissue to a tissue repository or biobank for future research use. Patients in general did not decide to donate based on specific details that were provided to them. Instead, (...) those who donated were of a background that engendered a level of security or confidence that harm would not befall them. It is argued that willingness to donate depended more on this sense or perception of security that arose from systemic trustworthiness than from the rigour of consent-taking. In 2015, changes to the regulation of tissue banking and related activities in Singapore include legislative requirement for a prescribed list of information to be provided to a prospective tissue donor in consent-taking. While this and other legislative changes are important to ensure that tissue donation for research remains informed and voluntary, it is argued that trust and trustworthiness remain an unfinished project. Tissue repositories or biobanks more broadly must be constituted as moral institutions that safeguard the interests and rights of altruistic tissue donors. More critically, they must advance security and trustworthiness through good stewardship that is directed at promoting the common good through accountability, transparency and control. (shrink)

In the traditions of narrative ethics and casuistry, stories have a well-established role. Specifically, illness narratives provide insight into patients’ perspectives and histories. However, because they tend to see fiction as an aesthetic endeavour, practitioners in these traditions often do not realize that fictional stories are valuable moral sources of their own. In this paper I employ two arguments to show the mutual relationship between bioethics and fiction, specifically, science fiction. First, both discourses use imagination to set a scene and (...) determine a perspective. Second, bioethics and science fiction share the family resemblance of expressing moral beliefs. I then consider how understanding bioethics and science fiction as interrelated discourses can be the basis of a methodology for inquiry into relational autonomy in the context of biotechnologies and medicine. As an example of this methodology, I analyse Fay Weldon’s novel The Cloning of Joanna May (1989). (shrink)

The consolidation of the interdisciplinary field of bioethics in Europe and in the United States was accompanied by harsh criticisms by the social sciences; criticisms that have endured and been reshaped from the late twentieth century until the present. This article begins with a critical discussion of the myopia detected in a bioethical thought that has systematically disregarded its origins, both cultural and social. I claim that this deficit could be rectified if social scientists, in general, and sociologists, in particular, (...) were to move away from the periphery, which they still occupy today, and take up a central position in the area of bioethics. In order to analyze the distant and controversial relationship between the social sciences and bioethics, I proceed to an analysis of their various approaches, respectively guided by descriptive and normative ethics. The specific intersection of sociologists with bioethical thought will be scrutinized, in accordance with an analytical continuum that illustrates an evolution from a collaborative position to a free and independent position adopted by the social scientists. The article concludes by presenting a suggestion regarding the integration of the sociological imagination in the processes of ethical deliberation on the moral problems that emerge in biomedical research and clinical practice. In this context, further epistemological reflection is invited regarding the influence of socio-cultural sources of morality relating to the manner in which such problems have been challenged by the bioethical imagination. (shrink)

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. (shrink)

Volume 20, Issue 10, October 2020, Page 29-31.

This essay provides a brief overview of the rise of organ trade in Pakistan towards the end of the last century and the concerted, collective struggle—of physicians and medical associations aided by the media, journalists, members of civil society, and senior judiciary—in pressuring the government to bring about and implement a national law criminalizing such practices opposed by an influential pro-organ trade lobby. It argues that among the most effective measures to prevent re-emergence of organ trafficking in the country is (...) increasing ethical live donations and above all, establishing sustainable, public supported deceased donor programs. To do this, the transplant community must recognize that organ transplantation is not merely a donor-recipient-physician transaction but a complex issue in which decisions to donate an organ are influenced by indigenous values and belief systems about human illness, life and death. (shrink)

Travel for reproductive health care has become a widespread global phenomenon. Within the field, the decision to travel to seek third parties to assist with reproduction is widely assumed to be autonomous. However there has been scant research exploring the application of the principle of autonomy to the experience of the cross-border traveller. Seeking to contribute to the growing, but still small, body of sociological bioethics research, this paper maps the application of the ethical principle of autonomy to the lived (...) experience of infertile individuals who cross borders for reproductive care. It examines their choices as patient, consumer and traveller. It suggests that their experience evidences a contradictory autonomy, which offers them both choice and no choice in their final decision to travel. The paper argues that this lack of meaningful autonomy is enabled by a medicalised framework of infertility which prioritises technology as the cure to infertility. This both shapes expectations of infertile individuals and limits their options of family creation. Ultimately, the paper suggests that sociological bioethics research shows that the liberatory credentials of technology should be questioned, and identifies that this field demands greater scholarly attention. (shrink)

If funding allocation is an indicator of a field’s priorities, then the priorities of the field of bioethics are misaligned because they perpetuate injustice. Social justice mandates priority for the factors that drive systematic disadvantage, which tend not to be the areas supported by funding within academic bioethics. Current funding priorities violate social justice by overemphasizing technologies that aim to enhance the human condition without addressing underlying structural inequalities grounded in racism, and by deemphasizing areas of inquiry most frequently pursued (...) by Scholars of Color. This lack of attention to upstream determinants of health in bioethics research perpetuates a gap in the resources needed to understand the experiences of communities disproportionately experiencing poor health, which is itself a form of epistemic injustice. Both social and epistemic injustices are apparent in the impact of these funding priorities on people of color, both in the public and in the bioethics community. (shrink)

When laypeople learned what decisions physicians were making about laypeople's health they were often appalled. … They discovered that physicians … were making controversial moral moves, choices th...

This article presents the notions of ethos and eidos as field level concepts for the sociology of morality and the anthropology of ethics. This is accomplished in the context of Bourdieuan social theory and, therefore, from the broad standpoint of practice theory. In the first instance these terms are used to refer to the normative structures of social fields and are conceived so as to represent the way in which such structures fall between two planes, that of the implicit and (...) the explicit. Subsequently, they are used to further understand a distinction between morality—roughly, the implicit moral order of a social field—and ethics—the more explicit and often codified elements of a social field’s normative structure. When presented in relation to academic philosophical inquiries into the ethical issues in healthcare and the life sciences—meaning the disciplines of applied ethics in general and applied ethics in particular—the analytic perspective these terms facilitate enables us to represent the fundamental conditions required for academic enquiry; taken together the ethos and eidos of an intellectual field constitute the requisite background of its normative epistemic and methodological commitments, thereby providing the structures of disciplined intellectual practices. Seen in this light it not only becomes possible to grasp applied ethics as a socially structured practice but to understand it in terms that can also be used to frame our everyday moral practices. In this way applied ethics can be acknowledged as a relatively unique part of our contemporary moral culture. (shrink)

This essay is a critique of medical/clinical ethics from the personal perspective of a medical historian in an academic health science centre who has interacted with ethicists. It calls for greater transparency and accountability of ethicists involved in ‘bedside consulting;’ it questions the wisdom of the four principles of biomedical ethics and their American cultural origins with respect to training; challenges the authority of ‘core competencies’ for ethicists as identified by the American Society for Bioethics and Humanities; and muses over (...) the apparent reintroduction of religion into clinical medicine through the medium of bioethics. This essay is designed to provoke reflection on the putative ‘professionalism’ of the consulting ethics enterprise for which educational baselines and curricula are not standardized. By analysing sources such as the professional material communicated by the Canadian Bioethics Society, it also critiques the collective ethical shortcoming... (shrink)

Some claim that “global health is public health” but most regard global health as a new field, rapidly emerging mostly at North American academic institutions . The term was first incorporated into University of California, San Francisco’s Institute for Global Health in 1999 and UCSF also inaugurated the first North American master of science in global health in 2009. Global health is commonly acknowledged to have historical precedents in tropical medicine and international health. All three fields are regarded as having (...) some overlapping and some distinctive features . One overlapping feature of all three is retaining traces of European and/or North American conquest, imperialism, and colonialism that create a legacy of ongoing ethical challenges for global health . One touted distinctive feature of global health is its .. (shrink)

The objective of this paper is to understand from a sociological perspective how the moral question of euthanasia, framed as the “right to die”, emerges and is dealt with in society. It takes France and Germany as case studies, two countries in which euthanasia is prohibited and which have similar legislation on the issue. I presuppose that, and explore how, each society has its own specificities in terms of practical, social and political norms that affect the ways in which they (...) deal with these issues. The paper thus seeks to understand how requests for the “right to die” emerge in each society, through both the debate (analysis of daily newspapers, medical and philosophical literature, legal texts) and the practices (ethnographic work in three French and two German hospitals) that elucidate the phenomenon. It does so, however, without attempting to solve the moral question of euthanasia. In spite of the differences observed between these two countries, the central issue at stake in their respective debates is the question of the individual’s autonomy to choose the conditions in which he or she wishes to die; these conditions depend, amongst others, on the doctor-patient relationship, the organisation of end-of-life care in hospital settings, and more generally, on the way autonomy is defined and handled in the public debate. (shrink)

Since it is now broadly acknowledged that ethics should receive early consideration in discourse on emerging technologies, ethical debates tend to flourish even while new fields of technology are still in their infancy. Such debates often liberally mix existing applications with technologies in the pipeline and far-reaching visions. This paper analyses the problems associated with this use of ethics as “preparatory” research, taking discourse on human enhancement in general and on pharmaceutical cognitive enhancement in particular as an example. The paper (...) will outline and discuss the gap between the scientific and technological state of the art and the ethical debates, pointing out epistemic problems in this context. Furthermore, it will discuss the future role of genuine ethical reflection in discourse on human enhancement, arguing also that such discourse needs to include a technology assessment—in the broad sense of the term—which encompasses, inter alia, anthropological perspectives and aspects of social theory. (shrink)