This book provides an analysis of the debate surrounding cultural diversity, and attempts to reconcile the seemingly opposing views of "ethical imperialism," the belief that each individual is entitled to fundamental human rights, and cultural relativism, the belief that ethics must be relative to particular cultures and societies. The author examines the role of cultural tradition, often used as a defense against critical ethical judgments. Key issues in health and medicine are explored in the context of cultural (...) class='Hi'>diversity: the physician-patient relationship, disclosing a diagnosis of a fatal illness, informed consent, brain death and organ transplantation, rituals surrounding birth and death, female genital mutilation, sex selection of offspring, fertility regulation, and biomedical research involving human subjects. Among the conclusions the author reaches are that ethical universals exist, but must not be confused with ethical absolutes. The existence of ethical universals is compatible with a variety of culturally relative interpretations, and some rights related to medicine and health care should be considered human rights. Illustrative examples are drawn from the author's experiences serving on international ethical review committees and her travels to countries in Africa, Asia, and Latin America, where she conducted educational workshops and carried out out her own research. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Précis of Microaggressions in MedicineLauren Freeman (bio) and Heather Stewart (bio)Microaggressions in Medicine demonstrates that the harms of microaggressions are anything but micro. Guided by diverse patient testimonies and case studies, the book focuses on harms experienced by patients who are marginalized on the basis of race, gender, sexual orientation, body size, and disability. It amplifies their voices, stories, and experiences, which have too often been excluded from (...) mainstream bioethical, medical, and popular discussions. The novel account advanced in Microaggressions in Medicine illustrates that microaggressions in medicine are not rare, but frequent in the healthcare experiences of marginalized patients. Our hope is that the book helps patients better understand and make sense of their experiences. We also hope that it helps current and future healthcare professionals recognize the serious and enduring consequences that microaggressions can have on their patients. Finally, it introduces actionable strategies for healthcare professionals to reduce microaggressions in their practices and institutions.Microaggressions in Medicine argues that healthcare professionals have a moral obligation to prevent microaggressions as much as possible. It aims to make a positive difference in the lives of marginalized patients as they interact with medical practitioners and institutions. It also aims to support healthcare professionals in modifying their practices to ensure that they are always providing high-quality, patient-centered care to all patients. Its ultimate goal is to help increase health equity.More specifically, the book has two broad goals: one theoretical, one practical. The theoretical goal is to reconceptualize how microaggressions have been understood in the literature and to develop this new account within medical contexts. The practical goal is to provide healthcare professionals with a greater understanding of the serious and enduring consequences that microaggressions can have on members of marginalized patient groups and to introduce strategies and tools to help healthcare professionals reduce microaggressions experienced [End Page 142] by patients, thereby diminishing harm caused to patients. To set the context for the critical responses to follow, we briefly summarize each chapter of the book, highlighting the main arguments and novel contributions.Microaggressions can be defined as actions, gestures, or even material environments that subtly and often unintentionally harm members of marginalized groups. They are prevalent in medicine yet often go unnoticed by those who commit them. The introduction outlines the main problem with which the book engages: that there are subtle things that healthcare professionals commonly say and do to patients that do not register as serious to them yet that often cause major harms to patients in the short and long term. To set the stage to unpack this problem, we define what microaggressions are, provide examples of microaggressions in medical contexts, outline the aims and goals of the book, and explain key concepts (e.g., intersectionality, harm, structural oppression) that are necessary for understanding and engaging with the book's arguments. The introduction makes clear how and why a discussion of microaggressions in medicine is valuable to marginalized patients who want to better understand their own experiences interacting with healthcare professionals and institutions. It also underscores the book's value for healthcare professionals who want to improve their clinical interactions with marginalized patients and strategize about how to make their practices more inclusive, welcoming, and just.Chapter 1, "Microaggressions: A Brief History," provides a history of microaggressions. The term was coined in 1970 by a Black Harvard psychologist, Chester Pierce, to describe the "subtle blows" experienced by Black people that are not major or explicit yet that cause real harm. Although little was written about microaggressions for almost four decades, microaggressions gained traction in 2007 through the work of psychologist Derald Sue and his colleagues. We discuss Sue et al.'s work on microaggressions, tracing key revisions and developments the concept has undergone in the last fifteen years. The chapter also summarizes some of the main criticisms that have been launched against microaggressions and considers responses that have been offered. This chapter provides the groundwork for chapter 2, which lays out our novel critique of the dominant understanding of microaggressions. It also motivates our reconceptualization of microaggressions that unfolds over the remainder of the book.Chapter 2, "Microaggressions Reconsidered: A Critique of the Act-Based... (shrink)

This is the first in an annual series of volumes of medical law and ethics based on lectures given at the Centre of Medical Law and Ethics, King's College, London. The contributors, who come from a wide range of disciplines and represent diverse interests, review important issues in the forefront of recent controversy, relating particularly to artificially assisted reproduction and to the Gillick judgement. It is hoped that their essays will stimulate reflection and debate on the ethical and legal issues (...) that surround contemporary medical practice and will inaugurate a series that will come to be viewed as an important source of comment. (shrink)

BackgroundBioethics can play an important role in addressing diversity both in and outside of academia, setting precedents for meaningful contributions to public discourse, research, teaching, training, and policy development. However, in order to do so, these conversations also need to reflect on the issue of diversity within the field of bioethics across the globe. This study aims to examine current gender representation and diversity at medical ethics and humanities institutes in Germany, the German-speaking areas of Switzerland, and (...) Austria.MethodsA total of forty-nine medical ethics and humanities institutes from Germany (n=42), the German-speaking areas of Switzerland (n=5), and Austria (n=2) were included in the study. Institutes websites were reviewed in the first week of March 2021 and the details of each staff member listed on the website recorded.ResultsOverall, a total of 964 staff members were identified at the forty-nine German-speaking medical ethics and humanities institutes. Just over half (530/964; 55%) of all staff were female. There were significant differences between gender in some staff positions: 64.6 per cent (31/48) of directors were male (χ2(1)=4.1, P=.04); 62.7 per cent (84/134) of student assistants were female (χ2(1)=8.6, P=.003); and 83.7 per cent (77/92) of administrative staff were female (χ2(1)=41.8, P<.001). There were no significant differences between staff gender for researchers and lecturers, or associated researchers. In addition, 65.5 per cent (19/29) of researchers and lecturers who had a professor title were male, but the difference between genders was not found to be significant. However, significantly more of the researchers and lecturers who had completed a habilitation were male (75.8% (25/33); χ2(1)=8.8, P=.003). When comparing the institute director’s gender presentation with staff gender presentation, it was found that male-led institutes had 53.4 per cent (286/536) female staff overall but had 52.7 per cent (136/258) male researchers and lecturers. However, the difference between genders were not found to be significant. On the other hand, female-led institutes had significantly more female staff overall (59.9% (223/372); χ2(1)=14.7, P<.001) and also significantly more female researchers and lecturers (58.9% (119/202; χ2(1)=6.4, P=.01).ConclusionsThere has been a significant push to address gender diversity in German-speaking academia, and this study finds overall good gender parity in medical ethics and humanities institutes. However, there has not been a similar openness to discussing issues of systemic racism or how other forms of inequality affect academic diversity. Taking diversity seriously requires opening up conversations around intersectionality, including difficult conversations around race and cultural background that have long been taboo in German-speaking countries. (shrink)

Gender-medicine has been very successful in discovering gaps in medical knowledge, disclosing biases in earlier research, and generating new results. It has superseded a more androcentric and sexist medicine. Yet, its development should not be understood in terms of a further approximation of value-freedom. Rather, it is a case of better value-laden science due to an enhanced pluralism in medicine and society. This interpretation is based on an account of the origins of gender-medicine in the feminist (...) women’s health movement and an analysis of the debate on inclusion of women in clinical trials. Consequently, the history of gender-medicine provides support for a procedural account of objectivity that stresses the importance of a diversity of perspectives. (shrink)

Phenomenology is a useful methodology for describing and ordering experience. As such, phenomenology can be specifically applied to the first person experience of illness in order to illuminate this experience and enable health care providers to enhance their understanding of it. However, this approach has been underutilized in the philosophy of medicine as well as in medical training and practice. This paper demonstrates the usefulness of phenomenology to clinical medicine. In order to describe the experience of illness, we (...) need a phenomenological approach that gives the body a central role and acknowledges the primacy of perception. I present such a phenomenological method and show how it could usefully illuminate the experience of illness through a set of concepts taken from Merleau-Ponty. His distinction between the biological body and the body as lived, analysis of the habitual body, and the notions of motor intentionality and intentional arc are used to capture the experience of illness. I then discuss the applications this approach could have in medicine. These include narrowing the gap between objective assessments of well-being in illness and subjective experiences which are varied and diverse; developing a more attuned dialogue between physicians and patients based on a thick understanding of illness; developing research methods that are informed by phenomenology and thus go beyond existing qualitative methods; and providing medical staff with a concrete understanding of the impact of illness on the life-world of patients. (shrink)

Serious ethical violations in medicine, such as sexual abuse, criminal prescribing of opioids, and unnecessary surgeries, directly harm patients and undermine trust in the profession of medicine. We review the literature on violations in medicine and present an analysis of 280 cases. Nearly all cases involved repeated instances of intentional wrongdoing, by males in nonacademic medical settings, with oversight problems and a selfish motive such as financial gain or sex. More than half of cases involved a wrongdoer (...) with a suspected personality disorder or substance use disorder. Despite clear patterns, no factors provide readily observable red flags, making prevention difficult. Early identification and intervention in cases requires significant policy shifts that prioritize the safety of patients over physician interests in privacy, fair processes, and proportionate disciplinary actions. We explore a series of 10 questions regarding policy, oversight, discipline, and education options. Satisfactory answers to these questions will require input from diverse stakeholders to help society negotiate effective and ethically balanced solutions. (shrink)

This fellowship project addressed the need to increase diversity in public health law. Non-traditional delivery methods of education, such as synchronous online classes and offering courses during an intersession between regular semesters and in the evenings, expanded the opportunities for diverse students to learn about the field and have meaningful internship experiences in public health law. Synchronous distance education is the wave of the future for law teaching and has particular significance in the teaching of public health law.

The field of bioethics continues to struggle with the problem of cultural diversity: can universal principles guide ethical decision making, regardless of the culture in which those decisions take place? Or should bioethical principles be derived from the moral traditions of local cultures? Ten Have and Gordijn and Bracanovic defend the universalist position, arguing that respect for cultural diversity in matters ethical will lead to a dangerous cultural relativity where vulnerable patients and research subjects will be harmed. We (...) challenge the premises of moral universalism, showing how this approach imports and imposes moral notions of Western society and leads to harm in non-western cultures. (shrink)

Professional, Ethical, Legal, and Educational Lessons in Medicine: A Problem Based Approach provides a comprehensive review of the complex and challenging field of professional medical practice. Its problem-based format incorporates a vast pool of practical, board-exam-style multiple-choice questions for self-assessment, and is an ideal resource for exam preparation as well as ongoing clinical education among trainees and clinicians The practice of medicine is not only about clinical care of patients. Physicians must navigate ethical conundrums, legal pitfalls, and quality (...) improvement issues while maintaining scrupulous professionalism and being exemplary educators. This volume addresses common issues in the realm of professional medical practice not typically covered in other texts. Each of the 73 chapters presents a problem-based case that branches out into an oral board examination type stem questions. A discussion section with brief review articles summarizes the most recent literature. Multiple-choice questions with answers allows for comprehensive self-assessment or interactive group quizzes. This book will appeal to medical and allied health professionals in all specialties of medicine. It is an excellent and hands-on reference for the related but diverse domains associated with professional healthcare practice by students, physicians, and other healthcare providers compacted into one volume. (shrink)

Ruth Macklin's new book, AgainstRelativism, says in its subtitle that it intends to address cultural diversity and the search for ethical universals in medicine. This it does very well. Every chapter includes some discussion of cultural relativism, cultural anthropology, or postmodernism, and her analyses are acute and scathing. Macklin is unabashed in her defense of the principles of medical ethics, and she gives a strong argument that principles are essential elements of any ethical system that is to successfully (...) survive the skeptical doubts of relativism. (shrink)

Traditional medical Artificial Intelligence models, approved for clinical use, restrict themselves to single-modal data e.g. images only, limiting their applicability in the complex, multimodal environment of medical diagnosis and treatment. Multimodal Transformer Models in healthcare can effectively process and interpret diverse data forms such as text, images, and structured data. They have demonstrated impressive performance on standard benchmarks like USLME question banks and continue to improve with scale. However, the adoption of these advanced AI models is not without challenges. While (...) multimodal deep learning models like Transformers offer promising advancements in healthcare, their integration requires careful consideration of the accompanying ethical and environmental challenges. (shrink)

In contemporary debates about the nature of bioethics there is a widespread view that bioethical decision making should involve certain knowledge of and respect for cultural diversity of persons to be affected. The aim of this article is to show that this view is untenable and misleading. It is argued that introducing the idea of respect for cultural diversity into bioethics encounters a series of conceptual and empirical constraints. While acknowledging that cultural diversity is something that decision (...) makers in bioethical contexts should try to understand and, when possible, respect, it is argued that this cultural turn ignores the typically normative role of bioethics and thus threatens to undermine its very foundations. (shrink)

The existing philosophical views on what is the meaning of causality adequate to medicine are vastly divided. We approach this question and offer two arguments in favor of pluralism regarding concepts of causality. First, we analyze the three main types of research designs (randomized-controlled trials, observational epidemiology and laboratory research). We argue, using examples, that they allow for making causal conclusions that are best understood differently in each case (in agreement with a version of manipulationist, probabilistic and mechanistic definitions, (...) respectively). Second, we analyze clinical practice and argue that these manipulationist, probabilistic and mechanistic causal claims can be used as evidence for different therapeutic decisions. We differentiate among ‘predicting’ that does not change the relata of causal claims, (mechanistic) ‘interferences’, and ‘interventions’ in the strict sense that act on causes to change effects. The central conclusion is that causal claims agreeing with diverse concepts of causality can deliver evidence for different types of therapeutic decisions. (shrink)

Some health-care professionals refuse to perform certain services because doing so would violate their conscientiously held beliefs. Arguments for and against their accommodation claims continue both in the public square and in the courts, as well as in bioethics. This chapter introduces this debate by discussing jurisdictions in which accommodation is granted. We offer evidence of the detrimental effects it has on access to health-care services. An overview of influential ethical arguments for and against conscientious objection accommodation, including but not (...) limited to the incompatibility thesis and the moral integrity defense, is presented. We conclude with a discussion of arguments based on the values of diversity and equality of opportunity. (shrink)

Public and academic medical ethics debates surrounding justice and age discrimination often proceed from a problematic understanding of old age that ignores the diversity of older people. This article introduces the feminist perspective of intersectionality to medical ethical debates on aging and old age in order to analyze the structural discrimination of older people in medicine and health care. While current intersectional approaches in this field focus on race, gender, and sexuality, we thus set out to introduce aging (...) and old age as an additional category that is becoming more relevant in the context of longer life expectancies and increasing population aging. We analyze three exemplary cases on the individual, institutional, and public health level, and argue that considering the intersections of old age with other social categories helps to accommodate the diverse identities of older people and detect inequality and structural discrimination. (shrink)

Debates over health care have focused for so long on economics that the proper goals for medicine seem to be taken for granted; yet problems in health care stem as much from a lack of agreement about the goals and priorities of medicine as from the way systems function. This book asks basic questions about the purposes and ends of medicine and shows that the answers have practical implications for future health care delivery, medical research, and the (...) education of medical students. The Hastings Center coordinated teams of physicians, nurses, public health experts, philosophers, theologians, politicians, health care administrators, social workers, and lawyers in fourteen countries to explore these issues. In this volume, they articulate four basic goals of medicine — prevention of disease, relief of suffering, care of the ill, and avoidance of premature death — and examine them in light of the cultural, political, and economic pressures under which medicine functions. In reporting these findings, the contributors touch on a wide range of diverse issues such as genetic technology, Chinese medicine, care of the elderly, and prevention and public health. The Goals of Medicine clearly demonstrates the importance of clarifying the purposes of medicine before attempting to change the economic and organizational systems. It warns that without such examination, any reform efforts may be fruitless. (shrink)

Diversity is important for the resilience of food systems, as well as for its own sake. Just how diverse are the systems that produce our food? I explore this question with a focus on wheat and bread and North America, and even more specifically in baking, milling and farming. Although the opacity of food and agricultural systems makes definitive answers difficult, these segments appear to be increasingly uniform with respect to ownership, geography, varieties and genes. There are also important (...) countertrends, and while efforts to resist uniformity are currently small, they are making some progress in maintaining or even increasing diversity in some areas. (shrink)

The aim of this paper is to situate Addison’s aesthetics within the diverse, transdisciplinary aesthetic communication of the early eighteenth century, through which the new anthropology of sensibility took shape. Like many of his contemporaries, Addison draws on the medico-physiological literature of his time. Aesthetic pleasure is explained as consisting in or being produced by neurophysiological processes described in terms of iatromechanism and animal spirit physiology. These processes, he argues, are beneficial to the health and well-being of the human body (...) and mind, and can prevent and even cure mental diseases such as melancholy, which were thought to be caused by the disordered movement of the animal spirits. This means that aesthetic pleasure functions as a kind of therapeutic in Addison’s aesthetics. A comparison with his essays on therapeutic somatic practices reveals that Addison describes the neurophysiological processes involved in aesthetic pleasure in much the same way as those involved in physical exercise. When he refers to the pleasures of the imagination as “gentle exercise” (Spectator 411), Addison is drawing on the medico-physiological literature on exercise, especially Francis Fuller’s Medicina Gymnastica. For Addison, both physical exercise and the “gentle exercise” offered by aesthetic pleasure share the same normative goal: a “cheerful” mind, i.e. the lively movement and the proper distribution of animal spirits. Exercise, both physical and aesthetic, can achieve this by rearranging the movement of the animal spirits: exercise distracts the solitary, constricted and inert melancholic mind, releases the animal spirits from their confused and disordered movements by communicating to them a Motion contrary to theirs. In a way, both physical exercise and aesthetic pleasure re-connect or synchronise us with our environment: they lead the melancholic mind back to the beauty, novelty and greatness of nature, the delights of social life and the bounties of the providential order itself. For Addison, cheerfulness is much more than optimal neurophysiological functioning: it is a virtuous, sociable and pious “habit of mind” (Spectator 387) that makes us feel at home in our natural, social and providential world. Thus, due to its medical and physiological underpinnings, Addison’s aesthetics takes its place in the tradition of the “care of the self”, still reverberating in the eighteenth century, fusing medicine, aesthetics, morality and piety in the normative goal of the Addisonian quest for self-transformation: cheerfulness. (shrink)

In this article, I draw on my fieldwork creating protein models of hepatitis B at a biotech laboratory to think through how to approach the body and disease from ontological and phenomenological perspectives. I subsequently draw on Mariella Pandolfi’s work on how bodies can be made to suffer history and Paul Farmer’s work on global tuberculosis disparities to explore ways of analysing embodied activity as a means of identifying and clinically addressing enactments of social inequality and disease. I also introduce (...) Merleau-Ponty’s phenomenological concept of ‘flesh’ as a conceptual heuristic that allows us to understand the meaningful structuring of ontological worlds beyond our own. As I argue, bringing these perspectives together not only allows us to re-envision what an effective disease treatment should be in diverse medical contexts, but also how to better understand health disparities and the nature of disease itself. (shrink)

This is the second of the annual series on medical law and ethics, based on lectures given at the Centre for Medical Law and Ethics at King's College, London. The contributors, who come from a wide range of disciplines and represent diverse interests, review important issues in the forefront of recent controversy.

Living organ donation will soon become the source of the majority of organs donations for transplant. Should mentally handicapped people be allowed to donate, or should they be considered a vulnerable group in need of protection? I discuss three cases of possible living organ donors who are developmentally disabled, from three different cultures, the United States, Germany, and India. I offer a brief discussion of three issues raised by the cases: (1) cultural diversity and cultural relativism; (2) autonomy, rationality, (...) and self-interest; and (3) the proper use and role for clinical ethics consults. (shrink)

This article examines the legal arguments that may lead the Supreme Court to overrule precedent and strike down affirmative action in university admissions. Given the critical importance of a diverse physician workforce for our Nation’s health care system, the potential reversal of affirmative action admission programs in medical schools may have severe negative consequences. This article discusses the implications for health care should the Court issue an opinion restricting or eliminating affirmative action in higher education.

Science and emotions are typically juxtaposed: science is considered rational and unattached to outcomes, whereas emotions are considered irrational and harmful to science. Ethnographic studies of the daily lives of scientists have problematized this opposition, focusing on the emotional experiences of scientists as they go about their work, but they reveal little about disciplinary differences. We build on these studies by analyzing Citation Classics: accounts about the making of influential science. We document how highly cited scientists retrospectively describe emotional aspects (...) of their research and assess variation in these narratives across six diverse disciplines: Chemistry; Clinical Medicine; Neurobiology; Physics; Plant and Animal Science; and Psychology and Psychiatry. Using correspondence analysis, we develop a multidimensional model to explain disciplinary variation in scientists’ accounts of emotions and link this variation to internal, external, and material aspects of the disciplines. We find differences in norms of appropriate emotional expression, or “feeling rules,” between the “hard” and “soft” sciences, the basic and applied sciences, and the sciences that study living organisms versus those that study organs, cells, or atoms. By comparing accounts across disciplines and elaborating the structuring principles underlying these patterns, we integrate knowledge from varied case studies into an integrative and multifaceted model. (shrink)

Background Increasing social pluralism adds to the already existing variety of heterogeneous moral perspectives on good care, health, and quality of life. Pluralism in social identities is also connected to health and care disparities for minoritized patient (i.e. care receiver) populations, and to specific diversity-related moral challenges of healthcare professionals and organizations that aim to deliver diversity-responsive care in an inclusive work environment. Clinical ethics support (CES) services and instruments may help with adequately responding to these diversity-related (...) moral challenges. However, although various CES instruments exist to support healthcare professionals with dealing well with morally challenging situations in healthcare, current tools do not address challenges specifically related to moral pluralism and intersectional aspects of diversity and social justice issues. This article describes the content and developmental process of a novel CES instrument called the Diversity Compass. This instrument was designed with and for healthcare professionals to dialogically address and reflect on moral challenges related to intersectional aspects of diversity and social justice issues that they experience in daily practice. Methods We used a participatory development design to develop the Diversity Compass at a large long-term care organization in a major city in the Netherlands. Over a period of thirteen months, we conducted seven focus groups with healthcare professionals and peer-experts, carried out five expert interviews, and facilitated four meetings with a community of practice consisting of various healthcare professionals who developed and tested preliminary versions of the instrument throughout three cycles of iterative co-creation. Results The Diversity Compass is a practical, dialogical CES instrument that is designed as a small booklet and includes an eight-step deliberation method, as well as a guideline with seven recommendations to support professionals with engaging in dialogue when they are confronted with diversity-related moral challenges. The seven recommendations are key components in working toward creating an inclusive and safe space for dialogue to occur. Conclusions The Diversity Compass seeks to support healthcare professionals and organizations in their efforts to facilitate awareness, moral learning and joint reflection on moral challenges related to diversity and social justice issues. It is the first dialogical CES instrument that specifically acknowledges the role of social location in shaping moral perspectives or experiences with systemic injustices. However, to make healthcare more just, an instrument like the Diversity Compass is not enough on its own. In addition to the Diversity Compass, a systemic and structural approach to social justice issues in healthcare organizations is needed in order to foster a more inclusive, safe and diversity-responsive care and work environment in health care organizations. (shrink)

As physicians encounter an increasingly diverse patient population, socioeconomic circumstances, religious values and cultural practices may present barriers to the delivery of quality care. Increasing cultural competence is often cited as a way to reduce healthcare disparities arising from value and cultural differences between patients and providers. Cultural competence entails not only a knowledge base of cultural practices of disparate patient populations, but also an attitude of adapting one's practice style to meet patient needs and values. Gender roles, relationship dynamics (...) and boundaries are culture specific, and are frequently shaped by religious teachings. Consequently, religion may be conceptualised as a cultural repertoire, or dynamic tool-kit, by which members of a faith adapt and negotiate their identity in multicultural societies. The manner in which Islamic beliefs and values inform Muslim healthcare behaviours is relatively under-investigated. In an effort to explore the impact of Islam on the relationship between patients and providers, we present an Islamic bioethical perspective on cross-gender relations in the patient-doctor relationship. We will begin with a clinical scenario highlighting three areas of gender interaction that bear clinical relevance: dress code, seclusion of members of the opposite sex and physical contact. Next, we provide a brief overview of the foundations of Islamic law and ethical deliberation and then proceed to develop ethicolegal guidelines pertaining to gender relations within the medical context. At the end of this reflection, we offer some practice recommendations that are attuned to the cultural sensitivities of Muslim patient populations. (shrink)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating (...) to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

As physicians encounter an increasingly diverse patient population, socioeconomic circumstances, religious values and cultural practices may present barriers to the delivery of quality care. Increasing cultural competence is often cited as a way to reduce healthcare disparities arising from value and cultural differences between patients and providers. Cultural competence entails not only a knowledge base of cultural practices of disparate patient populations, but also an attitude of adapting one's practice style to meet patient needs and values. Gender roles, relationship dynamics (...) and boundaries are culture specific, and are frequently shaped by religious teachings. Consequently, religion may be conceptualised as a cultural repertoire, or dynamic tool-kit, by which members of a faith adapt and negotiate their identity in multicultural societies. The manner in which Islamic beliefs and values inform Muslim healthcare behaviours is relatively under-investigated. In an effort to explore the impact of Islam on the relationship between patients and providers, we present an Islamic bioethical perspective on cross-gender relations in the patient-doctor relationship. We will begin with a clinical scenario highlighting three areas of gender interaction that bear clinical relevance: dress code, seclusion of members of the opposite sex and physical contact. Next, we provide a brief overview of the foundations of Islamic law and ethical deliberation and then proceed to develop ethicolegal guidelines pertaining to gender relations within the medical context. At the end of this reflection, we offer some practice recommendations that are attuned to the cultural sensitivities of Muslim patient populations. (shrink)

Fulford has argued that (1) the medical concepts illness, disease and dysfunction are inescapably evaluative terms, (2) illness is conceptually prior to disease, and (3) a model conforming to (2) has greater explanatory power and practical utility than the conventional value-free medical model. This ‘reverse’ model employs Hare's distinction between description and evaluation, and the sliding relationship between descriptive and evaluative meaning. Fulford's derivative ‘Values Based Medicine’ (VBM) readjusts the imbalance between the predominance of facts over values in (...) class='Hi'>medicine. VBM allegedly responds to the increased choices made available by, inter alia, the progress of medical science itself. VBM attributes appropriate status to evaluative meaning, where strong consensus about descriptive meaning is lacking. According to Fulford, quasi-legal bioethics, while it can be retained as a kind of deliberative framework, is outcome-based and pursues ‘the right answer’, while VBM approximates a democratic, process-oriented method for dealing with diverse values, in partnership with necessary contributions from evidence-based medicine (EBM). I support the non-cognitivist underpinnings of VBM, and its emphasis on the importance of values in medicine. But VBM overstates the complexity and diversity of values, misrepresents EBM and VBM as responses to scientific and evaluative complexity, and mistakenly depicts ‘quasi-legal bioethics’ as a space of settled descriptive meaning. Bioethical reasoning can expose strategies that attempt to reduce authentic values to scientific facts, illustrating that VBM provides no advantage over bioethics in delineating the connections between facts and values in medicine. (shrink)

Newborn infants are among those most severely affected by humanitarian crises. Aid organisations increasingly recognise the necessity to provide for the medical needs of newborns, however, this may generate distinctive ethical questions for those providing humanitarian medical care. Medical ethical approaches to neonatal care familiar in other settings may not be appropriate given the diversity and volatility of humanitarian disasters, and the extreme resource limitations commonly faced by humanitarian aid missions.In this paper, we first systematically review existing guidelines relating (...) to the treatment and resuscitation of newborns in humanitarian crises, finding little substantive ethical guidance for those providing humanitarian healthcare. We next draw on paradigm cases and published literature to identify and describe some of the major ethical questions common to these settings. We divide these questions into quality of life considerations, allocation of limited resources, and conflicting cultural norms and values. We finally suggest some preliminary recommendations to guide ethical decision‐making around resuscitation of newborns and withdrawal of treatment in humanitarian settings. (shrink)

Background In the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal.Methods Using interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for.Results We find that ad hoc, opportunistic, and instrumental approaches to CE exacted (...) significant consequences for the time and resources devoted to engagement and the ultimate impacts it has on research. Critical differences emerged when engagement and research decisionmaking were integrated with each other versus occurring in parallel, separate parts of the study organization, and whether community members had the ability to determine which issues would be brought to them for consideration or to revise or even veto proposals made upstream based on criteria that mattered to them. CE was understood to have a range of purposes, from instrumentally facilitating recruitment and data collection, to advancing community priorities and concerns, to furthering long-term investments in relationships with and changes in communities. These choices about who to engage, what engagement activities to support, how to solicit and integrate community input into the workflow of the study, and what CE was for were often conditioned upon preexisting perceptions and upstream decisions about study goals, competing priorities, and resource availability.Conclusions Upstream choices about CE and constraints of time and resources cascade into tradeoffs that often culminated in “pantomime community engagement.” This approach can create downstream costs when engagement is experienced as improvised and sporadic. Transformations are needed for CE to be seen as a necessary scientific investment and part of the scientific process. (shrink)

With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. (...) Drawing on these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: Address the role of history and experience on trust, engage concerns about potential group harm, address cultural values and communication barriers, and integrate patient values and expectations into oversight and governance structures. (shrink)

In an attempt to promote in-depth dialogue amongst bioethicists coming from distinct disciplinary and religious backgrounds this essay offers a critical analysis of a number of the leading methods of addressing pluralism in bioethics and. Exploring the critiques and methodological proposals coming from the social sciences, the contract theorists, and the pragmatists, this study describes the problems which arise when confronting moral diversity in a bioethical context and examines the ability of these various methodologies to adequately resolve these matters. (...) Finally, the foundations of a new conceptual framework for bioethical methodology will be developed. It will be argued that these new methodological insights are able to overcome the problems facing other methodologies and may provide a viable means for adequately addressing issues of pluralism in bioethics. (shrink)

Indigenous Zuni farming, including cultural values, ecological and biological diversity, and land distribution and tenure, appears to have been quite productive and sustainable for at least 2000 before United States influence began in the later half of the 18th century. United States Government Indian agriculture policy has been based on assimilation of Indians and taking of their resources, and continues in more subtle ways today. At Zuni this policy has resulted in the degradation and loss of natural resources for (...) farming, reduction in the number of Zuni farmers and their control over farming resources, individualization of rights in farmland, consolidation of farm fields, and declining biological diversity in agriculture. The Zuni Sustainable Agriculture Project with the Zuni Irrigation Association and the Zuni community, are now working to revitalize sustainable Zuni farming, based on traditional values, knowledge, and technology, combined with modern knowledge and technology where appropriate. The United States government can support these efforts through appreciation of the need for Zuni control and the potential value of cultural and biological diversity. (shrink)

The goal of the Human Genome Diversity Project (HGDP) was to reconstruct the history of human evolution and the historical and geographical distribution of populations with the help of scientific research. Through this kind of research, the entire spectrum of genetic diversity to be found in the human species was to be explored with the hope of generating a better understanding of the history of humankind. An important part of this genome diversity research consists in taking blood (...) and tissue samples from indigenous populations. For various reasons, it has not been possible to execute this project in the planned scope and form to date. Nevertheless, genomic diversity research addresses complex issues which prove to be highly relevant from the perspective of research ethics, transcultural medical ethics, and cultural philosophy. In the article at hand, we discuss these ethical issues as illustrated by the HGDP. This investigation focuses on the confrontation of culturally diverse images of humans and their cosmologies within the framework of genome diversity research and the ethical questions it raises. We argue that in addition to complex questions pertaining to research ethics such as informed consent and autonomy of probands, genome diversity research also has a cultural–philosophical, meta-ethical, and phenomenological dimension which must be taken into account in ethical discourses. Acknowledging this fact, we attempt to show the limits of current guidelines used in international genome diversity studies, following this up by a formulation of theses designed to facilitate an appropriate inquiry and ethical evaluation of intercultural dimensions of genome research. (shrink)

This issue of The Journal of Medicine and Philosophy assesses the deep and abiding tensions that exist among the competing epistemic perspectives that bear on medicine and morality. Concepts of health and disease, as well as the theoretical framing of medical ethics and health care policy, intersect with an overlapping set of culturally situated communities, striving to understand and manipulate the world in ways that each finds explanatory, appropriate, or otherwise befitting. The articles explore the complexities of framing (...) public health care policy to guide bioethical decision making in the face of the plurality of ethical viewpoints and moral rationalities—including health enhancing supplements, continuous sedation until death, medical futility, the protection of vulnerable populations, and competing professional obligations. (shrink)

Background Over the last decade, the return of results (ROR) in precision medicine research (PMR) has become increasingly routine. Calls for individual rights to research results have extended the “duty to report” from clinically useful genetic information to traits and ancestry results. ROR has thus been reframed as inherently beneficial to research participants, without a needed focus on who benefits and how. This paper addresses this gap, particularly in the context of PMR aimed at increasing participant diversity, by (...) providing investigator and researcher perspectives on and questions about the assumed value of ROR in PMR.Methods Semi-structured interviews with a purposive sample of investigators and researchers across federally funded PMR studies in three national consortia, as well as observations of study activities, focused on how PM researchers conceptualize diversity and implement inclusive practices across research stages, including navigating ROR.Results Interviewees (1) validated the value of ROR as a benefit of PMR, while others (2) questioned the benefit of clinically actionable results to individuals in the absence of sufficient resources for translating findings into health care for diverse and disadvantaged populations; (3) expressed uncertainties in applying the presumed value of ROR as a benefit for non-clinical results; and (4) and debated when the promise of the value of ROR may undermine trust in PMR, and divert efforts to return value beyond ROR.Conclusions Conceptualizations of diversity and inclusion among PM researchers and investigators raise unique ethical questions where unexamined assumptions of the value of ROR inform study recruitment efforts to enroll minoritized and under-represented populations. A lack of consideration for resources and infrastructure necessary to translate ROR into actionable information may hinder trustworthy community-research relationships. Thus, we argue for a more intentional interrogation of ROR practices as an offer of benefit and for whom. (shrink)

In this paper, we describe the spiritual and kinship alliances between heads of an urban Santo Daime church from Rio de Janeiro and some leaders of the Yawanawá people from the Amazonian region. We suggest that these alliances involve exchanges and dialogical relationships that hold different meanings for the diverse social actors that take part in them. Further, we argue that equivocation and functional misunderstandings have an important role in these multidirectional dialogues. Based on this case study, we approach the (...) Yawanawá strategies for capturing otherness, and the insertion of the daimistas in the indigenous sociality networks. We focus especially on the Yawanawá mode of producing kin by capturing non-indigenous people and their participation in exchange networks that encompass multiple regimes of value. From the daimista point of view, we describe these relationships using the native category of “eclecticism.” We suggest that the daimistas attempt to translate the Yawanawá shamanic knowledge and the consumption of the “forest medicines,” experiencing the performance of “becoming indigenous.”. (shrink)

In this paper, we describe the spiritual and kinship alliances between heads of an urban Santo Daime church from Rio de Janeiro and some leaders of the Yawanawá people from the Amazonian region. We suggest that these alliances involve exchanges and dialogical relationships that hold different meanings for the diverse social actors that take part in them. Further, we argue that equivocation and functional misunderstandings have an important role in these multidirectional dialogues. Based on this case study, we approach the (...) Yawanawá strategies for capturing otherness, and the insertion of the daimistas in the indigenous sociality networks. We focus especially on the Yawanawá mode of producing kin by capturing non‐indigenous people and their participation in exchange networks that encompass multiple regimes of value. From the daimista point of view, we describe these relationships using the native category of “eclecticism.” We suggest that the daimistas attempt to translate the Yawanawá shamanic knowledge and the consumption of the “forest medicines,” experiencing the performance of “becoming indigenous.”. (shrink)