We concur with Baum and colleagues (2009) on the importance of pandemic planners taking explicit steps to employ public engagement methodologies. Thus far, as Baum and colleagues note, there have b...

The social sciences playa variety of multifaceted roles in the policymaking process. So varied are these roles, indeed, that it is futile to talk in the singular about the use of social science in policymaking, as if there were one constant relationship between two fixed and stable entities. Instead, to address this issue sensibly one must talk in the plural about uses of dif ferent modes of social scientific inquiry for different kinds of policies under various circumstances. (...) In some cases, the influence of social scientific research is direct and tangible, and the connection between the find ings and the policy is easy to see. In other cases, perhaps most, its influence is indirect-one small piece in a larger mosaic of politics, bargaining, and compromise. Occasionally the findings of social scientific studies are explicitly drawn upon by policymakers in the formation, implementation, or evaluation of particular policies. More often, the categories and theoretical models of social science provide a general background orientation within which policymakers concep tualize problems and frame policy options. At times, the in fluence of social scientific work is cognitive and informational in nature; in other instances, policymakers use social science primarily for symbolic and political purposes in order to le gitimate preestablished goals and strategies. Nonetheless, amid this diversity and variety, troubling general questions persistently arise. (shrink)

The rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.

Recent global events demonstrate that analytical frameworks to aid professionals in healthcare ethics must consider the pervasive role of social structures in the emergence of bioethical issues. To address this, the authors propose a new sociologically informed approach to healthcare ethics that they term “social bioethics.” Their approach is animated by the interpretive social sciences to highlight how social structures operate vis-à-vis the everyday practices and moral reasoning of individuals, a phenomenon known as social (...) discourse. As an exemplar, the authors use social bioethics to reframe common ethical issues in psychiatric services and discuss potential implications. Lastly, the authors discuss how social bioethics illuminates the ways healthcare ethics consultants in both policy and clinical decision-making participate in and shape broader social, political, and economic systems, which then cyclically informs the design and delivery of healthcare. (shrink)

Yet these forces are largely ignored by a professional bioethics that concentrates on the theoretical justification of decisions.The original essays in this ...

In this article we address the social value of bioethics research and show how a participatory approach can achieve social impact for a wide audience of stakeholders, involving them in a process of joint moral learning. Participatory bioethics recognizes that research co-produced with stakeholders is more likely to have impact on healthcare practice. These approaches aim to engage multiple stakeholders and interested partners throughout the whole research process, including the framing of ideas and research questions, so (...) that outcomes are tailored to the interests and context, and the type of impact stakeholders envisage. There is an emphasis on realizing social change through the conduct of the research, and it is believed that the engagement of stakeholders in the research process will promote their intrinsic motivation to change their practice. Another distinctive feature of participatory bioethics research is that its central normative commitment is to reflection and dialogue, not to a particular substantive ethical approach. In reflection and dialogue there is an emphasis on inclusion and the co-production of knowledge. Furthermore, empirical and normative research are combined, and there is a deliberate attempt to give voice to otherwise marginalized positions. This provides a model of social impact which is relevant not only for bioethics research, but also for other areas of health care research. We will show the merits of a participatory approach to bioethics research with a case example. It concerns the reduction of coercion and in particular seclusion in Dutch mental healthcare. (shrink)

Matteo Laspro et al. (2024) provide a thought-provoking review of the ethical issues surrounding Whole-Eye Transplantation (WET). In this commentary, we expand on three of the concerns they raise i...

The new phase of science evolution is characterized by totality of subject and object of cognition and technology (high-hume). As a result, forming of network structure in a disciplinary matrix modern are «human dimensional» natural sciences and two paradigmal «nuclei» (attraktors). As a result, the complication of structure of disciplinary matrix and forming a few paradigm nuclei in modern «human dimensional» natural sciences are observed. In the process of social verification integration of scientific theories into the existent system of (...) mental and valued options of spiritual culture takes place. The attribute of classical science – ethics neutrality of scientific knowledge becomes an unattainable ideal. One of the trends in the evolution of theoretical epistemology is the study of migration mechanisms of generation of scientific knowledge from the sphere of its own logic and methodology of science in the field of sociology - the consideration of this process, as the resulting system of interactions of social structures and institutions. Ensuing ideas and settings become the dominant worldview of philosophical and technological civilization. -/- . (shrink)

The author argues that bioethics ought properly to be regarded "both" as a consulting profession that counsels health practitioners in dealing with the individual problems they face "and" as an academic discipline that defines problem areas on its own and includes attention to the institutional and social aspects of health care. The argument is conducted by means of a brief history of bioethics and comparison of its development with that of history of medicine and sociology of medicine. (...) Several examples of the social issues in bioethics are examined. (shrink)

This unique textbook utilizes an integrated, case-based approach to explore how the domains of bioethics, public health and the social sciences impact individual patients and populations. It provides a structured framework suitable for both educators (including course directors and others engaged in curricular design) and for medical and health professions students to use in classroom settings across a range of clinical areas and allied health professions and for independent study. The textbook opens with an introduction, describing the intersection (...) of ethics and public health in clinical practice and the six key themes that inform the book's core learning objectives, followed by a guide to using the book. It then presents 22 case studies that address a broad spectrum of patient populations, clinical settings, and disease pathologies. Each pair of cases shares a core concept in bioethics or public health, from community perspectives and end-of-life care to medical mistakes and stigma and marginalization. They engage learners in rigorous clinical and ethical reasoning by prompting readers to make choices based on available information and then providing additional information to challenge assumptions, simulating clinical decision-making. In addition to providing a unique, detailed clinical scenario, each case is presented in a consistent format, which includes learning objectives, questions and responses for self-directed learning, questions and responses for group discussion, references, and suggested further reading. All cases integrate the six themes of patient- and family-centered care; evidence-based practice; structural competency; biases in decision-making; cultural humility and awareness of the culture of medicine; and justice, social responsibility and advocacy. The final section discusses some challenges to evaluating courses and learning encounters that adopt the cases and includes a model framework for learner assessment. (shrink)

Las personas portadoras o enfermas del virus de inmunodeficiencia humana han experimentado consecuencias devastadoras en el plano personal, familiar y social desde la aparición de los primeros casos. El objetivo del presente trabajo es analizar el cumplimiento de los principios bioéticos, así como la repercusión derivada de las implicaciones éticas del actuar profesional con estos pacientes, lo cual demuestra la necesidad de vencer los tabúes y la discriminación que han sido objeto desde los inicios de la epidemia. Persons who (...) are carrier of the Acquired Immunodeficiency Syndrome or persons who are sick have experienced destructive consequences in the personal, familiar and social spheres since the appearance of the first cases. The objective of this work is to analyze the fulfilment of the bioethical principles, as well as the repercussion derived from the ethics dilemma of the professional behaviour with these patients, what demonstrate the necessity of overcoming taboos and the discrimination they have suffered from since the beginnings of the disease. (shrink)

ABSTRACT This article attempts to show a way in which social science research can contribute in a meaningful and equitable way to philosophical bioethics. It builds on the social science critique of bioethics present in the work of authors such as Renée Fox, Barry Hoffmaster and Charles Bosk, proposing the characteristics of a critical bioethics that would take social science seriously. The social science critique claims that traditional philosophical bioethics gives a dominant (...) role to idealised, rational thought, and tends to exclude social and cultural factors, relegating them to the status of irrelevancies. Another problem is the way in which bioethics assumes social reality divides down the same lines/categories as philosophical theories. Critical bioethics requires bioethicists to root their enquires in empirical research, to challenge theories using evidence, to be reflexive and to be sceptical about the claims of other bioethicists, scientists and clinicians. The aim is to produce a rigorous normative analysis of lived moral experience. (shrink)

While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of (...) a sample of ELSI publications appearing between 2003 and 2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries. (shrink)

The new phase of science evolution is characterized by totality of subject and object of cognition and technology (high-hume). As a result, forming of network structure in a disciplinary matrix modern are «human dimensional» natural sciences and two paradigmal «nuclei» (attraktors). As a result, the complication of structure of disciplinary matrix and forming a few paradigm nuclei in modern «human dimensional» natural sciences are observed. In the process of social verification integration of scientific theories into the existent system of (...) mental and valued options of spiritual culture takes place. The attribute of classical science – ethics neutrality of scientific knowledge becomes an unattainable ideal. One of the trends in the evolution of theoretical epistemology is the study of migration mechanisms of generation of scientific knowledge from the sphere of its own logic and methodology of science in the field of sociology - the consideration of this process, as the resulting system of interactions of social structures and institutions. Ensuing ideas and settings become the dominant worldview of philosophical and technological civilization. -/- . (shrink)

As part of an effort to look at for bioethicists interested in clinical decisionmaking, Erik Parens, the editor of this special section, asked us to look at social class. When we began our research for this paper, we were surprised to find that although bioethicists have written much on social class and such macrolevel issues as access to healthcare and the distribution of scarce resources, and have paid some attention to the effects of class on patient-provider relationships, bioethicists (...) have written little specifically that looks at the implications of social class for medical decisions in individual cases. (shrink)

Article 14 of the UNESCO Declaration on Bioethics and Human Rights sets forth a few basic principles regarding social responsibility for health. It states in part that 14.1 The promotion of health and social development for their people is a central purpose of governments that all sectors of society share. 14.2 Taking into account that the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, (...) religion, political belief, economic or social condition, progress in science and technology should advance: access to quality health care and essential medicines, especially for the health of women and... (shrink)

Recent years have witnessed a concern among theological bioethicists that secular debate has grown increasingly "thin," and that "thick" religious traditions and their spokespersons have been correspondingly excluded. This essay disputes that analysis. First, religious and theological voices compete for public attention and effectiveness with the equally "thick" cultural traditions of modern science and market capitalism. The distinctive contribution of religion should be to emphasize social justice in access to the benefits of health care, challenging the for-profit global marketing (...) of research and biotechnology to wealthy consumers. Second, religion and theology have been and are still socially effective in sponsoring activism for practical change, both locally and globally. This claim will be supported with specific examples; with familiar concepts like subsidiarity and "mid- dle axioms"; and with recent analyses of "participatory democracy" and of emerging, decentralized forms of global governance. (shrink)

Polemicists and disciplinary puritans commonly make a sharp distinction between the normative, “prescriptive,” philosophical work of bioethicists and the empirical, “descriptive” work of anthropologists and sociologists studying medicine, healthcare, and illness. Though few contemporary medical anthropologists and sociologists of health and illness subscribe to positivism, the legacy of positivist thought persists in some areas of the social sciences. It is still quite common for social scientists to insist that their work does not contain explicit normative analysis, offers no (...) practical recommendations for social reform or policy making, and simply interprets social worlds. (shrink)

_Bioethics, Public Moral Argument, and Social Responsibility_ explores the role of democratically oriented argument in promoting public understanding and discussion of the benefits and burdens of biotechnological progress. The contributors examine moral and policy controversies surrounding biomedical technologies and their place in American society, beginning with an examination of discourse and moral authority in democracy, and addressing a set of issues that include: dignity in health care; the social responsibilities of scientists, journalists, and scholars; and the language of (...) genetics and moral responsibility. (shrink)

This book explores the many connections that bioethical thinking has with social reality. Bioethics, if it is to be effective, must engage with and address the actualities of modern life: policies, regulations, markets, opinions, and technological advances. In these original contributions fifteen notable scholars working in the North West of England take on this challenge. The series Values in Bioethics makes available original philosophical books in all areas of bioethics, including medical and nursing ethics, health care (...) ethics, research ethics, environmental ethics, and global bioethics. (shrink)

We identify the ways the policies of leading international bioethics journals limit the participation of researchers working in the resource-constrained settings of low- and middle-income countries in the development of the field of bioethics. Lack of access to essential scholarly resources makes it extremely difficult, if not impossible, for many LMIC bioethicists to learn from, meaningfully engage in, and further contribute to the global bioethics discourse. Underrepresentation of LMIC perspectives in leading journals sustains the hegemony of Western (...) bioethics, limits the presentation of diverse moral visions of life, health, and medicine, and undermines aspirations to create a truly “global” bioethics. Limited attention to this problem indicates a lack of empathy and moral imagination on the part of bioethicists in high-income countries, raises questions about the ethics of bioethics, and highlights the urgent need to find ways to remedy this social injustice. (shrink)

The new phase of science evolution is characterized by totality of subject and object of cognition and technology (high-hume). As a result, forming of network structure in a disciplinary matrix modern are «human dimensional» natural sciences and two paradigmal «nuclei» (attraktors). As a result, the complication of structure of disciplinary matrix and forming a few paradigm nuclei in modern «human dimensional» natural sciences are observed.

Catholic health care is one of the key places where the church lives Catholic social teaching (CST). Yet the individualistic methodology of Catholic bioethics inherited from the manualist tradition has yet to incorporate this critical component of the Catholic moral tradition. Informed by the places where Catholic health care intersects with the diverse societal injustices embodied in the patients it encounters, this book brings the lens of CST to bear on Catholic health care, illuminating a new spectrum of (...) ethical issues and practical recommendations from social determinants of health, immigration, diversity and disparities, behavioral health, gender-questioning patients, and environmental and global health issues. (shrink)

BackgroundSocial media has globalised compassion enabling requests for donations to spread beyond geographical boundaries. The use of social media for medical crowdfunding links people with unmet healthcare needs to charitable donors. There is no doubt that fundraising campaigns using such platforms facilitates access to financial resources to the benefit of patients and their caregivers.Main textThis paper reports on a critical review of the published literature and information from other online resources discussing medical crowdfunding and the related ethical questions. The (...) review highlighted the benefits of crowdfunding as well as the under-exploration of the risk of having patients’ desires and human rights undermined during online fundraising campaigns. Majority of these campaigns get initiated on behalf of the patients, especially the very sick and dependant. The ethical questions raised relate to the voluntariness of informed consent and the possibility of patients being used as a means to an end. Vulnerability of patients may expose them to coercion, undue influence, manipulation, and violation of their human rights. The success of these campaigns is influenced by the digital skills, pre-existing social networks and, the emotional potency. Healthcare is a public good, and online market forces should not determine access to essential health services. The benefits of crowdfunding cannot be subverted, but it can perpetuate unintended injustices, especially those arising from socio-economic factors.ConclusionsPolicymakers ought to monitor the utilisation of crowdfunding sites to identify policy failures and unmet essential health care needs responsible for driving individuals to use these platforms. The upholding of human rights and the fundamental respect of the individual’s wishes is a moral imperative. The need for an ethics framework to guide different stakeholders during medical crowdfunding needs further examination. (shrink)

Blumenthal-Barby (2024) argues that bioethicists should stop using the concept of "personhood" in both well-established bioethics debates (e.g., regarding cognitive disability) and emerging ones (e...

Catholic health care has long been a key place where the Church embodies its social doctrine. However, the moral methodology that shapes Catholic bioethics relies on an act-based approach to decision making, which is rooted in the pre–Vatican II manualist tradition, focusing primarily on clinical issues related to the beginning and end of life. This essay argues that given the doctrinal status of Catholic social thought, Catholic bioethics must revisit its scope and methodology. It proceeds in (...) three steps: a meta-analysis of traditional Catholic bioethics, validating the claim made above; an overview of the limited literature published since 1980 engaging Catholic bioethics and CST; and a map of a Catholic bioethics informed by CST generated from a dual starting point. The essay concludes by focusing on both the places where marginalized persons encounter Catholic health care and the ethical issues presented, including race, health care disparities, immigration status, and gender inequality, as well as the interrelated perspective of the common good, expanding the array of issues to include environmental degradation, unions, health care financing, and more. (shrink)

When many people think of bioethics, they think of gripping issues in clinical medicine such as end-of-life decision-making, controversies in biomedical research such as that over work with stem cells, or issues in allocating scarce health-care resources such as organs or money. The term “bioethics” may evoke images of moral controversies being discussed on news programs and talk shows. But this “controversy of the day” focus often treats ethical issues in medicine superficially, for it addresses them as if (...) they could be examined and discussed in isolation from the context in which they are situated. Such a focus on the latest controversies fails to take into account that medicine is a social institution and that the controversies in bioethics often reflect deeper social and moral issues that transcend the boundaries of medicine and ethics. If one moves beyond the issue-of-the-day approach to bioethics, one can see that the field must address these deeper issues. (shrink)

The phenomenology of bioethics is approached here in relation to the lived experience as it relates to the everyday lifeworld of persons suffering from mental illness. Taking a road less traveled, the purpose here is to elucidate ethical issues relating to sociality, using findings from qualitative phenomenological psychological research. Qualitative studies of schizophrenia and postpartum depression serve as examples. Layered throughout is the applied phenomenological argument pointing to the importance of returning to mundane intersubjectivity and the reversibility between mental (...) illness, the existential context of suffering, and sociality. (shrink)

When many people think of bioethics, they think of gripping issues in clinical medicine such as end-of-life decision-making, controversies in biomedical research such as that over work with stem cells, or issues in allocating scarce health-care resources such as organs or money. The term “bioethics” may evoke images of moral controversies being discussed on news programs and talk shows. But this “controversy of the day” focus often treats ethical issues in medicine superficially, for it addresses them as if (...) they could be examined and discussed in isolation from the context in which they are situated. Such a focus on the latest controversies fails to take into account that medicine is a social institution and that the controversies in bioethics often reflect deeper social and moral issues that transcend the boundaries of medicine and ethics. If one moves beyond the issue-of-the-day approach to bioethics, one can see that the field must address these deeper issues. (shrink)

Background The birth plan is a tool that allows the self-learning and thoughtful analysis of the women during the birthing process, facilitating their making of decisions and participation, in agreement with the bioethical principles of autonomy and no malfeasance. Goal: To understand the perception and satisfaction of women who presented a birth plan. Methodology: Qualitative, descriptive, observational, retrospective and cross-sectional study. The population of the study was composed of 21 women who presented a birth plan regulated in a Hospital ever (...) since the recording of the presentation of the birth plan was started until 2015. Place: Cartagena. Techniques/methods: Semistructured interview. Results-Discussion: Most women considered the plan as a useful self-learning tool on the meaning of the birthing process, as it favored the communication between the expectant mothers/health professionals. Our informants sought information related to the birthing process from informal sources; most perceived a level of respect of their wishes during the process of giving birth. The use of the birth plan did not imply the perception of loss of the degree of control during the birth, although attention to the written document could be improved. Conclusions The use of the birth plan is a very satisfactory and useful experience for their involvement in their self-care, although in some cases, the births did not proceed according to their plans. Nevertheless, the prevalence of the principle of Non-Malfeasance over Autonomy was evidenced. (shrink)

In _Bioethics in Context_, Gary Jones and Joseph DeMarco connect ethical theory, medicine, and the law, guiding readers toward a practical and legally grounded understanding of key issues in health-care ethics. This book is uniquely up-to-date in its discussion of health-care law and unpacks the complex web of American policies, including the Patient Protection and Affordable Care Act. Useful case studies and examples are embedded throughout, and a companion website offers a thorough, curated database of relevant legal precedents as well (...) as additional case studies and other resources. (shrink)

In their article, Fabi and Goldberg discuss concerns of racial injustice and the continued exclusion of people—based on race—in ethics research funding allocation, and how that impacts knowl...

Last year I published a short article urging bioethicists to carefully examine the question of what ought to constitute the canonical issues topics and questions driving research and teaching in bioethics. Why some subjects dominate the field whereas other topics are regarded as matters for scholars in other disciplines is a question that has intrigued me for nearly a decade. How are the boundaries of bioethics established? What factors influence research agendas and the creation of bioethics curricula? (...) How do funding agencies, editors, and leading scholars shape the field of bioethics? These questions are increasingly receiving scrutiny from Charles Bosk, Raymond De Vries, and other researchers as they explore the sociology of bioethics and the “construction” of the “ethical enterprise.". (shrink)

Empirical bioethics is commonly understood as integrating empirical research with normative-ethical research in order to address an ethical issue. Methodological analyses in empirical bioethics mainly focus on the integration of socio-empirical sciences and normative ethics. But while there are numerous multidisciplinary research projects combining life sciences and normative ethics, there is few explicit methodological reflection on how to integrate both fields, or about the goals and rationales of such interdisciplinary cooperation. In this paper we will review some drivers (...) for the tendency of empirical bioethics methodologies to focus on the collaboration of normative ethics with particularly social sciences. Subsequently, we argue that the ends of empirical bioethics, not the empirical methods, are decisive for the question of which empirical disciplines can contribute to empirical bioethics in a meaningful way. Using already existing types of research integration as a springboard, five possible types of research which encompass life sciences and normative analysis will illustrate how such cooperation can be conceptualized from a methodological perspective within empirical bioethics. We will conclude with a reflection on the limitations and challenges of empirical bioethics research that integrates life sciences. (shrink)

In this issue, McCarthy, Homan and Rozier make the case for re-stablishing the relationship between theological and secular bioethics. I find MHR to be quite...

Bioethics represents a dramatic revision of the centuries-old professional ethics that governed the behavior of physicians and their relationships with patients. This venerable ethics code was challenged in the years after World War II by the remarkable advances in the biomedical sciences and medicine that raised questions about the definition of death, the use of life-support systems, organ transplantation, and reproductive interventions. In response, philosophers and theologians, lawyers and social scientists joined together with physicians and scientists to rethink (...) and revise the old standards. Governments established commissions to recommend policies. Courts heard arguments and legislatures passed laws. This book is the first broad history of the growing field of bioethics. Covering the period 1947-1987, it examines the origin and evolution of the debates over human experimentation, genetic engineering, organ transplantation, termination of life-sustaining treatment, and new reproductive technologies. It assesses the contributions of philosophy, theology, law and the social sciences to the expanding discourse of bioethics. Written by one of the field's founders, The Birth of Bioethics is based on extensive archival research into sources that are difficult to obtain and on interviews with many of the leading figures in the moral debates in medicine. A very readable and comprehensive account of the evolution of bioethics, this book stresses the history of ideas but does not neglect the social and cultural context and the people involved. It will serve the information needs of philosophers, ethicists, social historians, and everyone interested in the origins of some of today's most hotly debated issues. (shrink)