Since its advent, predictive DNA testing has been perceived as a technology that may have considerable impact on the quality of people’s life. The decision whether or not to use this technology is up to the individual client. However, to enable well considered decision making both the negative as well as the positive freedom of the individual should be supported. In this paper, we argue that current professional and public discourse on predictive DNA-testing is lacking when it comes to supporting (...) positive freedom, because it is usually framed in terms of risk and risk management. We show how this ‘risk discourse’ steers thinking on the good life in a particular way. We go on to argue that empirical research into the actual deliberation and decision making processes of individuals and families may be used to enrich the environment of personal deliberation in three ways: (1) it points at a richer set of values that deliberators can take into account, (2) it acknowledges the shared nature of genes, and (3) it shows how one might frame decisions in a non-binary way. We argue that the public sharing and discussing of stories about personal deliberations offers valuable input for others who face similar choices: it fosters their positive freedom to shape their view of the good life in relation to DNA-diagnostics. We conclude by offering some suggestions as to how to realize such public sharing of personal stories. (shrink)

We appreciate that the theme “ethics of ethics conferences” that we introduced in 2023 (Van der Graaf et al. 2023) was echoed by the previous and current presidents of the International Association...

Bioethics, as a field, grapples with ethical implications of biological and medical advancements. The global nature of these challenges necessitates international collaboration and discourse. At th...

Gender affirming hormone treatment is an important part of the care of trans adolescents which enables them to develop the secondary sexual characteristics congruent with their identified genders. There is an increasing amount of empirical evidence showing the benefits of gender affirming hormone treatment for psychological health and social well-being in this population. However, in several countries, access to gender affirming hormone treatment for trans adolescents has recently been severely restricted. While much of the opposition to gender affirming hormone treatment (...) for trans adolescents has in part been ideologically motivated, it also reflects a debate about whether there are harms that outweigh the benefits of the treatment. Accordingly, a systematic and comprehensive philosophical analysis of the ethics of gender affirming hormone treatment for trans adolescents is needed. Herein, I offer such an analysis that draws on the four principles of biomedical ethics by Tom Beauchamp and James Childress. Based on the considerations of beneficence, nonmaleficence, autonomy, and justice, I argue that the provision of access to gender affirming hormone treatment for consenting trans adolescents is ethically required and that the current restrictions to such treatment are ethically wrong. (shrink)

In the field of bioethics, scholars have begun to consider carefully the impact of structural issues on global population health, including socioeconomic and political factors influencing the disproportionate burden of disease throughout the world. Human rights and social justice are key considerations for both population health and biomedical research. In this paper, I will briefly explore approaches to human rights in bioethics and review guidelines for ethical conduct in international health research, focusing specifically on health research conducted in resource-poor settings. (...) I will demonstrate the potential for addressing human rights considerations in international health research with special attention to the importance of collaborative partnerships, capacity building, and respect for cultural traditions. Strengthening professional knowledge about international research ethics increases awareness of ethical concerns associated with study design and informed consent among researchers working in resource-poor settings. But this is not enough. Technological and financial resources are also necessary to build capacity for local communities to ensure that research results are integrated into existing health systems. Problematic issues surrounding the application of ethical guidelines in resource-poor settings are embedded in social history, cultural context, and the global political economy. Resolving the moral complexities requires a commitment to engaged dialogue and action among investigators, funding agencies, policy makers, governmental institutions, and private industry. (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)

Contemporary bioethics recognizes the importance of the culture in shaping ethical issues, yet in practice, a process for ethical analysis and decision making is rarely adjusted to the culture and ethnicity of involved parties. This is of a particular concern in a health care system that is caring for a growing Aboriginal population. We raise the possibility of constructing a bioethics grounded in traditional Aboriginal knowledge. As an example of an element of traditional knowledge that contains strong ethical guidance, we (...) present the story of the Gifts of the Seven Grandfathers. We note a resemblance of this Ojibway teaching to virtue ethics in European traditions, but we suggest that there are also important differences in how these two traditions are currently presented. We hope that further engagement with a variety of indigenous moral teachings and traditions could improve health care involving Aboriginal patients and communities, and enrich the discipline of bioethics. (shrink)

Health care services increasingly face patient populations with high levels of ethnic and cultural diversity. Cultures are associated with distinctive ways of life; concepts of personhood; value systems; and visions of the good that affect illness experience, help seeking, and clinical decision-making. Cultural differences may impede access to health care, accurate diagnosis, and effective treatment. The clinical encounter, therefore, must recognize relevant cultural differences, negotiate common ground in terms of problem definition and potential solutions, accommodate differences that are associated with (...) good clinical outcomes, and manage irresolvable differences. Clinical attention to and respect for cultural difference (a) can provide experiences of recognition that increase trust in and commitment to the institutions of the larger society, (b) can help sustain a cultural community through recognition of its distinct language, knowledge, values, and healing practices, and (c) to the extent that it is institutionalized, can contribute to building a pluralistic civil society. (shrink)

The neglect of psycho-spiritual needs of patients as they traverse the modern healthcare system has been a featured theme in medical literature over the past decade. This literature, which often highlights in-patient palliative care, as well as acute and critical care settings, influences practice guidelines and protocols of doctors and nurses. In this essay, I review some of the pertinent issues raised in the literature and examine the validity of placing an ethical perspective on this issue. I also compare Islamic (...) theocentric perspectives with secular, non-theistic perspectives on restoring psycho-spiritual care for patients. I then develop a framework for pastoral intervention based on aspects of the Islamic tradition and elaborate this framework by addressing clinical contexts and cases. The essay is an exposition based upon a review of the modern medical literature, an analysis of some of the traditional Islamic written sources, and the observations of the investigator, a practicing physician and an American Muslim. (shrink)

In today’s pluralistic society, clinical ethics consultation cannot count on a pre-given set of rules and principles to be applied to a specific situation, because such an approach would deny the existence of different and divergent backgrounds by imposing a dogmatic and transcultural morality. Clinical ethics support (CES) needs to overcome this lack of foundations and conjugate the respect for the difference at stake with the necessity to find shared and workable solutions for ethical issues encountered in clinical practice. We (...) argue that a pragmatist approach to CES, based on the philosophical theories of William James, John Dewey, and Charles Sanders Peirce, can help to achieve the goal of reaching practical solutions for moral problems in the context of today’s clinical environment, characterized by ethical pluralism. In this article, we outline a pragmatist theoretical framework for CES. Furthermore, we will show that moral case deliberation, making use of the dilemma method, can be regarded an example of a pragmatist approach to CES. (shrink)

The four principles approach to biomedical ethics points to respect for autonomy, beneficence, non-maleficence and justice as the norms that should guide moral agents working in the biosciences, and particularly in health care. While the approach is well known, it is not without its critics. In this paper, which is primarily aimed at health professionals and students (from various disciplines) who are studying health care ethics, I consider four problems with the four principles, which respectively claim that the approach is (...) imperialist, inapplicable, inconsistent and inadequate. In keeping with the aims of the ‘five-minute focus’, the primary objective is to introduce these debates, rather than seek to resolve them. However, I will suggest that the approach does have its merits, not least for time-pressed clinicians who are keen to keep an eye on the ethical dimensions of their practices, and for students training in the health care professions, provided that they appreciate that the approach provides only a starting point for, and not the end point of, moral deliberation. (shrink)

The literature on rational suicide (RS) holds that if a rational person wishes to suicide under circumstances deemed rational, there is no moral reason to prohibit a person from suiciding. There are forty years of literature dedicated to establishing what rational suicide is and demonstrating its moral permissibility. What is shocking is that in this literature, almost no attempts are made to include the perspectives of mental health users. Drawing from the work of Hilde Lindemann, I argue that ignoring of (...) the perspectives of mental health users constitutes a form of erasure and oppression that must be rectified. (shrink)

The evaluation of new theories and pedagogical approaches to business ethics is an essential task for ethicists. This is true not only for empirical and applied evaluation but also for metatheoretical evaluation. However, while there is increasing interest in the practical utility and empirical testing of ethical theories, there has been little systematic evaluation of how new theories relate to existing ones or what novel conceptual characteristics they might contribute. This paper aims to address this lack by discussing the role (...) of metatheorising in assessing new approaches to ethics. The approach is illustrated through evaluating a new pedagogy and curriculum for ethics education called Giving Voice to Values (GVV). Our method involves identifying a number of metatheoretical lenses from existing reviews of ethical theories and applying these to examine GVV’s conceptual elements. Although GVV has been explicitly presented as a pedagogy and teaching curriculum, we argue that it has the potential to contribute significantly to the development of ethical theory. We discuss the general implications of this metatheoretical method of evaluation for new approaches to business ethics and for GVV and its future development. (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)

The relationship between sociology and bioethics has been an uneasy one. It has been described as contentious and adversarial, and at least some of the sociologists who have ventured into the territory of medical ethics report back on unfriendly natives. This bioethical ill will toward sociology is not without cause. Sociologists have been quite critical of what they call the bioethical project. Two decades ago - when bioethics was just getting up on its organizational feet - Renée Fox and Judith (...) Swazey leveled the charge of cultural myopia against bioethics, noting that this myopia generally manifests itself in the form of systematic inattention to the social and cultural sources and implications of its own thought. They go on to say ifbioethics is an indicator of the general state of American ideas, values, and beliefs, of our collective self knowledge, and our understanding of other societies and cultures - then there is every reason to be worried about who we are, what we have become, and where we are going. (shrink)