Translational ethics (TE) has been developed into a specific approach, which revolves around the argument that strategies for bridging the theory‐practice gap in bioethics must themselves be justified on ethical terms. This version of TE incorporates normative, empirical and foundational ethics research and continues to develop through application and in the face of new ethical challenges. Here, I explore the idea that the academic field of bioethics has not yet sufficiently analysed its own philosophical foundation for how (...) it can, and should, be practically relevant; neither has it comprehensively discussed the limitations on what impacts bioethicists should pursue. As a result, there has not been adequate training on how to suitably and appropriately impact real‐world practices. Moreover, bioethical perspectives are often competing with other strong interests, for example, economic and political, which may weaken their impact on policy‐making. The TE approach I propose can not only facilitate practical impacts of academic bioethics by being better informed by real‐world ethical issues but it also supports targeted and ethical justifications of the actual impact of academic work in real‐world contexts. In this paper, I clarify the premises for this TE approach, identify further challenges and sketch out potential solutions for the implementation of this methodological framework. (shrink)

This article discusses an approach to translational bioethics (TB) that is concerned with the adaptation—or ‘translation’—of concepts, theories and methods from bioethics to practical contexts, in order to support ‘non-bioethicists’, such as researchers and healthcare practitioners, in dealing with their ethical issues themselves. Specifically, it goes into the participatory development of clinical ethics support (CES) instruments that respond to the needs and wishes of healthcare practitioners and that are tailored to the specific care contexts in which they (...) are to be used. The theoretical underpinnings of this participatory approach to TB are found in hermeneutic ethics and pragmatism. As an example, the development of CURA, a low-threshold CES instrument for healthcare professionals in palliative care, is discussed. From this example, it becomes clear that TB is a two-way street. Practice may be improved by means of CES that is effectively tailored to specific end users and care contexts. The other way around, ethical theory may be enriched by means of the insights gained from engaging with practice in developing CES in a process of co-creation. TB is also a two-way street in the sense that it requires collaboration and commitment of both bioethicists and practitioners, who engage in a process of mutual learning. However, substantial challenges remain. For instance, is there a limit to the extent to which a method of moral reasoning can be adapted in order to meet the constraints of a given healthcare setting? Who is to decide, the bioethicist or the practitioners? (shrink)

This paper will take as its starting point the premise that developing translational bioethics is a worthwhile endeavour. I will develop an account of translational bioethics and discuss what implications this would have for the wider discipline of bioethics and argue that this would be a useful development for bioethics. The paper will conduct a form of ‘translational meta‐bioethics analysis’, in the words of Bærøe. I will argue that if we are serious (...) about instituting translational bioethics, then it will need to look and be organised in a very different way from current bioethics research, this will be a radically different form of bioethics from what we currently have. In this paper I will sketch what translational bioethics might look like. My proposal here is not that translational bioethics should supplant existing ways of doing bioethics, but rather that it should be an addition to it, another subdiscipline of bioethics. (shrink)

The COVID-19 pandemic highlighted many issues that can occur due to lack of translation between the spheres of bioethics and clinical practice. In this paper, we examine how mothers and newborn infants were inappropriately separated during the initial stages of the pandemic due to inconsistent application of ethical principles in determining policy. One of the significant challenges that translational bioethics face is the complexity regarding its implementation into the health service environment. As outlined in the literature, it (...) may be postulated that responsibility for translating bioethics from philosophical concepts into practice is the duty of those training in philosophical theory and reasoning. However, the use of bioethics in informing clinical practice is not just the case of needing a translator but rather requires an interpreter in the widest sense: professionals attuned to both bioethics and clinical practice, who can communicate with both groups effectively. A two-way dialogue needs to be more cohesively established to ensure clinical practice is guided by ethical principles and to focus academic debate towards the pragmatic issues that require ethical exploration. Utilising the translational bioethics model described by Bærøe and applying it to our perinatal COVID case study, we examine how an integrated translational bioethics approach could have prevented the harm and disruption to mother–infant dyads during the initial phase of the pandemic in 2020. (shrink)

In recent years, the case has been made for special attention to be paid to a branch of research in the field of bioethics called ‘translational bioethics’. In this paper, we start by considering some of the assumptions that those advancing translational approaches to bioethics make about bioethics and compare them to the reality of bioethics as an academic field. We move on to explain how those who make this case, implicitly or explicitly, (...) for translational bioethics go awry because of how they understand the ‘gap’ between bioethical inquiry and practical settings that requires bridging. We consider three interpretations of this ‘translation gap’ in bioethics: (i) the gap between theory and practice, (ii) the gap between the force of normative claims and practical contextual realities and (iii) the gap between relevance or applicability to practice and actual application or implementation in practice. In each case, we show how a proper understanding of the nature of the academic field of bioethics undermines how these gaps have been formulated, and how any need for talk of ‘translational bioethics’ is removed. (shrink)

The concept of “translational bioethics” has received considerable attention in recent years. Most publications draw an analogy to translational medicine and describe bioethical research that aims at implementing and evaluating ethical interventions. However, current accounts of translational bioethics are often rather vague and seem to differ with regard to conceptual and methodological assumptions. It is not clear and scarcely analyzed what exactly “translation” in the field of bioethics means, in particular regarding goals and processes (...) so that it is justified to appeal to translational medicine. In this article, we thus explore possible analogies and disanalogies between translational medicine and translational bioethics to establish whether the often occurring reference to concepts of translational medicine in the field of bioethics can be justified by substantial analogies. We will first provide an account of different models of translational medicine. In a second step, we will propose an analytic definition that explicitly articulates the essential characteristics of “translational research” irrespective of the research field (i.e., biomedicine, bioethics). Subsequently, we will explore whether and in how far general characteristics and phases of translational research in medicine can be applied to translational research in bioethics. Based on our analyses, we will come to the skeptical conclusion that at present there are considerable conceptual disanalogies and unsolved conceptual problems that disallow using “translational bioethics” in a meaningful analogy to respective accounts in biomedicine. Nevertheless, we will demonstrate that some insights gained by the conceptual accounts of translational medicine can contribute to advance current research activities in bioethics. (shrink)

We suggest that in the particular context of medical education, ethics can be considered in a similar way to other kinds of knowledge that are categorised and shaped by academics in the context of wider society. Moreover, the study of medical ethics education is translational in a manner loosely analogous to the study of medical education as adjunct to translational medicine. Some have suggested there is merit in the idea that much as translational research attempts to connect (...) the laboratory scientist's work to its implications for patient care, translational ethics focuses on bringing ethics scholarship into the sphere of personal and public action. We distinguish the term ‘translational ethics’ (the study of ethics being translated between academy, classroom and clinic) from other prominent definitions in the bioethics literature. To do this, we build off a notion of knowledge translation that focuses on the nonlinear movement of information that comes to professionals through multiple competing sources. We suggest that this knowledge, and particularly knowledge about ethics, becomes embodied by the individual. It is through a reflective practice that internally embedded ethics knowledge might be modified, and this work might be best carried out with a moral community that maintains a sense of practical wisdom. Applying this translational approach to the study of medical ethics education can be both academically relevant and practically useful. This view of translation can help bridge the evident, multidirectional relationships between research, education and performance. It might also create further opportunities to develop medical ethics education theory. (shrink)

ABSTRACT:COVID-19 revealed health-care systems in crisis. Intersecting crises of stress, overwork, and poor working conditions have led to workforce strain, under-staffing, and high rates of job turnover. Bioethics researchers have responded to these conditions by investigating the ethical challenges of pandemic response for individuals, institutions, and health systems. This essay draws on pandemic findings to explore how empirical bioethics can inform post-pandemic translational bioethics. Borrowing from the concept of translational science in medicine, this essay proposes (...) that translational bioethics should communicate knowledge about ethical challenges in health-care work to support health systems change. The authors draw from their experience with the Study to Examine Physicians' Pandemic Stress (STEPPS), an interdisciplinary research project that investigates physicians' experiences at the front lines of the COVID-19 pandemic. Using STEPPS as an example of empirical bioethics with potential for translation, the authors review their research and discuss the ongoing process for translating their findings, focusing on how bioethics research and practice can contribute to supporting the health-care workforce. (shrink)

ABSTRACT:Assumptions that bioethics was intended to focus only on a narrow set of issues related to research and health care are mistaken. The field of bioethics has long been focused on pressing contemporary issues, and it will play an unduly peripheral and less significant role than it could otherwise if it fails to focus on a broad set of issues, including human relations and the relationship of humans to nonhuman beings and the environment—and if it does not consider (...) how to engage with others in addressing these issues. Bioethicists' traditional approaches, which emphasize an analytical role regarding values and goals, are important, but bioethicists also must include stakeholders in deliberations and consider how to translate goals into policy and practice. (shrink)

Translational science attempts to accelerate and increase the significance of research progressing from bench to bedside. Support from the NIH through its institutional grant program has increased the prominence and importance of translational science. The inclusion of a broadly based bioethics component to translational science presents an opportunity for bioethics scholars to address fundamental social issues, including the effects of translational science on public health, health equity, and human flourishing. Large-scale bioethical inquiries could examine (...) research priorities, unintended consequences of research, and access to and uptake of research discoveries. (shrink)

The shift towards "empirical bioethics" was largely triggered by a recognition that stakeholders' views and experiences are vital in ethical analysis where one hopes to produce practicable recommendations. Such perspectives can provide a rich resource in bioethics scholarship, perhaps challenging the researcher's perspective. However, overreliance on a picture painted by a group of research participants—or on pre‐existing literature in that field—can lead to a biased view of a given context, as the subjectivity of data generated in these ways (...) cannot (and should not wholly) be escaped. In response, we propose the implementation of a complementary approach of ethno‐immersion in bioethics research. By positioning oneself in the context being researched, the researcher can better understand the realities of that context. The researcher's understanding will, naturally, be subjective too. However, it will act as a better developed and more informed outsider view, when considering the picture painted by participants and previous studies, thus enabling the researcher to introduce more nuance when analysing data. We introduce this approach after examining what we call the context detachment problem, whereby some bioethics scholarship—empirical or otherwise—fails to reflect the reality of the healthcare setting it concerns. Our proposed ethno‐immersion (which differs from formal ethnography) is then explored as a response, highlighting its benefits, and answering the question of timing within a research project. Finally, we reflect on the applicability of our proposal to non‐empirical bioethics scholarship, concluding that it remains important but may require some adjustments. (shrink)

There are increasing pressures for bioethics research to have translational purposes. Against this backdrop, we argue in defense of speculative bioethics. We explore methods of speculation and their importance. Further, we examine the relationship between speculative bioethics and translational bioethics and posit that they are not dimorphous enterprises, but often support each other. First, speculative research might be conducted as ethical analysis of contemporary issues through a new lens, in which case it is a (...) means of conducting translational work. Second, speculative bioethics research might be a first step prior to translational work on a topic, in which case speculative bioethics is a necessary requirement for later translational work. Finally, speculative bioethics research might be a separate kind of bioethics altogether, in which case it does not have the same objectives of impact and translation as other bioethics work. For each type of work, important methodological aspects determine whether it constitutes good speculative bioethics research. We conclude that speculative bioethics is multipurpose, and whether it should have a translational dimension—and to what extent—depends on the issue. Applying standards of impact and translation as the gold standard across bioethics may inappropriately limit bioethics, particularly on emerging technologies. (shrink)

Controversy and activism have long been linked to the subject of primate research. Even in the midst of raging ethical debates surrounding fertility treatments, genetically modified foods and stem-cell research, there has been no reduction in the campaigns of activists worldwide. Plying their trade of intimidation aimed at ending biomedical experimentation in all animals, they have succeeded in creating an environment where research institutions, often painted as guilty until proven innocent, have avoided addressing the issue for fear of becoming targets. (...) One area of intense debate is the use of primates in stroke research. Despite the fact that stroke kills more people each year than AIDS and malaria, and less than 5% of patients are candidates for current therapies, there is significant opposition to primate stroke research. A balanced examination of the ethics of primate stroke research is thus of broad interest to all areas of biomedical research. (shrink)

There are increasing pressures for bioethics to emphasise ‘translation’. Against this backdrop, we defend ‘speculative bioethics’. We explore speculation as an important tool and line of bioethical inquiry. Further, we examine the relationship between speculation and translational bioethics and posit that speculation can support translational work. First, speculative research might be conducted as ethical analysis of contemporary issues through a new lens, in which case it supports translational work. Second, speculation might be a first (...) step prior to translational work on a topic. Finally, speculative bioethics might constitute different content altogether, without translational objectives. For each conception of speculative bioethics, important methodological aspects determine whether it constitutes good bioethics research. We conclude that whether speculative bioethics is compatible with translational bioethics—and to what extent—depends on whether it is being employed as tool or content. Applying standards of impact uniformly across bioethics may inappropriately limit speculative bioethics. (shrink)

Controversy and activism have long been linked to the subject of primate research. Even in the midst of raging ethical debates surrounding fertility treatments, genetically modified foods and stem-cell research, there has been no reduction in the campaigns of activists worldwide. Plying their trade of intimidation aimed at ending biomedical experimentation in all animals, they have succeeded in creating an environment where research institutions, often painted as guilty until proven innocent, have avoided addressing the issue for fear of becoming targets. (...) One area of intense debate is the use of primates in stroke research. Despite the fact that stroke kills more people each year than AIDS and malaria, and less than 5% of patients are candidates for current therapies, there is significant opposition to primate stroke research. A balanced examination of the ethics of primate stroke research is thus of broad interest to all areas of biomedical research. (shrink)

The term and concept of bioethics (Bio-Ethik) originally were developed by Fritz Jahr, a Protestant Pastor in Halle an der Saale in 1927, long before in the 1970ties bioethics in the modern sense was recreated in the US and since has spread globally. Jahr’s bioethical imperative, influenced by Christian and humanist traditions from Assisi to Schopenhauer and by Buddhist philosophy holds its own position against Kant’s anthropological imperative and against dogmatic Buddhist reasoning: ‘Respect each living being as an (...) end in itself and treat it, if possible, as such’. Jahr interprets the 5th Commandment ‘Thou shalt not kill’ offensively and liberally as ‘common morality’ which includes the obligation of caring for one’s own health, public health and health education within the wider framework of a universal bioethical Sittengesetz. Pastor Fritz Jahr, who had no immediate influence during his times, built a strong first Protestant foundation for contemporary theological and ethical concepts in medical ethics, bioethics, and environmental ethics. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Editors' Introduction to the Special Issue on the Translational Work of BioethicsElizabeth Lanphier and Larry R. ChurchillRecent essays in Perspectives and Biology and Medicine, including "Can Clinical Ethics Survive Climate Change" by Andrew Jameton and Jessica Pierce and "Ethical Maxims for a Marginally Inhabitable Planet" by David Schenck and Larry R. Churchill, both appearing in the Autumn 2021 issue, inspired conversations between us, among our colleagues, and with (...) various contributors to this symposium. We asked of ourselves and each other: where can, should, or must bioethics as a field go to make what bioethicists know and publish about in the academic literature relevant to public policy decisions, health and technological innovation, and a general public? In other words, where do we, practically speaking, go with our bioethical insights and discoveries to make a tangible impact on issues like climate change—though that is only one of the various topics that the authors in this symposium tackle.This translational work of connecting scholarly innovation back to overt practical innovation is often peripheral to academic bioethics. It is not the work the academy typically recognizes in its credit system. Yet this translational work is becoming a critical, central duty of bioethics for the 21st century, while the kinds of work the academy most valorizes may be the least important at this time. In particular, the need for translational initiatives is increasingly evident as pandemics linger into a new normal, the long history and ongoing impacts of racism become even more evident at institutional levels, and the devastating health implications of global warming emerge. [End Page 515]Bioethicists function in privileged proximity to the deleterious effects of failed health and social policy, as well the interplay between seemingly personal health choices, such as those related to diet or lifestyle, and inequitable conditions that impact the options available to individuals and groups. We are increasingly distressed by what we see from this privileged window into health. The COVID-19 pandemic has made preexisting social and policy inequities impacting health impossible to ignore. At the same time, the patterns of carbon pollution portend health crises of unprecedent severity and magnitude in the near future—and will likely deepen inequities and disparities already occurring between those most contributing to, and those most harmed by, climate change.As a field, bioethics has, since its start, been at the intersection of theory and practice. But it is not sufficient for the field to reside passively at this crossroads. The field must be constantly innovating new byways and highways, new offshoots from existing pathways and connector roads between them, that build out both the theory and practice of bioethics in a mutually innovative relationship to each other. Bioethics does not make sense without attention to the real-world practices and the lived realities of health and care. The practical engagement is what deepens and enriches theory, in ways that are more responsive to the real world in which bioethicists toil. But it also is not enough to merely contribute to the body of bioethics scholarship. The translational bioethics we envision is also about using novel theories and concepts to actively shape practices and realities; it is a bioethics in which theory and practices mutually influence each other, each reaching out to generate and change the other.This collection of essays, drawn from a diverse number of scholars, offers several promising paths forward. The essays were written in the spring of 2022, two years into the COVID-19 pandemic, two years after the murder of George Floyd and international attention to the movement for Black lives, and for the most part in the weeks just prior to a set of US Supreme Court decisions with enormous impacts on health, including the June 24 Dobbs v. Jackson Women's Health Organization and the June 30 West Virginia v. EPA decisions.The authors are diverse in age, spheres of work, discipline, sex, race, and ethnicity. They expand our vision for what bioethics can and should be. While we have grouped the essays by subject matter, most of the pieces speak to the field as a whole and invite cross-fertilization. We hope readers will find new ideas, old ideas... (shrink)

While the bioethics literature demonstrates that the field has spent substantial time and thought over the last four decades on the goals, methods, and desired outcomes for service and training in bioethics, there has been less progress defining the nature and goals of bioethics research and scholarship. This gap makes it difficult both to describe the breadth and depth of these areas of bioethics and, importantly, to gauge their success. However, the gap also presents us with (...) an opportunity to define this scope of work for ourselves and to help shape the broader conversation about the impact of academic research. Because of growing constraints on academic funding, researchers and scholars in many fields are being asked to demonstrate and also forecast the value and impact of their work. To do that, and also to satisfy ourselves that our work has meaningful effect, we must understand how our work can motivate change and how that change can be meaningfully measured. In a field as diverse as bioethics, the pathways to and metrics of change will likewise be diverse. It is therefore critical that any assessment of the impact of bioethics research and scholarship be informed by an understanding of the nature of the work, its goals, and how those goals can and ought to be furthered. In this paper, we propose a conceptual model that connects individual bioethics projects to the broader goals of scholarship, describing the translation of research and scholarly output into changes in thinking, practice, and policy. One of the key implications of the model is that impact in bioethics is generally the result of a collection of projects rather than of any single piece of research or scholarship. Our goal is to lay the groundwork for a thoroughgoing conversation about bioethics research and scholarship that will advance and shape the important conversation about their impact. (shrink)

Translational research in medicine requires researchers to identify the steps to transfer basic scientific discoveries from laboratory benches to bedside decision-making, and eventually into clinical practice. On a parallel track, philosophical work in ethics has not been obliged to identify the steps to translate theoretical conclusions into adequate practice. The medical ethicist A. Cribb suggested some years ago that it is now time to debate ‘the business of translational’ in medical ethics. Despite the very interesting and useful perspective (...) on the field of medical ethics launched by Cribb, the debate is still missing. In this paper, I take up Cribb’s invitation and discuss further analytic distinctions needed to base an ethics aiming to translate between theory and practice. (shrink)

As early-career neuroethicists, we come to the field of neuroethics at a unique moment: we are well-situated to consider nearly two decades of neuroethics scholarship and identify challenges that have persisted across time. But we are also looking squarely ahead, embarking on the next generation of exciting and productive neuroethics scholarship. In this article, we both reflect backwards and turn our gaze forward. First, we highlight criticisms of neuroethics, both from scholars within the field and outside it, that have focused (...) on speculation and lack of skepticism; the dearth of consideration of broader social issues such as justice and equality, both with regard to who speaks for neuroethics as a field and who benefits from its recommendations and findings; and the insufficient focus on the practical impact of our ethical work. Second, we embrace the concept of “translational neuroethics” to outline a vision for neuroethics that is integrated, inclusive, and impactful. Integration can help us identify more pertinent, real-world issues, and move away from speculation; inclusivity can help ensure that the questions we attend to are not merely relevant to a single subgroup but aim toward just distribution of benefits; and impact can help us think beyond guidelines and recommendations to focus on implementation. Our goal is for this call to action to help shape neuroethics into a discipline that develops rigorous research agendas through relationships with interdisciplinary partners, that is broadly inclusive and attends to issues beyond novel neurotechnologies, and that is devoted to the translation of scholarship into practice. (shrink)

The translation of bedside experience to pedagogical content presents a unique challenge for the field of bioethics. The contributions are multidisciplinary, the practices are heterogeneous, and the work product is characteristically nuanced. While academic bioethics education programs have proliferated, developing content and pedagogy sufficient to teach clinical ethics effectively remains a longstanding challenge. The authors identify three reasons why progress towards this goal has been slow. First, there is a lack of robust, empirical knowledge for education focused on (...) praxis. Second, the methods employed in academic education tend to focus on traditional didactic approaches rather than engendering competency through interaction and practice—the principle means by which clinical ethicists work. Third, the data practitioners have captured has not been presented in a medium educators and students can most meaningfully interact with. In this paper, the authors describe a novel pedagogical tool: the Armstrong Clinical Ethics Coding System (ACECS) and interactive visual analytics dashboard. Together, these components comprise an educational platform that utilizes the empirical data collected by the institution’s ethics service. The tool offers four advantages. First, it aids with the identification of ethical issues that present during a consultation at that specific institution or medical unit by making use of a lingua franca comprehensible to both ethicists and non-ethicists. Second, content is centered on issue frequency, type, and relation to other issues. Iterating through cases, requestors, or hospital units allows one to understand cases typologically and through metanarratives that reveal relationships and subtle patterns. Third, the use of interactive data visualizations and data storytelling aids comprehension and retention. Fourth, the process of using the system necessitates understanding the manifold ways each case can be understood, accommodating a wide range of perspectives and ethical lenses, enhancing case analysis and self-reflection conducive to life-long learning. (shrink)

"Jewish Bioethics" as currently formulated has been criticized as being of parochial concern, drawing on obscure methodology, employing an authoritarian (and, to the modern mind, unintelligible) method of discourse and as being of little relevance to the wider community. We analyze Jewish bioethics in terms of rule and principle theory and demonstrate that it is based on rational consideration and reproducible reasoning. This approach allows methodological and terminological translation into a Western method of discourse that, in turn, has (...) much to contribute to clarifying underlying principles and methods of application of modern bioethics. (shrink)

On the basis of a historical reconstruction of the stages through which the Christian notion of sin took shape in Protestantism, the significance of this term for modern bioethics is derived from its opposition to a holiness of God and his creatures, which in turn translates into the secular moral concept of dignity. This dignity imposes obligations to respect and to relationships that are sustained by faithfulness and trust. In being based on the gratuitousness of God’s grace, such relationships (...) preclude attempts at instrumentalization, denial of singularity, and subjection to market forces. Accordingly, reproductive cloning as well as exposing medicine to economical considerations can be classified as sinful. The difference between sinful acts and humans’ sinful state furthermore permits to address the problems of evil and misfortune in the world, and to acknowledge humans’ responsibility for the threats to humanity entailed by those ills. While the Christian faith relies on God’s mercy, it also imposes the task of following Christ by fighting against evil and misfortune. (shrink)

Secular bioethicists do not speak from a place of distinction, but from within particular culturally, socially, and historically conditioned standpoints. As partisans of moral and ideological agendas, they bring their own biases, prejudices, and worldviews to their roles as ethical consultants, social advocates, and academics, attempting rhetorically to sway others and shift policy to a preferred point of view. Their pronouncements represent just one voice among others, even when delivered with strident rhetoric, in an educated and knowing tone, from within (...) institutional positions of power. This essay argues that, given the hegemony of progressive secular bioethics, traditional Christians routinely face epistemic injustice within medicine. That is, Christian knowledge regarding moral reality is all too often demeaned or dismissed, unless such norms can be translated into and defended within a secular ethos. Given such systemic bias, I argue, Christians also experience significant moral distress: they are fully aware of their moral obligations and what they ought to do, but institutionalized power structures make it nearly impossible to so act. But, Christian physicians are not mere technicians, obliged to provide whatever patients request from the list of legally available treatments. That antireligious critics seek to remove the rights of Christian physicians to limit how they practice medicine, where they do not offer or refer for abortion, euthanasia, physician-assisted suicide, and other inappropriate forms of care, is unjustified and prejudicial, singling out Christians, and other religious groups, for singular treatment. Regardless of what the law requires or institutional policy demands, however, Christians are obliged to submit to God in all things. As a result, they may at times find themselves required to engage in acts of civil disobedience. (shrink)

BackgroundLiterature on issues relating to comprehension during the process of obtaining informed consent (IC) has largely focused on the challenges potential participants can face in understanding the IC documents, and the strategies used to enhance comprehension of those documents. In this review, we set out to describe the factors that have an impact on comprehension and the strategies used to enhance the IC process in sub-Saharan African countries.MethodsFrom November 2021 to January 2022, we conducted a literature search using a PRISMA (...) tool. We searched electronic databases (PubMed, EMBASE, EBSCOHOST) to identify relevant peer reviewed studies. We then reviewed the references of these articles to find additional literature that might have been missed through the initial search. We were particularly interested in full text articles in English that focused on the IC process in SSA published between 2006 and 2020. We included systematic reviews, and studies from Western and Asian countries that included data about SSA. We excluded articles that focused on medical interventions and studies that did not require IC.ResultsOut of the 50 studies included most were multi-country (n = 13) followed by single country studies in South Africa (n = 12); Kenya, Tanzania, Uganda (n = 5) each; Gambia, Ghana and Nigeria (n = 2)each ; and one each for Botswana, Malawi, Mali, Mozambique. We identified three areas of focus: (1) socio-cultural factors affecting IC; (2) gaps in the ethical and legal frameworks guiding the IC process; and (3) strategies used to improve participants’ understanding of IC.ConclusionOur review showed wide recognition that the process of achieving IC in SSA is inherently challenging, and there are limitations in the strategies aimed at improving comprehension in IC. We suggest that there is a need for greater flexibility and negotiation with communities to ensure that the approach to IC is suited to the diverse socio-cultural contexts. We propose moving beyond the literal translations and technical language to understanding IC comprehension from the participants’ perspectives and the researchers’ views, while examining contextual factors that impact the IC process. (shrink)

Many Christian scholars, if not all of them, consider Genesis to be foundational texts of the Bible and the spring for all the other doctrines of the Scripture. Therefore, I'm considering the attempt to search and find arguments for cell therapy ethical issues in the fundamental text of Genesis as a challenging and educative task. Moreover, this could be the first step in analyzing the relationships between Christian religions and bioethics, in terms of finding reasonable decisions for ethical challenges, (...) raised by the current biomedical research. As for many other dilemmas of humanity, we have to recall the text of Genesis for analyzing the goodness or evilness of our actions in translational medicine, even though that is not the only way to get a reasonable ethical decision. My contribution is an essay that is trying to correlate the Genesis lessons with the needed arguments in deciding what could be good and what could be evil in the stem cell research, according to the religious convictions. The biggest challenges of biomedical research for Christian religions were due to the human cloning issue, made possible by the somatic cell nuclear transfer, but those challenges update the older debates on birth control pill, technologically assisted reproduction, or gene therapy. Issues related to in vitro fertilization, gene enhancement and gene therapy, human cell cloning, embryonic stem cell using, and chimera cell obtaining for research are being considered and related to the putative arguments extracted from the book of Genesis, describing the origins. As a matter of fact, I may conclude that the single way to reach a reasonable ethical decision in our society is to intersect ethics, science and theology and to engage large debates involving scientists, theologians, civil society representatives, ethicists (experts in applied ethics) and moral philosophers, having the two latest professionals as referees. (shrink)

This paper compares the opinions that people in Thailand have on the impact of bioethics and biotechnology in the year 2000 with 1993. During the year 2000 sampling was conducted upon a relatively well educated public group, and on university students, and the open comments that explore the reasoning people have were translated into English and analyzed. A total of 214 public and 84 university respondent questionnaires were gathered to compare with the 689 public and 232 student respondents in (...) 1993.In the year 2000 there was less optimism in science and technology than 1993. In questions on the specific application of technology more persons expressed greater worry for pesticides, genetic engineering and computers. The results of questions on specific applications on genetics reveal that there has been a halving of the support for gene transfer from plant to plant, and even greater drop in support for animal to plants. There has been a drop in approval of environmental release of GMOs, as also found in other countries of the world. There was a doubling of the persons who said that television was the source of their feelings about science and technology in 2000 compared to 1993. There was also increased mention of learning about these issues in their education. (shrink)

Controversy and activism have long been linked to the subject of primate research. Even in the midst of raging ethical debates surrounding fertility treatments, genetically modified foods and stem-cell research, there has been no reduction in the campaigns of activists worldwide. Plying their trade of intimidation aimed at ending biomedical experimentation in all animals, they have succeeded in creating an environment where research institutions, often painted as guilty until proven innocent, have avoided addressing the issue for fear of becoming targets. (...) One area of intense debate is the use of primates in stroke research. Despite the fact that stroke kills more people each year than AIDS and malaria, and less than 5% of patients are candidates for current therapies, there is significant opposition to primate stroke research. A balanced examination of the ethics of primate stroke research is thus of broad interest to all areas of biomedical research. (shrink)

This paper reflects on the relationship between theory and practice in bioethics, by using various concepts drawn from debates on innovation in healthcare research—in particular debates around how best to connect up blue skies ‘basic’ research with practical innovations that can improve human lives. It argues that it is a mistake to assume that the most difficult and important questions in bioethics are the most abstract ones, and also a mistake to assume that getting clear about abstract cases (...) will automatically be of much help in getting clear about more complex cases. It replaces this implicitly linear model with a more complex one that draws on the idea of translational research in healthcare. On the translational model, there is a continuum of cases from the most simple and abstract to the most concrete and complex. Insights need to travel in both directions along this continuum—from the more abstract to the more concrete and from the more concrete to the more abstract. The paper maps out some difficulties in moving from simpler to more complex cases, and in doing so makes recommendations about the future of bioethics. (shrink)

ABSTRACT:Translational ethics is a practice that aims to apply bioethics insights and process to the real-world contexts of clinical medicine, but also government policy, systems issues, and public health. This work has been a career focus for a relatively small number of bioethicists over the years, but it has drawn greater attention due to the pandemic and a greater realization of the impact of health inequities and systemic injustice. This essay discusses the pathway, rewards, and challenges of (...) class='Hi'>translational bioethics as experienced by one bioethicist working with state and national groups on a range of translational ethics issues, often related to public health disasters. There is much remaining work to be done, and the goal of the essay is to encourage rising bioethicists to engage in translational bioethics. (shrink)

In their target article, Conley et al. (2023) appropriately highlight the ongoing conceptual and practical opacity of public engagement (PE) in the translation of human gene editing (HGE) (Conley e...

Commentators on the ethics of translational research find it morally problematic. Types of translational research are said to involve questionable benefits, special risks, additional barriers to informed consent, and severe conflicts of interest. Translational research conducted on the global poor is thought to exploit them and increase international disparities. Some commentators support especially stringent ethical review. However, such concerns are grounded only in pre-approval translational research. Whether or not T1 has these features, translational research beyond (...) approval is unlikely to and, when conducted on the global poor, may support development. Therefore, insofar as T1 is morally problematic, and no independent objections to T2 exist, the ethics of translational research is diverse: while some translational research is problematic, some is not. Funding and oversight should reflect this diversity, and T2 should be encouraged, particularly when conducted among the global poor. (shrink)

The French bioethics laws of 1994 contain the principles of the anonymity and non commodification of all donations of body parts and products including gametes in medically assisted reproduction. The two revisions of the law, in 2004 and 2011 have upheld the rule. In view of the latest revision process, the French government organized a large public consultation in 2009. Within the event a “consensus conference” was held in Rennes about different aspects of assisted reproduction. In what follows we (...) shall first describe the anonymity clause for gamete donations in the French law and the debates surrounding it. We shall then analyse the procedure used for the 2009 public consultation and the related consensus conference, as well as its upshot concerning the anonymity doctrine. In this respect we shall compare the citizens’ own recommendations on the gamete anonymity issue and its translation in the consultation’s final report drafted by a philosopher mandated by the organizing committee. Whereas the final report cited some fundamental ethical arguments as reason for upholding the provisions of the law—most notably the refusal of the ‘all biological’ approach to reproductive issues—citizens were more careful and tentative in their position although they also concluded that for pragmatic reasons the anonymity rule should continue to hold. We shall argue that the conservative upshot of the public consultation is due to some main underlying presuppositions concerning the citizens’ role and expertise as well as to the specific design of the consensus conference. Our conclusion will be that public consultations and consensus conferences can only serve as an empirical support for devising suitable bioethics norms by using second-order normative assumptions. (shrink)

Commentators on the ethics of translational research find it morally problematic. Types of translational research are said to involve questionable benefits, special risks, additional barriers to informed consent, and severe conflicts of interest. Translational research conducted on the global poor is thought to exploit them and increase international disparities. Some commentators support especially stringent ethical review. However, such concerns are grounded only in pre-approval translational research (now called T1 ). Whether or not T1 has these features, (...) translational research beyond approval ( T2 : phase IV, health services, and implementation research) is unlikely to and, when conducted on the global poor, may support development. Therefore, insofar as T1 is morally problematic, and no independent objections to T2 exist, the ethics of translational research is diverse: while some translational research is problematic, some is not. Funding and oversight should reflect this diversity, and T2 should be encouraged, particularly when conducted among the global poor. (shrink)

Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a “layered” approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation.

In the paper “Translational Neuroethics: A Vision for a More Integrated, Inclusive, and Impactful Field,” Wexler and Sullivan provide an insightful analysis of challenges within the field and how t...

Translational research is a main focus of current health policy (Albani and Prakken 2009; PLoS Medicine 2008). Translation of biomedical research knowledge to effective clinical treatment is essential to the public good (Lavis et al. 2003). Only 5% of basic science studies showing significant therapeutic promise are successfully translated into clinical application (Contopoulos-Ioannidis, Ntzani, and Ionannidis 2003; FDA 2004). As Hall (2001) observes, this is a problem: "When too many important discoveries lie dormant, the public good suffers" (p. G1127). (...) Recent health policy initiatives intended to foster the translation of basic science into clinical advances must consider the unique bioethical issues raised by .. (shrink)

During the COVID‐19 pandemic, national triage guidelines were developed to address the anticipated shortage of life‐saving resources, should ICU capacities be overloaded. Rationing and triage imply that in addition to individual patient interests, interests of population health have to be integrated. The transfer of theoretical and empirical knowledge into feasible and useful practice models and their implementation in clinical settings need to be improved. This paper analyzes how triage protocols could translate abstract theories of distributive justice into concrete material and (...) procedural criteria for rationing intensive care resources during a pandemic. We reconstruct the development and implementation of a rationing protocol at a German university hospital: describing the ethical challenge of triage, clarifying the aspirational norms, and summarizing specific norms of fair triage and allocation for developing an institutional policy and practice model and implementing it. We reflect on how critical topics are seen by clinicians and what helped manage the perceived burdens of the triage dilemma. We analyze what can be learned from this debate regarding the difficult issues around triage protocols and their potential implementation into clinical settings. Analyzing the ought‐to‐is gap of triage, integrating abstract ethical principles into practical concepts, and evaluating those should clarify the benefits and risks of different allocation options. We seek to inform debates on triage concepts and policies to ensure the best possible treatment and fair allocation of resources as well as to help protect patients and professionals in worst‐case scenarios. (shrink)

This paper argues that bioethics requires analysis, which is not explicitly ethical in character. The first part of the paper argues the general point, that ethical problems can arise not only on occasions when moral values make conflicting recommendations, but also in understanding the facts. I suggest that this is particularly so where the facts are provided by the biomedical sciences, since it is often not clear how to relate their conceptual framework to that in which we frame our (...) value judgements. In the second part, I illustrate the argument by criticizing the moral conclusions drawn by the authors of a recent widely publicized study of paediatric obesity. There is a failure to translate properly these results into the language we use for moral evaluation. The case therefore illustrates exactly the analytic gap which I suggest bioethics might do more to fill. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Translating Care for the Voiceless PatientLeo AlmazanUndocumented immigrants do not have the luxury of having a professional interpreter by their bedside to help them navigate the complexities of their often-dire situation. Most of the time, they have to rely on the kindness of volunteers or untrained medical personnel to help them. In 2001, I was a non-clinical student in training at a level 1 trauma hospital in the Midwest. (...) The night in question, one of the residents asked me to go to the infectious diseases unit to translate for a newly admitted undocumented patient. [End Page 152]The patient was in his early twenties. This was the second time he had arrived in the US after walking through the desert. His diagnosis was dire—he drank stagnant water during his journey, and he had acquired an aggressive type of infection whose origin (viral? bacterial?) the specialists could not as yet determine. After initial testing, the doctors discovered that he was also suffering from full-blown AIDS.When I entered the room where the young man was lying, shaking violently due to a high fever, I felt deep anger and profound sadness. People looked at the young man with a mixture of disdain and anger. He was, after all, "wasting" the hospital's precious resources. At the same time, his immediate reaction after hearing me speak to him in his native language and sensing that I understood him, that is, that I could empathize with his fears, made me decide that I would do whatever I could to help him.After a brief initial conversation, it became painfully clear that he neither had any formal education nor did he understand the gravity of his medical condition, aggravated by AIDS. Besides that, he did not comprehend what was being done to him, which included the use of experimental drugs that he had not consented to take.My task then morphed from an untrained translator trying to help someone understand a foreign language to a new ally trying to help someone navigate the short-, mid-, and long-term life-altering decisions he would have to make without full knowledge or understanding of his actual circumstances. In short, I quickly transition from interpreter to advocate.It was probably the result of the stress and pressure I suddenly found myself experiencing, but I remember thinking back to my high school etymologies class and realizing that the verb "to advocate," from ad-vocare, means to support, defend, or protect someone. "When did I commit to any of those things?" I thought to myself. And then I immediately remember thinking, "Not at all! I did not commit to any of those things! All I said "yes" to was to lend my voice for a couple of minutes so that a doctor and a patient could understand each other. I surely did not intend to lend my voice to someone who has no voice!"A second and even bigger surprise for me, however, was that, in the process of translating, I could hear what the young man and the physician were truly saying to each other. In other words, as my mouth moved to speak, now in Spanish and now in English, I was able to capture and translate not only the words being said but also the feelings and emotions and the deeper meaning of what was being communicated. For example, when the young man asked, "¿Voy a estar bien?" ["Am I going to be OK?"] I could "hear" his real question, "Am I dying?" When the doctor said, "Your CD4+ cell count is less than 200," I heard him say, "Couldn't you have chosen another place to die?" Conscious of my role, however, I limited myself to performing my duties as professionally and precisely as possible.The following day, I consulted with a professional interpreter who worked at the same hospital, and I asked her how I could be more helpful to the young man. As she advised me how to proceed, I could tell she was truly torn.On the one hand, she wanted me to proceed with the outmost professionalism, to remain "neutral," "objective," and to avoid, at all... (shrink)

In “There’s No Harm in Talking,” McCarthy, Homan, and Rozier note that in recent years theological bioethicists have not felt the need to translate their insights for a broader pluralistic a...

BackgroundThe global expansion of biobanks has led to a range of bioethical concerns related to consent, privacy, control, ownership, and disclosure. As an opportunity to engage broader audiences on these concerns, bioethicists have welcomed the commercial success of Rebecca Skloot’s 2010 bestselling book The Immortal Life of Henrietta Lacks. To assess the impact of the book on discussion within the media and popular culture more generally, we systematically analyzed the ethics-related themes emphasized in reviews and articles about the book, and (...) in interviews and profiles of Skloot.MethodsWe conducted a content analysis of a population of relevant English-language articles and transcripts (n = 125) produced by news organizations and publications in the U.S., Canada, Great Britain/Ireland, and Australia/New Zealand. We scored each article for the emphasis and appearance of 9 ethics-related themes. These were informed consent, welfare of the vulnerable, compensation, scientific progress, control/access, accountability/oversight, privacy, public education, and advocacy.ResultsThe informed consent theme dominated media discussion, with almost 39.2 percent of articles/transcripts featuring the theme as a major focus and 44.8 percent emphasizing the theme as a minor focus. Other prominent themes and frames of reference focused on the welfare of the vulnerable (18.4 percent major emphasis; 36.0 percent minor emphasis), and donor compensation (19.2 percent major; 52.8 percent minor). Ethical themes that comprised a second tier of prominence included those of scientific progress, control/access, and accountability/oversight. The least prominent themes were privacy, public education, and advocacy.ConclusionsThe book has been praised as an opportunity to elevate media discussion of bioethics, but such claims should be re-considered. The relatively narrow focus on informed consent in the media discussion generated by Skloot’s book may limit the ability of ethicists and advocates to elevate attention to donor control, compensation, patenting, privacy, and other ethical issues. Still, ethicists should view the book and a pending major TV film translation as opportunities to highlight through media outreach, consultation exercises and public forums a broader range of bioethical concerns that would otherwise be under-emphasized in news coverage. Such efforts, however, need to be carefully planned and evaluated. (shrink)

What is bioethics to do when it strives to assess the quality of its research and scholarship and when it needs to justify its work to prospective funders, especially a funder like the National Institutes of Health that privileges empirical discovery? In “A Conceptual Model for the Translation of Bioethics Research and Scholarship,” Debra Mathews and colleagues take an important first step at advancing an answer. The authors describe what they call a translational process, whereby bioethics (...) “outputs” are translated into changes of three types: in thinking, practice, and policy. It goes nearly without saying that bioethics research and scholarship must be held accountable for changes in thinking. What raison d'etre do we have if not to deepen thinking, question assumptions, and encourage ourselves and others to examine hard issues from novel approaches? Assuredly it is hard to assess quality, and even harder to assess specific changes in thinking for which high-quality scholarship may be responsible, but it is a necessary goal and one for which we should strive without reservation. Bioethics should also affect policy and practice. We should document how it does and the extent to which it does as often and as prominently as possible. However, let us be wary of pinning too much on practice and policy changes as the primary way of establishing bioethics’ worth. (shrink)

In 2017 and 2019, two research teams claimed ‘proof of principle’ for artificial womb technology (AWT). AWT has long been a subject of speculation in bioethical literature, with broad consensus that it is a welcome development. Despite this, little attention is afforded to more immediate ethical problems in the development of AWT, particularly as an alternative to neonatal intensive care. To start this conversation, I consider whether experimental AWT is innovative treatment or medical research. The research–treatment distinction, pervasive in regulation (...) worldwide, is intended to isolate research activities and subject them to a greater degree of oversight. I argue that there is a tendency in the literature to conceptualize AWT for partial ectogenesis as innovative treatment. However, there are sufficiently serious ethical concerns with experimental AWT that mean that it must not be first used on humans on the basis that it is a ‘beneficial treatment’. First, I outline the prospects for translation of AWT animal studies into treatment for human preterms. Second, I challenge the conceptualizations of experimental AWT as innovative treatment. It must be considered medical research to reflect the investigatory nature of the process and guarantee sufficient protections for subjects. Identifying that AWT is research is crucial in formulating further ethico‐legal questions regarding the experimental use of AWT. Third, I demonstrate that clinical trials will be a necessary part of the clinical translation of AWT because of requirements laid out by regulators. I consider the justification for clinical trials and highlight some of the crucial ethical questions about the conditions under which they should proceed. (shrink)

Calls for the “translation” of research from bench to bedside are increasingly demanding. What is translation, and why does it matter? We sketch the recent history of outcome-oriented translational research in the United States, with a particular focus on the Roadmap Initiative of the National Institutes of Health (Bethesda, MD). Our main example of contemporary translational research is stem cell research, which has superseded genomics as the translational object of choice. We explore the nature of and obstacles (...) to translational research and assess the ethical and biomedical challenges of embracing a translational ethos. (shrink)