Bioethical Decision-making Research Articles

CONFLICTS BETWEEN BIOETHICS AND NATIONAL VALUES

Background: Bioethics addresses complex moral conundrums in medicine, health, and human rights that usually run counter to national and religious values. Specific Background: These tensions are especially evident in bioethical concerns such as genetic engineering, reproductive technologies, and euthanasia since societal perspectives are influenced by long-standing cultural, religious, and social norms. Knowledge Gap: While bioethics has been extensively studied globally, less research has been done to look at how national values in particular influence bioethical decision-making, especially in specific culture contexts like Uzbek thought. This study aims to investigate the relationship between national values and bioethics, with a focus on the influence of Uzbekistan's religious and cultural beliefs. Results: The results demonstrate that bioethical quandaries arise when modern medical technology do not align with the moral, legal, and spiritual frameworks of traditional Uzbek society. Important factors to take into account include the impact of family traditions, the need of maintaining moral standards in society, and religious opposition to organ donation and euthanasia. Novelty: This study clarifies how national values impact public opinions of bioethics, particularly in cultures that prioritize community values above individual ones, by presenting the Uzbek perspective in a fresh manner. Implications: Understanding these intersections enables healthcare practitioners and governments to make bioethical decisions that uphold human rights and national values in culturally sensitive countries.

Computational support for bioethical decision-making in palliative care

Computational support for bioethical decision-making in palliative care

Reimagining the Discipleship of Marriage Through the Lens of Mark: A Theological Reflection for Bioethical Decision-Making on Contraception in Catholic Healthcare and Marital Life.

Mark 10:13-16, interpreted within the broader context of the Gospel of Mark, using a moral exegetical framework, provides a lens for what welcoming the children refers to in sacramental marital discipleship. Building upon the narrative ethics of Mark, the words and deeds of Jesus, magisterial teachings and writings allow these verses to be reimagined to unveil an interpretation and a praxis for marital and moral life. Accepting the gift of a child in the natural order paves the way for discipleship and ushers in the kingdom of God. Just as Jesus welcomed the children, parents are called to welcome them through unhindered conjugal love. These reflections form a Catholic theology of married life and sexuality and a theology of children that the couple shares with Christ's thoughts and actions.

Cripping vulnerability: A disability bioethics approach to the case of early autism interventions

The relationships between neurodivergent and disabled communities, and healthcare practices, are marked by ambivalence. While there is a history of harmful and discriminatory practices, the clinical encounter also holds beneficial and empowering potential for neurodivergent and disabled people. To address this ambivalence, this paper’s central question is whether and how bioethical decision-making in healthcare settings can become more informed by critical insights from neurodiversity and disability studies. The bioethical debate in Western countries on early interventions for young autistic children will be the case animating my theoretical propositions. I provide a working definition of such a ‘disability approach to bioethics’ and review the obstacles in both mainstream bioethics and disability studies this approach has to overcome. Then, the ethical concept of vulnerability, its feminist reinterpretation, and its potential for disability bioethics are introduced. Instead of using the concept in its traditional, problematic sense, I propose that vulnerability can be reclaimed, or cripped, by neurodiversity and disability movements to do the exact opposite: to trouble the demarcation between the vulnerable and the invulnerable, to stress structural injustices over individual deficits, and to justify solidaristic, empowering interventions over paternalist ones. Finally, this ‘cripped account of vulnerability’ will be applied to the case of early autism intervention.

Neonatal Intensive Care: Is professional Status Related to Critical Bioethical Decision-Making?

The bioethical dilemmas that arise concerning the provision of intensive care to premature or diseased neonates are among the ten most important ethical challenges in the field of health...

Artificial intelligence for support of the bioethical decision-making of nurses related to end of life issues

Healthprofessionals,especiallynurses,areoftencompelledtomakedecisionsinfaceofbioethicalissuescommonlyrelatedtointensivecareenvironments.Duetotheircomplexitiesandparticularities,theseissuesendupgeneratinggreatphysicalandemotionalstrainontheprofessional.Therefore,thisstudyraisedthehypothesisthatartificialintelligencetechniquescouldassistnursesinmakingbioethicaldecisions.Forthis,agroupoffourspecialistsinthefieldofnursingpreparedandansweredaquestionnairebasedonahypotheticalICUscenario.Thedatacollectedfromtheresponseswerethenusedinthetrainingandevaluationoffivemachinelearning(ML)algorithms.Theresultsculminatedfromacomparativestudybetweenthealgorithmspointtotheveracityofthehypothesisraisedinthisresearch,byshowingthatitispossibletoadoptMLalgorithmstosupportbioethicaldecisionmaking

Bioethical Decisions in Neonatal Intensive Care: Neonatologists' Self-Reported Practices in Greek NICUs.

This study presents, for the first time, empirical data on practices regarding bioethical decision-making in treatment of preterm and ill newborns in Greece. The aim of the study was to: (a) record self-reported practices and involvement of Greek physicians in decisions of withholding and withdrawing neonatal intensive care, and (b) explore the implication of cultural, ethical, and professional parameters in decision-making. Methods: 71 physicians, employed fulltime in all public Neonatal Intensive Care Units (NICUs) (n = 17) in Greece, completed an anonymous questionnaire between May 2009 and May 2011. Results: One-third of the physicians in our sample admitted that they have, at least once in the past, decided the limitation of intensive care of a newborn close to death (37.7%) and/or a newborn with unfavorable neurological prognosis (30.8%). The higher the physicians’ support towards the value of quality of human life, the more probable it was that they had taken a decision to withhold or withdraw neonatal intensive care (p < 0.05). Conclusions: Our research shows that Greek NICU physicians report considerably lower levels of ethical decision-making regarding preterm and ill newborns compared to their counterparts in other European countries. Clinical practices and attitudes towards ethical decision-making appear to be influenced mainly by the Greek physicians’ values.

Telling, Hearing, and Believing: A Critical Analysis of Narrative Bioethics.

Narrative ethics taps into an inherent human need to tell our own stories centred on our own moral values and to have those stories heard and acknowledged. However, not everyone's words are afforded equal power. The use of narrative ethics in bioethical decision-making is problematized by a disparity in whose stories are told, whose stories are heard, and whose stories are believed. Here, I conduct an analysis of narrative ethics through a critical theory lens to show how entrenched patterns of narrative neglect in medicine are harming not only our capacity to make use of narrative ethics but also our capacity to deliver effective healthcare. To illustrate this point, I use three examples where the patient's gender affects how their stories unfold: autism, weight, and pain management. From these, I argue that the use of narrative ethics without the application of a critical theory lens risks the exacerbation of what Miranda Fricker refers to as "testimonial injustice," the prima facie harm experienced by individuals whose credibility is undermined by others' prejudices. Finally, I suggest that narrative ethics can be a powerful tool for mitigating oppressive practices in medicine if we couple it with critical analysis that enables us to understand the power dynamics at play in storytelling.

Critical Thinking in Science Education: Can Bioethical Issues and Questioning Strategies Increase Scientific Understandings?

Many North American school districts and post-secondary academic institutions are acknowledging the importance of becoming a critical thinker. Future citizens will need to be to informed consumers of technology, science, sociology, and ethics, to name a few. After all, the world has become vastly more complicated, necessitating such skills as reasonableness and logical thinking. By engaging students at a crucial time in their developmental process, we can lay the foundation for good critical thinkers. The purpose of this paper is to examine the importance of critical thinking in science education, both at the secondary and post-secondary levels. Evidence regarding its suitability will be drawn from critical thinking and science education literature, as well as previous studies using bioethical decision-making and generic question stem strategies with middle school and university students.

Investigation of the visual attention role in clinical bioethics decision-making using machine learning algorithms

Abstract This study proposes the use of a computational approach based on machine learning (ML) algorithms to build predictive models using eye tracking data. Our intention is to provide results that may support the study of medical investigation in the decision-making process in clinical bioethics, particularly in this work, in cases of euthanasia. The data used in the approach were collected from 75 students of the nursing undergraduate course using an eye tracker. The available data were processed through feature selection methods, and were later used to create models capable of predicting the euthanasia decision through ML algorithms. Statistical experiments showed that the predictive model resultant from the multilayer perceptron (MLP) algorithm led to the best performance compared with the other tested algorithms, presenting an accuracy of 90.7% and a mean area under the ROC curve of 0.90. Interesting knowledge (patterns and rules) for the studied bioethical decision-making was extracted using simulations with MLP models and inspecting the obtained decision-tree rules. The good performance shown by the obtained MLP predictive model demonstrates that the proposed investigation approach may be used to test scientific hypotheses related to visual attention and decision-making.

Bioethics, health technology reassessment, and management.

Health Technology Reassessment (HTR) is an emerging area of health services and policy research that supports optimal management of technologies throughout their lifecycle. As a structured, evidence-based assessment of the clinical, economic, social, and ethical impacts of existing technologies, HTR is a means of achieving optimal use, managed exit, and better value for money from technologies used in healthcare. This has been documented as raising ethical concerns among clinicians who are providing direct patient care, particularly when managed exit may be the goal. This article discusses the ethical considerations relevant to clinicians and HTR, using a principles' approach to bioethical decision-making.

A Tomada de Decisão (Bio)ética: Estudo Preliminar Utilizando o Mobile Eye Tracking

RESUMO A tomada de decisão é uma das dimensões essenciais da formação do profissional da saúde, como mencionado nas atuais Diretrizes Curriculares Nacionais do Curso de Graduação em Medicina. O processo decisório, no âmbito da saúde, envolve diferentes aspectos, incluindo os elementos (bio)éticos. Nesse sentido, pesquisas que investiguem a tomada de decisão em (bio)ética poderão elucidar passos ainda não completamente esclarecidos, permitindo uma construção mais efetiva das competências em (bio)ética, na graduação e na pós-graduação. Diante desta perspectiva, o objetivo deste estudo é explorar possibilidades de uso do Mobile Eye Tracking para o estudo do papel da atenção visual – durante a exibição de filmes de cinema – no processo decisório em (bio)ética.

Integrating Socio-Scientific Issues to Enhance the Bioethical Decision-Making Skills of High School Students

Scientific literacy has been focused on the construction of students’ knowledge to use appropriate and meaningful concepts, critically think, and make balanced, well-informed decisions relevant to their lives. This study presents the effects of integrating socio-scientific issues to enhance the bioethical decision-making skills of biology students. Using a quasi-experimental research design, results of the independent and related samples t-test on the pre- and posttest mean scores of 72 students significantly revealed that integrating socio-scientific issues in biology lessons are useful to enhance their bioethical decision-making skills. Moreover, as socio-scientific issues were integrated in their lessons, students’ classroom interactions and argumentations improved significantly and enabled them to give a positive, more elaborate, and in-depth responses with a wider range of explanations.

Ubel, Peter: Critical decisions: how you and your doctor can make the right medical choices together

Though written for a popular audience, Peter Ubel’s Critical Decisions: How You and Your Doctor Can Make the Right Choices Together will be important reading for medical practitioners and theorists alike. In it, Ubel presents a new approach for making medical decisions directly to health care consumers, drawing on his research on the psychology of medical decision-making and training in medicine and bioethics. This approach focuses on communication between doctors and patients rather than on patients’ rights or physicians’ duties. Given the target audience, the book is rarely explicit about its arguments. But implicit in Ubel’s narrative is the claim that, like it or not, there is a new order in medicine, where patients and physicians must literally work together to make medical decisions; and, moreover, that there are empirically measurable ways to assess our failures and increase our successes at doing so. His narrative is engaging and fresh. For its purposes, the book is excellent. However, for the readers of this journal, it is likely to reveal unquestioned assumptions and unasked questions that deserve Ubel’s attention. After summarizing the text, I will return to them by way of conclusion. Critical Decisions has four parts (and thirteen chapters). Part I describes the ‘‘rise of the empowered patient’’ (p. 21), by covering familiar ground to David Rothman [1] on the increasing influence of academic bioethics on patient care from 1970 to 1995. One of Ubel’s most evident rhetorical gifts is his ability to weave powerfully his own personal experiences into the narrative, adding meaning to his claims and supporting his authorial credibility. In the beginning of Part I, he describes a 1995 case in which he was the on-call ethics consultant tasked with aiding a surgeon make a preference-sensitive decision for a cancer patient whose preferences were unknown. Ubel compares that patient’s experience to Betty Ford’s, who, in 1975, consented to a biopsy but ended up receiving a radical mastectomy while under anesthetic, without being informed of her diagnosis or asked of her opinion

How organizational context affects bioethical decision-making: Pharmacists' management of gatekeeping processes in retail and hospital settings

Social science studies of bioethics demonstrate that ethics are highly contextual, functioning differently across local settings as actors make daily decisions “on the ground.” Sociological studies that demonstrate the key role organizations play in shaping ethical decision-making have disproportionately focused on physicians and nurses working in hospital settings where they contend with life and death issues. This study broadens our understanding of the contexts of ethical decision-making by empirically examining understudied healthcare professionals – pharmacists – working in two organizational settings, retail and hospital, where they act as gatekeepers to regulated goods and services as they contend with ethical issues ranging from the serious to the mundane. This study asks: How do organizations shape pharmacists' identification, negotiation, and resolution of ethical challenges; in other words, how do organizations shape pharmacists' gatekeeping processes? Based on 95 semi-structured interviews with U.S. pharmacists practicing in retail and hospital pharmacies conducted between September 2009 and May 2011, this research finds that organizations influence ethical decision-making by shaping how pharmacists construct four gatekeeping processes: medical, legal, fiscal, and moral. Each gatekeeping process manifests differently across organizations due to how these settings structure inter-professional power dynamics, proximity to patients, and means of accessing information. Findings suggest new directions for theorizing about ethical decision-making in medical contexts by drawing attention to new ethical actors, new organizational settings, an expanded definition of ethical challenges, and a broader conceptualization of gatekeeping.

An integrated ethical approach to bioethical decision-making: A proposed model for ministers

This article outlined a model for guidance in ‘doing’ bioethics in a Reformed context. The proposed model suggested that in order to arrive at responsible ethical decisions, one must refer to both contextual elements and theory. The theoretical grounding for this model was based on the integration of a deontological and virtue ethics approach, arguing that virtue enables persons to know and desire the right moral ends and motivates them to carry out appropriate action toward achieving these ends. An integrative model opens up the possibility whereby bioethics as a systematic tool provides the individual decision-maker with the critical-reflective skills and justification for the ultimate choice that is lacking in the general decision-making processes. This could lead to clearer thinking and increased confidence in the justification of decisions within the Reformed tradition. The proposed hermeneutical perspective on ethical decision-making represents a shift in views about the nature of knowledge and the process of how we come to know. The key to this hermeneutical approach is to acknowledge the dialectic between the universal and the subjectivity of human relations. Working in specific religious communities, one needs to take cognisance of the fact that knowledge is situated in the context of human relationships in which the interpreter participates when articulating the meaning of bioethical experiences. Another aspect that is anticipated lies in the realisation that people struggling with bioethical dilemmas should not be viewed as isolated individuals, but as members of a broader faith community.‘n Geïntegreerde etiese benadering tot bioetiese besluitneming: Voorgestelde model vir predikante. Hierdie artikel het ‘n model geskets wat moontlike riglyne aantoon vir die beoefening van bioetiek binne ‘n Gereformeerde konteks. Die voorgestelde model argumenteer dat verwysing na beide kontekstuele elemente en teorie onafwendbaar is om tot verantwoordelike bioetiese besluite te kan kom. Die teoretiese begronding vir hierdie model het op die integrasie van deontologiese- en karakteretiek berus en is gebaseer op die argument dat karakteretiek persone in staat stel om die regte morele doelwitte te ken en motiveer hulle ook om die nodige stappe te neem om dit te bereik. ‘n Geïntegreerde model skep die moontlikheid vir bioetiek as ‘n sistematiese stuk gereedskap om die individuele besluitnemer met die kritiesreflektiewe vaardighede en gronde vir regverdiging van die finale keuses toe te rus, aspekte wat in algemene besluitnemingsprosesse ontbreek. Dit kan ook lei tot helderder denke en groter vertroue in die motivering van besluite binne die Gereformeerde tradisie. Die voorgestelde hermeneutiese perspektief op etiese besluitneming verteenwoordig ‘n verskuiwing in aanvaarde sienings oor die aard van kennis en die prosesse wat tot kennis lei. Die sleutel tot hierdie hermeneutiese benadering is om erkenning te gee aan die dialektiek tussen die universele en subjektiewe menslike verhoudings. Dit is veronderstel dat persone wat in spesifieke geloofsgemeenskappe werk daarop ag moet slaan dat kennis binne die konteks van menslike verhoudings – waarbinne die interpreteerder funksioneer – gesetel is wanneer die betekenis van bioetiese ervaring geartikuleer word. ‘n Verdere aspek was die erkenning van die feit dat mense wat met bioetiese dilemmas worstel nie as geïsoleerde individue beskou moet word nie, maar as lede van ‘n breër geloofsgemeenskap.

The Uses and Abuses of Moral Theory in Bioethics

Moral theory is an important guide to bioethical decision-making, but it can confuse and mislead those who offer ethical advice to clinicians and researchers, delaying decisions that must be made in a timely fashion. In this paper I examine the ways moral theory can lead bioethicists astray. Absent a sensitivity to the empirical realities of ethical problems, moral theory 1) contributes to the disappearance of the persons caught in an ethical quandary, 2) focuses on the puzzle-solving rather than examining the conditions that generate moral problems, and 3) universalizes ethical dilemmas, overlooking local processes for resolving moral questions. Taken together, empirically informed moral theory and theoretically informed empirical research can help bioethicists transcend the is/ought problem in ethical work.

Growing Respect for Opposition

In this second installment of essays selected during our fortieth anniversary contest last year, authors look at how bioethics is done, paying particular attention to respect for other points of view, rethinking how issues are framed, and developing a common moral framework that can reach across disciplines. The next forty years will see us through the most imperative issues in bioethics and public health today. We will face continuing challenges regarding health care reform, reproductive freedom, and euthanasia. We will confront growing disparities stemming from global development and cope with complex questions of social and environmental justice. We will grapple with the health effects of global climate change and with the implications of the rapidly expanding role of genomics in health research and practice. Bioethicists will face no shortage of contentious issues in the coming decades, but as I begin my career, I wonder if we are prepared to meet them. With the topics of normative debate so ripe for discussion, it is the process of decision-making in bioethics that I believe merits more attention. The most pressing issue for bioethics may not be in the content of moral discourse, but rather in the way we engage in it. Fundamentally a discipline based in dialogue, bioethics depends on participation--on the articulation of values and principles and the willingness to deliberate with those who disagree. Particularly with the aim of informing policy, dialogue is a cornerstone of bioethics that is swiftly eroding. Today, dialogue among bioethicists, policy-makers, and the public is far from robust, yet it will be key to addressing the bioethics debates of the future. While democratic theory has long underlain arguments for the inclusion of public reason in public policy, there are several factors that raise public engagement over the next forty years to new importance. First, the normative dimensions of many of the policies we face will arise from the development of new technologies for which the harms and benefits are not yet known. Whole-genome sequencing, tissue engineering, nanotechnology, and stem cell therapy are just a few of the nascent technologies that hold uncertain consequences when introduced to medicine, public health, and consumer markets. Furthermore, the increasingly rapid translation of technology to the public results in access to technology before its consequences can be fully recognized. Coupled with what are often less-than-conclusive claims about benefits and about who will gain those benefits, these issues pose additional challenges to ethical decision-making. Relying on experts to review evidence and balance risks and benefits will not suffice when evidence is conflicting, benefits are unclear, and harms may be unrecognized. The controversy around direct-to-consumer genetic testing and the utility of personalized medicine are case examples where ethical policy development will require consulting many more diverse perspectives than have been sought in the past, including those of the public. Second, we live in a society more pluralistic than ever before. Particularly in the United States, but globally as well, each society holds within it a growing number of value systems. The single most important issue facing bioethics stems from the diversity of accepted frameworks, beliefs, and moral values held by the population today. The work of bioethics in reaching one well-justified and decisive course of action is no longer sufficient. As scholars have recognized, policy-making in pluralistic societies will not be a matter of choosing the single justified option, but rather, choosing from several mutually exclusive options that are each justified under a reasonable, yet distinct, set of values. (1) In response to the changing nature of policy-making in pluralistic societies, a number of bioethics scholars have suggested that the principles of deliberative democracy may be the way forward. …

Posters * Cross-Border Reproductive Care

Introduction:This paper provides an overview of reproductive medical travel in the Asia-Pacific region, and some of the significant anthropological considerations it raises. It aims to contribute to debates on the implications of reproductive travel for reproductive rights. I give a summary of reproductive travel in the region, focusing upon Thailand, India and South Korea, which have developed a sophisticated and profitable reproductive trade. While the services in these countries cater for their own populations, they also provide assisted reproductive services for wealthy patients from the region seeking services not available in their home countries, and for patients from other wealthy countries seeking to avoid the costs, waits, limitations or regulatory boundaries in their home countries. I explore the consequences through case studies and the policy and regulatory frameworks that exist to regulate this trade within the region.Methods:The paper is a qualitative review of issues raised by anthropological work on this issue in the Asian region combined with preliminary case studies conducted with 6 patients travelling for IVF services to a clinic in Thailand.Results:The growth of travel for reproductive medical services generates some important policy questions such as equity in access to services, protection of vulnerable populations and appropriate regulatory mechanisms versus reproductive autonomy. A comprehensive examination of the challenges raised by medical travel must include consideration of the socio-cultural and political impacts for those involved in the trade. Reproductive travel involves the intensification of stratification and commodification of the body and is riven with issues pertaining to race and class. Choices of clinic, ova and sperm donors and embryos carry considerations of race, ‘whiteness’, sex, class and eugenic potential determined by market forces. Countries in the Asia region struggle to meet the regulatory challenges the trade poses.Conclusions:A major obstacle to developing policies, monitoring and evaluation of cross-border reproductive care is the lack of reliable and comparable data on the extent and practice of reproductive travel. Although reliable quantitative data is urgently required, qualitative data (i.e., ethnographic accounts) also has a useful role to play, particularly in monitoring the actual practice of clinics and experiences of patients on the ground, and in understanding the effects of differences in cultural, religious and social norms and grounded bioethical decision-making. Copyright © 2011 European Society of Human Reproduction and Embryology

How Many Principles for Public Health Ethics?~!2008-02-04~!2008-05-01~!2008-06-10~!

General moral (ethical) principles play a prominent role in certain methods of moral reasoning and ethical decision-making in bioethics and public health. Examples include the principles of respect for autonomy, beneficence, nonmaleficence, and justice. Some accounts of ethics in public health have pointed to additional principles related to social and environmental concerns, such as the precautionary principle and principles of solidarity or social cohesion. This article provides an overview of principle-based methods of moral reasoning as they apply to public health ethics including a summary of advantages and disadvantages of methods of moral reasoning that rely upon general principles of moral reasoning. Drawing upon the literature on public health ethics, examples are provided of additional principles, obligations, and rules that may be useful for analyzing complex ethical issues in public health. A framework is outlined that takes into consideration the interplay of ethical principles and rules at individual, community, national, and global levels. Concepts such as the precautionary principle and solidarity are shown to be useful to public health ethics to the extent that they can be shown to provide worthwhile guidance and information above and beyond principles of beneficence, nonmaleficence, and justice, and the clusters of rules and maxims that are linked to these moral principles. Future directions likely to be productive include further work on areas of public health ethics such as public trust, community empowerment, the rights of individuals who are targeted (or not targeted) by public health interventions, individual and community resilience and wellbeing, and further clarification of principles, obligations, and rules in public health disciplines such as environmental science, prevention and control of chronic and infectious diseases, genomics, and global health.