Bioethical Challenges Research Articles

Bioethical, medical, and social problems in children with growth hormone deficiency

Background. Medical and practical advancements have brought about new possibilities for providing healthcare to people, but with it comes new bioethical challenges. In many pediatric medical institutions, consultations on pediatric ethics have become common practice. However, the bioethical problems related to short children have not been studied enough yet. The purpose of this study is to identify and analyze bioethical, medical, and social issues in children with growth hormone deficiency (GHD), which can potentially hinder timely diagnosis and adherence to replacement therapy. Materials and methods. The identification of bioethical, medical, and social problems was conducted at the Odesa Regional Children’s Hospital between 2012 and 2020. The study involved a cohort of 94 children with GHD and short stature (SDS 3.4 ± 0.1), aged 7.2 ± 0.4 years, as well as their parents (124 individuals). The study was based on a questionnaire survey, history taking, interviews, objective examination of patients, and analysis of medical records. Results. The study found evidence of violations of the Hippocratic principle of help and assistance (“do good”) in the form of delayed or incorrect diagnosis in 10.6 % of cases and incomplete adherence to local protocols for managing sick children in 6.4 % of cases. Violations of the Hippocratic principle of non-harm (“first, do no harm”) were evidenced by adverse events (16.0 %) and serious adverse events (3.2 %) during replacement therapy. Children with GHD were subject to violations of social justice, such as neglect (8.5 %), socio-economic problems in the family (12.8 %), and external environmental restrictions (9.6 %). Violations of the personal autonomy of children with GНD inclu­ded physical and psychological abuse in the family (29.8 and 38.3 % of cases, respectively), stigmatization (25.5 %), school bullying (27.2 %), medical neglect (5.3 %), medical paternalism (6.4 %), and overprotection (10.6 %). Conclusions. In the management of children with GHD, various bioethical, medical, and social issues have come to light. Low adherence to recombinant human growth hormone therapy can be considered an independent bioethical problem associated with medical paternalism and medical neglect.

Bioethical challenges in postwar development aid: The Rwandan case study.

This article considers aspects of a development aid that provides medical support to strengthen pediatric orthopedics in Rwanda. We present part of the Afriquia foundation work, a nonprofit foundation from Poland involved in supporting the medical sector in Rwanda as a sign of global solidarity and the human right to health. The main foundation's activity is the treatment of orthopedic problems among Rwandan citizens. We present a case study of two children under the care of the Afiquia foundation. 11-year-old Seraphine treated due to the consequences of right tibia osteomyelitis and 11-year-old Lavi suffering from osteogenesis imperfecta. Both children were treated surgically in Poland due to Rwanda's lack of treatment possibilities. After the applied treatment, Seraphine walks correctly without crutches and can attend school and thrive among her peers. Lavi has not sustained any fragility fracture since the surgery in Poland. He is healthy and constantly ongoing his rehabilitation including gait training. The described cases initiated development aid in Rwanda, supplying hospitals with orthopedic implants and training medical staff. The growing number of humanitarian crises across the globe and the people affected requires increasing organizations involved in providing relief. The emphasis should be on global education, aiming to make the recipients reflect and prepare them to face humanitarian crises.

How Populism Affects Bioethics.

This article aims at raising awareness about the intersection of populism and bioethics. It argues that illiberal forms of populism may have negative consequences on the evolution of bioethics as a discipline and on its practical objectives. It identifies at least seven potential negative effects: (1) The rise of populist leaders fosters "epistemological populism," devaluing the expert and scientific perspectives on which bioethics is usually based, potentially steering policies away from evidence-based foundations. (2) The impact of "moral populism" is evident in legislative prioritization of the "morality of common people," often solicited through popular consultations on issues like abortion, drug legalization, or LGBT issues. (3)Populist distrust in autonomous governmental agencies and advisory bodies, including national bioethics commissions, can compromise expert advice, challenging both their authority and decisions. (4) Populists may erode transparency by undermining institutions responsible for it, hindering access to vital information for bioethical research. (5)"Medical populism" creates adversarial dynamics, prompting politicians to make simplistic healthcare policy decisions based on political rather than informed criteria, adversely affecting vulnerable populations. (6)Radical-right populist parties' "welfare chauvinism" may shape healthcare policies, impacting service access and resource allocation, disproportionately affecting vulnerable groups such as migrants, but indirectly affecting the rest of the population. (7)Nationalist sentiments associated with populism may obstruct international collaborations, posing challenges for global bioethics that seeks to address ethical concerns beyond national borders. In summary, these dynamics raise significant bioethical concerns encompassing evidence-based decision-making, transparency, healthcare equity, and global collaboration. How bioethicists may respond to these challenges is discussed.

Islamic perspectives on preconception, prenatal, and perinatal counseling.

With advances in prenatal imaging, genetic testing, and medical treatment of premature neonates, new bioethical challenges have arisen. Many Muslims turn to their faith and religious leaders to help navigate these novel challenges. This article briefly discusses the factors that are involved in religious leaders issuing a fatwa, or religious opinion. Using clinical scenarios, this article reviews the current discourse amongst Islamic scholars and laws in Muslim-majority countries regarding challenging bioethical topics surrounding preconception counseling, antenatal testing and termination of pregnancy, as well as Islamic scholars' attempts to determine a minimum gestational age of viability using primary religious texts, the Quran and hadith. Challenges and shortcomings in the Islamic perspective on these issues are also addressed to highlight areas in which further research should be pursued. A deeper understanding of Islamic religious perspectives on these topics can help clinicians in providing care that is informed by patients' cultural and religious values.

Bioethical Challenges at the End of Life: An Ethical Guide in Catholic Perspective by Ralph Weimann

Bioethical Challenges at the End of Life: An Ethical Guide in Catholic Perspective by Ralph Weimann

Transmissão vertical do HIV na rede de saúde: reflexões bioéticas sobre gênero e cuidado a partir de um caso emblemático

Abstract In a still worrying epidemic scenario, the prevention of Vertical Transmission (VT) of HIV poses complex problems, due to the individual, social, and moral vulnerabilities of women living with the virus, in addition to the weaknesses of the health network. Based on an emblematic case, this study sought to understand the bioethical challenges of HIV VT prevention in the scope of the Porto Alegre/RS Committee. The analytical categories developed reflect on how the production of care is articulated, on the one hand, with relational discourses and practices based on gender and intersected by race and social class and, on the other, with programmatic vulnerabilities of health policies. A process of extreme stigmatization was revealed, in which the few offers for cisgender women were aimed toward reproductive regulation and perpetuated dynamics of structural violence. We discuss ways of building care that incorporates a decolonial perspective and seeks to produce equity and social justice by recognizing women’s trajectories.

Scarce resources, public health and professional care: the COVID-19 pandemic exacerbating bioethical conflicts — findings from global qualitative expert interviews

BackgroundSince spring 2020, the SARS-CoV-2 virus has spread worldwide, causing dramatic global consequences in terms of medical, care, economic, cultural and bioethical dimensions. Although the resulting conflicts initially appeared to be quite similar in most countries, a closer look reveals a country-specific intensification and differentiation of issues. Our study focused on understanding and highlighting bioethical conflicts that were triggered, exposed or intensified by the COVID-19 pandemic in low and middle-income countries (LMICs) and high-income countries (HICs).MethodsWe conducted qualitative interviews with 39 ethics experts from 34 countries (Argentina, Australia, Austria, Brazil, Canada, Colombia, Denmark, Ecuador, Ethiopia, France, Germany, India, Italy, Israel, Japan, Kyrgyzstan, Mexico, Nigeria, Oman, Pakistan, Paraguay, Poland, Romania, Russia, Singapore, South Korea, Spain, Sweden, South Africa, Tunisia, Türkiye, United-Kingdom, United States of America, Zambia) from November 2020 to March 2021. We analysed the interviews using qualitative content analysis.ResultsThe scale of the bioethical challenges between countries differed, as did coping strategies for meeting these challenges. Data analysis focused on:Resource scarcity in clinical contexts: Scarcity of medical resources led to the need to prioritize the care of some COVID-19 patients in clinical settings globally. Because this entails the postponement of treatment for other patients, the possibility of serious present or future harm to deprioritized patients was identified as a relevant issue.Health literacy: The pandemic demonstrated the significance of health literacy and its influence on the effective implementation of health measures.Inequality and vulnerable groups: The pandemic highlighted the context-sensitivity and intersectionality of the vulnerabilities of women and children in LMICs and the aged in HICs.Conflicts surrounding healthcare professionals: The COVID-19 outbreak underscored the tough working conditions for nurses and other health professionals, raising awareness of the need for reform.ConclusionThe pandemic exposed pre-existing structural problems in LMICs and HICs. Without neglecting individual contextual factors in the observed countries, we created a mosaic of different voices of experts in bioethics across the globe, drawing attention to the need for international solidarity in the context of a global crisis.

Book Review: Bioethical Challenges at the End of Life: An Ethical Guide in Catholic Perspective by Ralph Weimann

Book Review: <i>Bioethical Challenges at the End of Life: An Ethical Guide in Catholic Perspective</i> by Ralph Weimann

Teaching bioethical issues of COVID-19 pandemic through cinemeducation: A pilot study

In the last two years, the COVID-19 pandemic has presented new bioethical challenges for humanity. Cinemeducation uses movies and television series to enhance understanding of complex concepts. The present study assessed the effectiveness of cinemeducation in teaching bioethical issues related to the COVID-19 pandemic to students of health sciences and humanities. Participants were recruited from two classes of fourth-year undergraduate students: those enrolled in a bioethics course in the Human Biology degree program (n=34) and in a course on social transformation in the Humanities degree program (n=29). The two classes watched clips from the TV medical dramas Grey’s Anatomy, The Good Doctor, and Chicago Med in a guided two-hour classroom activity. Participation in the study was voluntary. To measure the activity’s effects on learning, a 10-question multiple-choice questionnaire was administered before and after the activity. To measure students’ satisfaction, a survey about the usefulness of the activity was also administered. A total of 45 out of 63 (71.4%) students completed the questionnaires. Scores in both groups were higher after the activity (p&lt; 0.05); mean improvements were 0.607 (95% CI: 1.16–0.45) for Human Biology students and 3.00 (95% CI: 3.87–2.12) for Humanities students. The improvement was higher in Humanities students (p &lt; 0.05). Students’ satisfaction was high in both groups. The findings imply that cinemeducation can be effective for teaching some complex bioethics concepts in relation to the COVID-19 pandemic.

How to embed ethics into laboratory research

ABSTRACT Health-related innovation in biotechnology requires anticipating potential bioethical implications. In this article, we present a strategy to embed ethics in a group of early-stage researchers performing research in gene therapy and regenerative medicine in the laboratory phase. We conducted a series of focus group meetings with early-stage researchers who work in biotechnology laboratories. The objective was to reflect on the bioethical challenges of their own work and to promote the integration of research ethics with laboratory practice. The activity was assessed with questionnaires completed by the researchers before and after the meetings, and the analyses of the focus groups’ content. As a result of the focus group series, all participants changed their perspectives about ethical issues regarding their planned research, developed the ability to reflect and debate on research ethics and had increased awareness of ethical issues in their own research activities. Half of them made changes in their research work. The study provides a concrete strategy to embed ethics and to strengthen responsibility in laboratory research. It is a strategy that allows to perform ethics reflection “on site” and in “real time” and complements the classic strategy of ethics assessment of the research protocol before starting the research procedure.

前言：宗教生命倫理學的當代意義

LANGUAGE NOTE | Document text in Chinese; abstract also in English. 本期探討宗教生命倫理學在當代的意義，涉及宗教生命倫理 學與世俗生命倫理學之問相互學習的BJ'能性、以及不同的宗教文 化之間進行對話的有益性，包括兩篇主題論文和15篇回應文章。(撮要取自內文首段) This issue of the journal covers two thematic essays and fifteen commentaries regarding the role of religious bioethics in contemporary society. Although bioethics was launched primarily by theologians in the last century, there have been debates about whether religious ideas are still relevant to today’s bioethical explorations. In addition, the essays in this issue indicate that bioethical dialogues do not occur only among peoples (such as Christians and Confucians) embracing different religious convictions in attempting to understand each other, but they also take place between religious bioethics and secular bioethics so that they may be able to learn from each other and make further reflections on pressing bioethical challenges facing contemporary society.

Practising in a post-truth world: Pandemic ethics can inform patient autonomy and clinical communication

The COVID-19 pandemic posed an unprecedented challenge to modern bioethical frameworks in the clinical setting. Now, as the pandemic stabilises and we learn to 'live with COVID', the medical community has a duty to evaluate its response to the challenge, and reassess our ethical reasoning, considering how we practise in the future. This article considers a number of clinical and bioethical challenges encountered by the author team and colleagues during the most severe waves of the pandemic. We argue that the changed clinical context may require reframing our ethical thought in such a manner as to adequately accommodate all parties in the clinical interaction. We argue that clinicians have become relatively disempowered by the 'infodemic', and do not necessarily have adequate skills or training to assess the scientific literature being published at an unprecedented rate. Conversely, we acknowledge that patients and families are more empowered by the infodemic, and bring this empowerment to bear on the clinical consultation. Sometimes these interactions can be unpleasant and threatening, and involve inviting clinicians to practise against best evidence or even illegally. Generally, these requests are framed within 'patient autonomy' (which some patients or families perceive to be unlimited), and several factors may prevent clinicians from adequately navigating these requests. In this article, we conclude that embracing a framework of shared decision-making (SDM), which openly acknowledges clinical expertise and in which patient and family autonomy is carefully balanced against other bioethics principles, could serve us well going forward. One such principle is the recognition of clinician expertise as holding weight in the clinical encounter, when framed in terms of non-maleficence and beneficence. Such a framework incorporates much of our learning and experience from advising and treating patients during the pandemic.

Psychosocial and bioethical challenges and developments for the future of vascularized composite allotransplantation: A scoping review and viewpoint of recent developments and clinical experiences in the field of vascularized composite allotransplantation.

Vascularized Composite Allotransplantation (VCA) has evolved in recent years, encompassing hand, face, uterus, penile, and lower extremity transplantation. Accordingly, without centralized oversight by United States Organ Procurement and Transplantation Network (OPTN) or European Programs, centers have developed their own practices and procedures that likely vary, and accordingly, present different levels of rigor to the evaluation process, internationally. The importance of psychosocial factors in the selection process and treatment course has been widely recognized, and therefore, several approaches have been developed to standardize and guide care of VCA candidates and recipients. We propose to develop an international multidisciplinary platform for the exchange of expertise that includes clinical, patient, and research perspectives. Patient perspectives would derive from peer education and the assessment of patient-reported outcomes. To establish a foundation for such a platform, future research should review and combine current VCA protocols, to develop the ethical framework for a standardized psychosocial evaluation and follow-up of VCA candidates and recipients. This review presents a comprehensive overview of recent results in the field of VCA, developments in structural aspects of VCA, and provides viewpoints driven from clinical experience.

Normative account of Islamic bioethics in end-of-life care

ABSTRACT This article addresses the bioethical challenges raised by end-of-life care (EoLC) from the perspective of Islamic normativity. Rejecting positivist positions, it argues for the use of a flexible approach midway between a deontological conception of human life as having a sacred value that cannot be bargained over, as represented by the teachings of Abū Ḥāmid al-Ghazālī's, and one that introduces considerations of pain (alam) and pleasure (ladhdah) into ethical evaluations, as expounded by the jurist Fakhr al-Dīn al-Rāzī. Under this approach, described as “Islamic evaluator relativity,” moral agents formulate a normative position tailored to their beliefs and the circumstances of the case, in which the right course of action is expressed as a value judgement (amr ijtihādi) and the evaluator (mujtahid) is rewarded regardless of the choices they make. Keywords: Islamic bioethics, End-of-life-care, bioethics, normative ethics.

The One Health vision requires veterinarians and physicians to collaborate to prevent bioethical challenges created by restricted access to ketamine in low- and middle-income countries.

The One Health approach asserts that the health of animals and people is closely connected. Under this approach, the CDC and AVMA work globally to attain optimal health outcomes for both animals and humans. One facet of optimal health involves access to safe and effective anesthetics and analgesics. The anesthetic and analgesic drug ketamine possesses unique properties that make it particularly important for both veterinary and human patients in low- and middle-income countries (LMICs). These properties include its portability and stability, low cost, ease of administration, and wide therapeutic margin. China advocates regularly to the United Nations for global scheduling of ketamine as a controlled substance. However, this would disproportionately restrict access to ketamine in LMICs, imposing bioethical challenges related to animal patients, human patients, and communities. In alignment with the One Health vision, opposing global scheduling of ketamine in LMICs creates a unique opportunity for collaboration between veterinarians and physicians in LMICs and high-income countries to prevent these bioethical challenges.

Running Toward Disasters: One Bioethicist's Experience in Translational Ethics.

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 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.

Errors in Converting Principles to Protocols: Where the Bioethics of U.S. Covid-19 Vaccine Allocation Went Wrong.

For much of 2021, allocating the scarce supply of Covid-19 vaccines was the world's most pressing bioethical challenge, and similar challenges may recur for novel therapies and future vaccines. In the United States, the Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices (ACIP) identified three fundamental ethical principles to guide the process: maximize benefits, promote justice, and mitigate health inequities. We argue that critical components of the recommended protocol were internally inconsistent with these principles. Specifically, the ACIP violated its principles by recommending overly broad health care worker priority in phase 1a, using being at least seventy-five years of age as the only criterion to identify individuals at high risk of death from Covid-19 during phase 1b, failing to recommend place-based vaccine distribution, and implicitly endorsing first-come, first-served allocation. More rigorous empirical work and the development of a complete ethical framework that recognizes trade-offs between principles may have prevented these mistakes and saved lives.

The Code Breaker: Jennifer Doudna, Gene Editing, and the Future of the Human Race

The Code Breaker: Jennifer Doudna, Gene Editing, and the Future of the Human Race

The renaissance of magical thinking, a challenge for bioethics

The renaissance of magical thinking, a challenge for bioethics

Bioethical challenges related to the use of artificial intelligence in hospitals

Resumen Este artículo explora las ventajas y los posibles desafíos bioéticos que plantea el uso de la inteligencia artificial en los hospitales. Con base en la identificación de los desafíos en el desarrollo de sistemas dotados de inteligencia artificial (etapa prehospitalaria) y en la implementación y capacitación de los equipos de salud (etapa hospitalaria), se analiza el papel del enfoque bioético en el enfrentamiento de esta situación, especialmente de los comités de bioética hospitalaria. Por lo tanto, mediante la identificación de los desafíos individuales –relativos a la autonomía, al consentimiento y a la privacidad de los pacientes– y colectivos –cómo debe actuar la sociedad en general ante las nuevas tecnologías–, se observa el papel del Estado en la protección de la privacidad del paciente en el contexto del uso de la inteligencia artificial. En conclusión, teniendo en cuenta la vulnerabilidad humana ante la tecnología, se entiende que la regulación es un instrumento que, junto con los principios bioéticos, trata de minimizar los desafíos del uso de la inteligencia artificial en los hospitales.