International Bioethics Research Articles

STRATEGIC DIRECTIONS OF STRENGTHENING THE ROLE OF SOCIAL RESPONSIBILITY IN IMPROVING PUBLIC HEALTH MANAGEMENT

The paper aims to determine the strategic directions for developing social responsibility within the healthcare sector. The report of the UNESCO International Bioethics Committee on Social Responsibility and Health updates the concept of social responsibility in the context of providing medical care, which forms a new paradigm in the management of health care facilities. In the process of research, both general scientific and special methods were used: analysis of the source base; comparative method for characterizing the subject of research; analysis and synthesis to reveal the features of social responsibility in health care; logical generalization of results (formulation of conclusions). The relations of subjects in health care with respect to compliance with the relevant norms of activity are investigated. The goal is to guarantee patient safety, coordinate stakeholder interests, and manage relationships among various stakeholders. These relationships are represented by an algorithm of actions that healthcare institutions can follow to address the primary conflicts involving interested parties. The corporate social responsibility (CSR) of these institutions is also examined separately. The strategic directions for developing a CSR system are defined as increasing transparency in decision-making, maintaining the institution's reputation, transitioning to a monitoring system, among others. In general, CSR is viewed as a special form of social capital. Additionally, the paper substantiates the importance of interaction with local authorities, providing relevant recommendations for strengthening the social responsibility of healthcare institutions. Based on the obtained results, further research should be aimed at determining the strategic directions of the development of corporate social responsibility.

Moral equality and reprogenetic autonomy in the genomic era.

In this paper, I question the argument from human dignity found in the Universal Declaration on the Human Genome and Human Rights (UDHGHR) and in the recent views of the International Bioethics Committee (IBC). I focus on what this argument says about the permissibility of two broad categories of reprogenetic choices that may be available to prospective parents in the genomic era. The argument from human dignity holds that non-medical genetic selection and somatic enhancements ought to be prohibited because they violate the principle of human dignity. I argue that human dignity need not be violated by the enterprise of human genetic selection/somatic enhancement if reasonable social safeguards are established. In particular, I argue that respecting the reprogenetic choices of the decision-maker is paramount within the boundaries of (i) prohibiting the infliction of a shortened lifespan or pain upon the child; (ii) prohibiting the actualization of demeaning beliefs or intentions such as viewing certain groups as inferior; (iii) prohibiting the choice resulting from an expression of unwillingness to love and care for the child; and, with respect to somatic gene enhancements in particular, (iv) the potentially unjustified effects of the enhancement on others, if any, are reasonably addressable (and addressed) via social modifications so as to ensure the enhancement no longer risks adversely affecting them. With these limits, reprogenetic autonomy cannot be said to undermine the dignity of humans by creating unjustified harms or expressing demeaning ideas.

Perceptions of policymakers and ethicists on ethical considerations in the conduct of research during disease outbreaks in Nigeria

Background There is a dearth of literature on the perspectives of stakeholders from countries in Africa on the institution of a research culture as part of a holistic system of pandemic preparedness and response. This study aimed to explore the perspectives of policymakers, representatives from Research Ethics Committees (RECs), and international bioethics experts on the ethics of conducting research during infectious disease outbreaks in Nigeria. Methods We conducted structured interviews with six policymakers actively engaged in disease outbreak response. The interview themes included systems and structures for research, local researcher competency, regulatory oversight, study types, ethical review approaches, and integrating research into outbreak response. We further engaged 12 participants including REC members from Nigeria and Liberia, international bioethics experts, and study co-investigators in a structured discussion to appraise and expand on themes identified during the interviews at a 2-day meeting in December 2018. We also held two virtual consultations afterwards. The findings from these processes were synthesized to develop a comprehensive report. Results Participants stressed the significance of conducting research during disease outbreaks to understand causal factors, evaluate public health measures, and inform future prevention and treatment strategies, and identified the need for clear ethical guidelines for RECs during outbreaks. Participants proposed a sliding scale for prioritizing categorized studies, emphasizing immediate solutions over future-focused research. Discussants proposed a "systems approach" to ethics review, emphasizing interdependence, governance structures, communication infrastructure, effective communication with policymakers, and a funding structure. Conclusion Conducting ethical research during disease outbreaks requires a comprehensive, context-dependent approach, involving stakeholders, and ensuring robust ethical oversight through proficient RECs. The proposed "System Approach" offers a model for sustainable and effective ethics review during outbreaks, fostering locally relevant and socially valuable research while prioritizing the well-being of research participants and communities.

Bioethics-CSR Divide

Bioethics-CSR Divide

A Feminist Bioethics Conference in Qatar? Critical Viewpoints and an Impulse for Further Discussion

In October 2022, the International Association of Bioethics announced that the 17th World Congress of Bioethics (WCB) 2024 would be held in Doha, Qatar. The International Network on Feminist Approaches to Bioethics (FAB) traditionally holds its World Congress jointly with the WCB. As part of the ongoing debate about the ethics of bioethics conferencing, the FAB provided a detailed statement discussing concerns about choosing Qatar as the site for a feminist bioethics conference. In order to explore possible approaches towards the FABs decision, the German Feminist Perspectives in Medical Ethics and Bioethics working group (FME) dedicated one of its meetings to the topic. In this commentary, we present two aspects that we consider particularly important for this current debate: (1) the participation of LGBTQIA+ people in the conference and (2) the possibility of racist and anti-Muslim bias in the evaluation of Qatar as the site for the WCB 2024. As members of the FME, we aim to contribute to an exchange of various perspectives within the international feminist bioethics community.

Three to one – an ethicolegal outline of mitochondrial donation in the South African context

Mitochondrial donation or mitochondrial transfer enables a woman with mitochondrial disease to have a genetically related child without transmitting the disease to the child. The techniques used for mitochondrial donation or transfer which are maternal spindle transfer or pro-nuclei transfer, require three gametes to ultimately produce a healthy embryo. Both these techniques result in the child inheriting nuclear DNA from the intending parents and mitochondrial DNA from the female donor. Following the legalisation of mitochondrial donation in the UK, after a rigorous process of scientific and ethical review, and the birth of another baby using the technique, coupled with the fact that there is no cure for mitochondrial disease, suggests that it is prudent for us to consider this reproductive intervention and its application in the South African setting. In addition, the 2019 UNESCO Report of the International Bioethics Committee (IBC) on assisted reproductive technologies (ART) and parenthood, encourages debate on changes in models of parenthood influenced by ART including the emergence of new models of families and forms of parenthood that extend beyond the classical rule of mater semper certa est (the mother is always known). ART, in particular mitochondrial donation, challenges this rule. The aim of this paper is to provide an outline of the legal and ethical positions of mitochondrial donation and resume the discussion with specific focus on the South African context.

The human genome as the common heritage of humanity.

While debate on the international regulation of human genomic research remains unsettled, the Universal Declaration on the Human Genome and Human Rights, 1997 qualifies the human genome as "heritage of humankind" in a symbolic sense. Using document analysis this article assesses whether, how and to what extent the common heritage framework is relevant in regulation of human genomic research. The article traces the history of the Human Genome Project to reveal the international community's race against privatization of the human genome and its resulting qualification as the common heritage of humanity. Further, it reviews the archival records of UNESCO's International Bioethics Committee to discover the rationale for qualifying the human genome as common heritage of humankind. The article finds that the common heritage of mankind framework remains relevant to the application of the human genome at the collective level. However, the framework is at odds with the individual dimension of the human genome based on individual personality rights. The article thus argues that the right to benefit from scientific progress and its applications offers an alternative international regulatory framework for human genomic research.

COVID-19: Falling Apart and Bouncing Back. A Collective Autoethnography Focused on Bioethics Education

The COVID-19 pandemic disrupted academic life worldwide for students as well as educators. The purpose of this study is to shed light on the collective adversity experienced by international medical students and bioethics educators caused by the COVID-19 pandemic in relation to both personal and academic life. The authors wrote their subjective memoirs and then analyzed them using a collective autoethnography method in order to find the similarities and differences between their experiences. The results reveal some consistent patterns in experience that are captured in two metaphors: Falling apart and Bouncing back. “Falling apart” involves the breakdown of daily lives during the initial stages of the pandemic, shown through subjective quotes contextualized through the authors’ commentary. The consensus is that returning home and the transition to remote education were the two main reasons for the breakdown. “Bouncing back” encompasses the authors’ recovery after the initial breakdown, achieved by acquiring new information about the virus, discovering how to continue their hobbies at home, such as working out or dancing, and learning to adjust exam expectations. At the educational level, the bioethics course, which guided students through the ethical dilemmas of the pandemic, played an important role in the recovery/bouncing back process. For that reason, we report on how it was to learn about and teach this subject during the pandemic, and how bioethics knowledge was applied for better understanding and coping with some of the moral dilemmas related to the pandemic. The study testifies to the importance of bioethics education during a pandemic and explains how this can contribute to shaping the moral resilience of future medical practitioners.

克服跨文化生命倫理研究中常見的預設錯誤

LANGUAGE NOTE | Document text in English ; abstract also in Chinese. The cultural differences between East and West, as well as the differences in attitudes on bioethical issues, are hot topics in the international bioethics community. Scandals in biomedical research in recent years have further increased the prominence and importance of these issues. For example, high-profile cases involving head transplant experimentation and gene-edited babies have provoked international outrage, criticism, and condemnation. Among the responses, there have been reflections on the issue of “why China?” Some researchers blame cultural differences, while others argue that there is a lack of rigorous research ethics oversight in the country. In “The Real Problem With Human Head Transplantation,” it is argued that China “is a country that has a history of taking positions on bioethical issues that diverge from most commonly accepted conceptions of medical and research ethics.” (Abstract taken from first paragraph of document) 當下一系列的生物醫學醜聞以及人們對其多元的反應，突顯了更深入的跨文化生命倫理研究的重要性，以加深多元文化和宗教的理解，促進長期共存和繁榮。作為對Tham文章的拓展，本文駁斥了跨文化生命倫理比較研究中將中國文化和西方文化的簡單二元對立傳統，提出應警惕兩種錯誤傾向：沙文主義和種族中心主義傾向以及不可通約傾向。

The challenges of global bioethics

ABSTRACT The Covid-19 pandemic is associated with an increase in ethics publications and an upsurge of interest in global bioethics. This commentary argues that global bioethics is broader than international bioethics, as defined by Macklin, because the nature of moral problems is determined by processes and practices of globalization, and because a broader theoretical perspective is required. Such perspective acknowledges the connectedness and relationality of human beings, as assumed in the care-based feminist bioethics defended by Tong. The commentary finally claims that a rights-based approach is not opposed to but reinforces a care-based global bioethics.

Theorising and Critiquing ‘Best Interests’: A Systematic Review

"The ‘best interests’ standard is a key part of international law and bioethics, governing the medical treatment of children and adults who lack decision-making capacity. While the concept is used in various circumstances, ‘best interests’ has a long association with medical decision-making, appearing in English language medical journals from at least the early-19th century. Despite its history, the concept of ‘best interests’ has been fiercely criticised within bioethics and law. Critics argue that ‘best interests’ is vague and lacks specificity, and because of this, is an unchallengeable repository of medical power, and an affront to patient autonomy or parental rights. These critiques have fuelled recent calls to replace or radically reform the ‘best interests’ standard from international bodies (the Committee on the Rights of Persons with Disabilities), and national campaign groups (the Charlie Gard Foundation in the United Kingdom). This paper, undertaken as part the BABEL Wellcome Trust Collaborative Award, presents a systematic review of fifty-three theoretically rich analyses of best interests from the 1970s to the present. The discussions consider best interests primarily in clinical situations, such as withdrawal of treatment, dementia, organ donation and circumcision. They reveal a range of theories that underlie best interests including objectivism, paternalism, patient rights, pragmatism and utilitarianism. We discuss what this multiplicity of theoretical bases can reveal about the coherence of current critiques as well as the fundamental structure, and prospects of survival, of the ‘best interests’ standard. "

The Comparative Effectiveness of Synchronous and Asynchronous Online Bioethics Lecture Delivery on Student Learning in Discussion Board Posts

"Due to the COVID-19 pandemic, many courses that were once in person are now online. In our new “physically distanced” world, bioethics faculty has had to adapt quickly. To bridge the gap created by eliminating face-to-face interaction for two cohorts of international bioethics students, we combined them and created five four-week online bioethics mini-courses: “Justice and Pandemic Diseases,” “Reproduction,” “Pediatrics,” “Organ Transplantation,” and “Death and Dying.” Each mini-course involved required readings, weekly lectures, discussion board participation, and a final paper. Our study evaluates the comparative effectiveness of synchronous and asynchronous lecture delivery on student learning as evidenced in online discussion board posts in the mini-courses. Students from both cohorts received the same educational materials but were divided into two groups for alternating synchronous and asynchronous Zoom lectures. We developed a standardized rubric, and raters have been using it to score each student’s initial posts. We hypothesized that, for the same discussion board question, students’ scores on posts following synchronous lectures will on average be higher than those following asynchronous lectures. We will finalize our data analysis at the conclusion of the final mini-course in late March and learn if the data support our hypothesis. There are many challenges in determining the comparative effectiveness of synchronous and asynchronous teaching on overall student learning. Our study addresses a modest yet worthwhile question, whether and to what degree these different lecture modalities impact student learning evidenced in discussion board posts. Our findings will contribute to bioethics pedagogical research during these challenging times. "

Етичний компас медичних рішень під час пандемії COVID-19

The article actualizes and structures significant problems of the medical sphere that arise in the context of the COVID-19 pandemic, in terms of the relations vectors: global world – state – person, state – clinic – society, clinic – doctor (medical staff), clinic – patient, doctor (medical staff) – the patient. The authors presented the evolutionary context of the norming process of medical resources and emphasized the hierarchical scheme of the regulation process of scarce resources norming in the health care system under the pandemic crisis conditions. The paper substantiates approaches to making medical decisions on “sorting” and applying a number of its forms depending on various regional, national, religious, and local models of the ethical values system formation. Emphasis is placed on American and European models of bioethics. The authors consider the utilitarian approach to preparing medical solutions of “clinical sorting” to level ethical catastrophes in a pandemic based on Catholic ethics. The issues of regulated norming of scarce medical resources and the “clinical triage” of patients during the COVID-19 pandemic in Ukraine have been investigated. The main bioethical dilemma of the COVID-19 pandemic is outlined. The authors actualize criteria and models of ethical medical solutions for equitable allocation of scarce medical resources in the context of the COVID-19 pandemic. These criteria and models are defined in the Ethical Guidelines for Responding to COVID-19 of the Bioethics Committee at the Council of Europe, the US Department of Health and Human Services; in normative documents in the field of ethics of medical decisions during the COVID-19 pandemic of the National Medical Associations, chambers, centres of bioethics of Italy, Hungary, USA, Great Britain; in the guidelines of national, religious and local institutions for the preparation of medical decisions for the levelling ethical catastrophes during the pandemic and the studies of international bioethics experts. The paper identified the need to formalize the fair distribution of scarce resources during the COVID-19 pandemic in Ukraine. The authors suggested recommendations for the implementation of ethical values and priorities for their application in critical conditions of shortage of medical resources and personnel in the COVID-19 pandemic in the health care system of Ukraine.

From scientific exploitation to individual memorialization: Evolving attitudes towards research on Nazi victims' bodies.

During the Third Reich, state‐sponsored violence was linked to scientific research on many levels. Prisoners were used as involuntary subjects for medical experiments, and body parts from victims were used in anatomy and neuropathology on a massive scale. In many cases, such specimens remained in scientific collections and were used until long after the war. International bioethics, for a long time, had little to say on the issue. Since the late 1980s, with a renewed interest in the Holocaust and other Nazi crimes, a consensus has increasingly taken hold that research on human tissues and body parts from the Nazi era is inadmissible, and that such specimens should be removed from scientific collections and buried. The question of what to do with scientific data obtained from these sources has not received adequate attention, however, and remains unsolved. This paper traces the history of debates about the ethical implications of using human tissue or body parts from the Nazi period for scientific purposes, primarily in the fields of anatomy and neuropathology. It also examines how this issue, from after the war until today, influenced the establishment of legal and bioethical norms on the use of human remains from morally tainted sources, with a particular emphasis on Germany and Austria. It is argued that the use of such specimens and of data derived from them is unethical not only because of potential harms to posthumous rights of the victims, but also because such use constitutes a moral harm to society at large.

Encounter with a legend: Dr James F Drane.

Dr James F Drane is a living legend in the field of Bioethics. In 2002, he was named one of the Founders of the Discipline of Bioethics at the International Bioethics Conference in Brasilia, Brazil. It was a privilege to meet Dr Drane at Edinboro University Pennsylvania and uncover his journey as a pioneer and leader in this field.

Rights, Gifts, Repair

Rights, Gifts, Repair

Human rights in the postgenomic era: Challenges and opportunities arising with epigenetics

Over the past twenty-five years, international organizations have adopted human rights declarations in an attempt to address emerging ethical, legal and social concerns associated with genetic research and technologies. While these declarations point to important challenges and potential issues in genetics, the focus on genetics has been criticized for promoting the idea that there is something unique about our genes, and that therefore, they deserve special protections in our laws. It is also argued that this ‘genetic exceptionalism’ perspective has contributed to a reinvigoration of genetic essentialism and determinism. In this article, we add to this criticism by pointing out gaps and flaws in current gene-focused human rights declarations in light of recent developments in the field of epigenetics. First, we show that these documents do not provide guidance for a responsible governance of epigenetic data (e.g., privacy protection) and an ethical use of individual epigenetic information (e.g., nondiscrimination). This is particularly concerning given the interest recently demonstrated by insurance companies, forensic scientists and immigration agencies in using epigenetic clock technologies. Second, we argue that findings in epigenetics could contribute to the promotion of second- and third- generation human rights, i.e., respectively, economic, social and cultural rights, and solidarity rights. We conclude by calling for international bioethics and human rights organizations to pay greater attention to epigenetics and other postgenomic sciences in the coming years.

Bioethics, Human Rights and COVID-19

In this paper present, from a bioethical perspective, a reflection on how to reconcile efforts to combat the COVID-19 pandemic with the safeguard of human rights. To do this, I develop three points. First, the regulatory framework that justifies the restriction or suspension of rights in the face of serious threats to public health. Second, the declarations of the international bioethics committees on the way in which human rights should be protected during public health crisis. And third, a review of the main rights threatened both by the public health crisis and by the means adopted to combat it. Before going into each of these points, I offer a preliminary note to clarify certain legal concepts and underline the need to overcome disjunctive approaches in considering human rights.

Reproductive Technologies and the Global Bioethics Debate: A Philosophical Analysis of the Report on ART and Parenthood of the International Bioethics Committee of Unesco

Over the last few decades an increasingly pressing social demand for access to assisted reproductive technologies (ART) has emerged. Alongside the use of reproductive technologies, relevant bioethical and biolegal issues arise, such as the claim of a “right” to have a child, the so-called “reproductive rights”, of the prospective parents and the rights of children. This paper explores these and further challenges, both old and new, calling for a transformation of parenthood and filiation, from the perspective of the different theories of the contemporary pluralistic debate, with a descriptive and critical analysis of the recent Report on ART of the Unesco International Bioethics Committee, the first global document on these topics.

Are we witnessing the swan song of neoliberalism?

Dr José Ramón Acosta-Sariego is full professor of basic and preclinical scienc-es at the Medical University of Havana's Victoria de Girón Institute, where he also chairs the Scientifi c Research Ethics Committee. He serves as vice-chair of the Board of Directors of UNESCO's Latin American and Caribbean Bioethics Net-work (REDBioética) and in 2020, UNES-CO's Director-General appointed him to its 36-member International Bioethics Committee. Dr Acosta-Sariego has been academic coordinator for the bioethics master's degree program at the Univer-sity of Havana since its inception in 2006, is president of the Neuroethics Chapter of the Cuban Neurosciences Society and is a member of the Cuban National Bioeth-ics Committee.