International Bioethics Research Articles

家庭作為弱勢人群的首重保障: 儒家倫理與醫療倫理

LANGUAGE NOTE | Document text in Chinese; abstract also in English.晚近國際生命倫理學的個人主義色彩仍然甚濃，本文以如何保護醫療弱勢人群（病人）為例，指出國際生命倫理委員會2009年報告書這方面的弊病。文中一方面解釋了儒家倫理學的“家庭共決” 模式，為何應當作為保護醫療弱勢人群的首重保障，另方面也梳理出其它價值體系的相關觀點，發現某些西方學者也有類似看法，只是未為重視。筆者最後以香港公立醫院對終止維持生命治療及預設醫療指示的道德指引為例，說明儒家的家庭共決模式實際如何運作。Individualism is still very much alive in “international” bioethics. Using two documents from the International Bioethics Committee as examples (Proposed Outline for a Report on Respect for Human Vulnerability and Personal Integrity, 2009; Report of the IBC on the Principle of Respect for Human Vulnerability and Personal Integrity, 2011), and focusing on hospital patients as a vulnerable group, this essay points out the pitfalls of individualistic bioethics. Confucianism advocates family co-determination rather than individual self-determination, and this model of decision making can serve as the first bulwark in protecting vulnerable patients. This model of medical decision making is not unique to Chinese culture, but is actually advocated by a small number of Western scholars. This essay also illustrates how family co-determination in medical decisions works using the example of two recent policies introduced in Hong Kong public hospitals, viz., forgoing life-sustaining treatment for the terminally ill and the use of advance directives.DOWNLOAD HISTORY | This article has been downloaded 342 times in Digital Commons before migrating into this platform.

人類脆弱性與醫療倫理

LANGUAGE NOTE | Document text in Chinese; abstract in English only.In his paper, Professor Lo Ping Cheung complains that bioethics is under the undue influence of liberal individualism. He argues that in prioritizing individual autonomy, the United Nations’ “Universal Declaration on Bioethics and Human Rights” (2005) and the International Bioethics Committee’s “Proposed Outline for a Report on Respect for Human Vulnerability and Personal Integrity” (2009) not only allow but also advocate egoistic behavior. In contrast to Lo’s view, in advocating family co-determinism in healthcare, Confucian bioethics is in a better position to provide primary protection to the vulnerable.To defend the Declaration (2005) I draw on the IBC Report (2011) and argue that in enshrining the principle of respect for human vulnerability and personal integrity as a universal value in bioethics, the Declaration seeks to prompt greater solidity between moral strangers and different stakeholders in healthcare and research and the application of emerging technologies in the biomedical sciences. I also argue that the family may fail to protect “the vulnerable,” as vulnerability is a human condition and it occurs in the context of healthcare as a result of personal disability, in addition to environmental burdens and social injustice.DOWNLOAD HISTORY | This article has been downloaded 87 times in Digital Commons before migrating into this platform.

Women and special vulnerability: Commentary “On the principle of respect for human vulnerability and personal integrity,” UNESCO, International Bioethics Committee report

I the past decade UNESCO has pursued a leadership role in the articulation of general principles for bioethics, as well as an extensive campaign to promulgate these principles globally.1 Since UNESCO’s General Conference adopted the Universal Declaration on Bioethics and Human Rights in 2005, UNESCO’s Bioethics Section has worked with member states to develop a “bioethics infrastructure.” UNESCO also provides an “Ethics Teacher Training Course” to member states and disseminates a “core curriculum,” primarily targeting medical students. The core curriculum orients itself by the Universal Declaration on Bioethics and Human Rights and aims to articulate a set of “bioethical principles” that provide a “common global platform” for bioethics. The Syllabus for the Ethics Education Program reflects UNESCO’s persistent definition of bioethics as focused on “problems raised by advances in science and technology.”2 In concluding units of the Syllabus, “social responsibility and health,” responsibility to future generations, and protection of the environment are presented as special, contemporary problems, not included

Respect for people in situations of vulnerability: A new principle for health-care professionals and health-care organizations

T some extent all of us are vulnerable. Every human—indeed everything living—is capable of being hurt, wounded, or damaged. Some situations make us more vulnerable than others. Some situations of vulnerability bear on others’ moral responsibilities. Article 8 of the UNESCO Universal Declaration on Bioethics and Human Rights (2005) acknowledges the moral importance of taking human vulnerability into account “in applying or advancing scientific knowledge, medical practice, and associated technologies.” The Declaration also states that “Individuals and groups of special vulnerability should be protected and the personal integrity of such individuals should be respected” (2005, Article 8). The meaning and intended application of the Declaration’s Article 8 was the topic of a multiyear reflection by UNESCO’s International Bioethics Committee (IBC), which culminated in June 2011 in the release of the Report of IBC on the Principle of Respect for Human Vulnerability and Personal Integrity. In its Report, the IBC regards human vulnerability as a permanent risk to the physical and mental integrity of the human (2011, Articles 6 and 41). This vulnerability is an inescapable feature of all human lives and is a risk that shapes

Social Responsibility: A New Paradigm of Hospital Governance?

Changes in modern societies originate the perception that ethical behaviour is essential in organization’s practices especially in the way they deal with aspects such as human rights. These issues are usually under the umbrella of the concept of social responsibility. Recently the Report of the International Bioethics Committee of UNESCO on Social Responsibility and Health has addressed this concept of social responsibility in the context of health care delivery suggesting a new paradigm in hospital governance. The objective of this paper is to address the issue of corporate social responsibility in health care, namely in the hospital setting, emphasising the special governance arrangements of such complex organisations and to evaluate if new models of hospital management (entrepreneurism) will need robust mechanisms of corporate governance to fulfil its social responsiveness. The scope of this responsible behaviour requires hospitals to fulfil its social and market objectives, in accordance to the law and general ethical standards. Social responsibility includes aspects like abstention of harm to the environment or the protection of the interests of all the stakeholders enrolled in the deliverance of health care. In conclusion, adequate corporate governance and corporate strategy are the gold standard of social responsibility. In a competitive market hospital governance will be optimised if the organization culture is reframed to meet stakeholders’ demands for unequivocal assurances on ethical behaviour. Health care organizations should abide to this new governance approach that is to create organisation value through performance, conformance and responsibility.

REVIEW OF RESPECTING THE PRINCIPLE OF AUTONOMY IN ISLAMIC JURISPRUDENCE AND LAW

The principle of autonomy is the first principle among four Bioethics principles which for the first time in Nuremberg Declaration and after Nazis felonies in mandatory adaption for researches and dangerous tests, it was concerned as a code and guideline of Ethics in research and treatment and afterwards it was affirmed in supplementary declarations and post declaration and international cultural & Bioethics documents and finally it was opened by two western philosophers of Ethics, Beauchamp & Childress and was presented as the first principle of four principles of Bioethics to be a guidance for researchers and physicians dealing with the patients and human subjects. Since there is a reliable bound between jurisprudence and Ethics in the Islamic System and the Ethics arising from humans reason and reason is one of the sources of jurisprudence and jurisprudence is in control of the humans‘ entire life and his/her individual and social relationships, this ethical principle has a place in jurisprudence, in this article we will make effort to review the corresponding principles to the aforesaid principle in Shia’s jurisprudence.

Women and special vulnerability: Commentary “On the principle of respect for human vulnerability and personal integrity,” UNESCO, International Bioethics Committee report

Women and special vulnerability: Commentary “On the principle of respect for human vulnerability and personal integrity,” UNESCO, International Bioethics Committee report

Support the Manchester Manifesto: a case study of the free sharing of human genome data

Professor Huanming Yang is co-founder and president of BGI Shenzhen (formally the Beijing Institute of Genomics). BGI made China’s contribution to the human genome project. From 1% of the human genome project, it is now a key player in many of the world’s megasequencing projects. Professor Yang also has a strong interest in bioethics and society. He is a former member of UNESCO’s international bioethics committee and has recently been appointed to President Obama’s international research panel of the presidential commission for the study of bioethical issues.

Health care and global justice

AbstractAfter outlining his experience in the world of bioethics, the author draws on his role in the UNESCO International Bioethics Committee to explain the new Universal Declaration of Bioethics, adopted by UNESCO in 2005. He describes it as the first global attempt to reconcile the differing sources of bioethical principles: health-care practice and experience and universal human rights. Whilst collecting, and accepting, some criticism of the text of the Declaration, the author sees its chief values as lying in the wider ethical issues that it reflected of concern to the community, the world and biosphere as well as in the adjustment of health-care approaches for consistency with the growing impact of universal human rights law. Whilst acknowledging the differing social experiences of people in different regions of the world, he invokes Amartya Sen to cast doubt on the notion of specific ‘Asian values’, whether in bioethics or human rights.

The current status of decision-making procedures and quality assurance in Europe: an overview

The 2005 Report on Social Responsibility and Health of the UNESCO International Bioethics Committee (Ibc) proposes a new approach to implementing the right to healthcare and suggests a number of Courses of Action to be followed in various fields. Based on the latest available data, we intend to present an overview of the current state of European health systems in two of those fields-decision-making procedures and quality assurance in health care-and to attempt a comparison of the situation with the Report's provisions, in order to pave the way for the identification of what still has to be done to bridge international recommendations and the reality of policy and practice in Europe's health care.

The importance of ‘social responsibility’ in the promotion of health

The publication of the Report of the International Bioethics Committee of Unesco on Social responsibility and health provides an opportunity to reshape the conceptual framework of the right to health care and its practical implications. The traditional distinctions between negative and positive, civil-political and economic-social, legal and moral rights are to be questioned and probably overcome if the goal is to pursue 'the highest attainable standard of health' as a fundamental human right, that should as such be guaranteed to every human being. What we are called upon to, is the commitment not to exclude now and forever anyone from having access to the 'excellence' of scientific and medical progress. Therefore, the addressees of this 'responsibility' cannot be just the governments and the states within the limits of their 'jurisdiction'. The challenge is to tackle at the same time the social and global determinants of health.

The role of solidarity in social responsibility for health

The Article focuses on the concept of social solidarity, as it is used in the Report of the International Bioethics Committee On Social Responsibility and Health. It is argued that solidarity plays a major role in supporting the whole framework of social responsibility, as presented by the IBC. Moreover, solidarity is not limited to members of particular groups, but potentially extended to all human beings on the basis of their inherent dignity; this sense of human solidarity is a necessary presupposition for a genuinely universalistic morality of justice and human rights.

Art and Bioethics: Shifts in Understanding Across Genres

This paper describes and discusses overlapping interests and concerns of art and bioethics and suggests that bioethics would benefit from opening to contributions from the arts. There is a description of recent events in bioethics that have included art, and trends in art that relate to bioethics. The paper outlines art exhibits and performances within two major international bioethics congress programs alongside a discussion of the work of leading hybrid and bio artists who experiment with material (including their own bodies) at the ambiguous intersections between art, bio art and bioethics. Their work seeks to engage audiences in challenging ethical precepts and assumptions about life and existence. We consider the response of art and social theorists and compare these with the responses of bioethicists to comparable cases in bioethics. We note divergent views within the arts and within bioethics in relation to some pivotal questions including questions about what limits, if any, can apply in particular cases and on what basis. This approach allows for a transfer of information and perspectives, challenges assumptions in both art and bioethics and opens up a space for future exchange and dialogue along the shifting borders between these genres.

Theorising the ‘human subject’ in biomedical research: International clinical trials and bioethics discourses in contemporary Sri Lanka

The global spread of clinical trials activity is accompanied by a parallel growth in research governance and human subject protection. In this paper we analyse how dominant ideas of the ‘human subject’ in clinical trials are played out in countries that are deemed to be scientifically under-developed. Specifically, we show how rhetorics of individualism, rationality and autonomy implicit in international ethical guidelines governing human subject research are operationalised and localised. We give insights into the ways in which new knowledge forms become embedded in practice. Using the recent upsurge in clinical trials in Sri Lanka as a case study, based on interviews with 23 doctors and researchers carried out during ethnographic fieldwork between 2008-2009, this article explores the tensions that arise for doctors involved with the promotion of bioethics and the attempts to bring local research governance up to international standards. The doctors and researchers intercept, interpret and critique the notions of human subject implicit in new forms of research governance. From their accounts we have identified two concerns. The first is a critique of dominant ideas of the ‘human subject’ that is informed by ideas of patiency rooted in paternalistic notions of the doctor-patient relationship. Second, ‘human subjects’ are seen as gendered, and located within family relationships. Both of these bring into question the research subjects’ ability to give informed consent and compromise the ideal of an autonomous subject.

Feminist bioethics: at the center, on the margins

This volume considers the place of feminist bioethics within the broader international bioethics community. Since its emergence two decades ago, the feminist perspective on bioethics has existed at the periphery of the discipline's mainstream. Concerns over reproduction and women's health issues-along with the concept that prevailing bioethical thought was fundamentally gendered-were largely subsumed by such overarching issues as the protection of research subjects and by theoretical and methodological frameworks derived from Kantian philosophy and practice-oriented principalism. Now feminist bioethics belongs to both the mainstream and the margins. The essays collected here explore the relation of feminist bioethics to mainstream bioethical thought and practice. The first section looks at the current trajectory of feminist bioethics, its contributions to the mainstream, and how different types of feminism can inform and strengthen feminist bioethics. In the second section, contributors address autonomy, universalism, and trust to probe how feminist perspectives have altered bioethical theory. The third section examines such challenging issues as cancer genetics, childbirth, rape, and prenatal selection to demonstrate the effect of feminist bioethics on mainstream methodology. Contributors to the fourth section reflect on the relationship between feminist bioethical thought and the viewpoints of racial, ethnic, and cultural minorities, including people with disabilities. Philosophically grounded, methodologically sound, and theoretically rigorous, this paradigm-challenging collection ponders the most dynamic areas of feminist inquiry into bioethical thought and practice and sketches future directions for this rapidly growing field.

Report of the International Bioethics Committee of UNESCO (IBC) on Consent

Report of the International Bioethics Committee of UNESCO (IBC) on Consent

“Broad” consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose

An important ethical issue regarding biological samples stored in biobanks is unforeseen future sample use, when no or limited subject consent is obtained. Biobanks of biological samples have significant future research potential, but may cause conflicts of interest regarding the consent obtained. Indeed, ethics, deontology, and jurisprudence generally advise that consent must be specific and circumstantiated. However, it is not possible to foresee all of the future circumstances in which the samples might be useful, nor is it possible to re-contact all subjects in order to gain consent for a new use. The main arguments for the use of "broad" consent are presented with a brief discussion of the conditions where it may be legitimate not to obtain consent. Particular attention is given to the expressed positions of national and international bioethics bodies.

La relance du processus conventionnel relatif au clonage humain – Réflexions de lege ferenda

As regards human cloning, should the convention process – which failed at UN level following several years of procrastination – be relaunched? A United Nations University report (September 2007) and, subsequently, certain reflections on behalf of the International Bioethics Committee, point to the fact that an international convention, banning human reproductive cloning, could emerge in the near future. This convention – the content of which calls for pragmatism and humanism – is at the convergence of several choices. Even though the institutional framework of the UNESCO appears more suitable than that of the United Nations Organization, ambiguities remain regarding convention policy that need to be carefully considered: should a treaty only ban reproductive cloning, without considering, in the same treaty, regulations governing therapeutic cloning, or should both reproductive and therapeutic cloning be approached in a single treaty instrument?

Normative Foundations of Technology Transfer and Transnational Benefit Principles in the UNESCO Universal Declaration on Bioethics and Human Rights

The United Nations Scientific, Education, and Cultural Organization Universal Declaration on Bioethics and Human Rights (UDBHR) expresses in its title and substance a controversial linkage of two normative systems: international human rights law and bioethics. The UDBHR has the status of what is known as a "nonbinding" declaration under public international law. The UDBHR's foundation within bioethics (and association, e.g., with virtue-based or principlist bioethical theories) is more problematic. Nonetheless, the UDBHR contains socially important principles of technology transfer and transnational benefit (articles 14, 15, and 21). This paper is one of the first to explore how the disciplines of bioethics and international human rights law may interact in the UDBHR to advance the policy relevance and health impact of such principles. It investigates their normative ancestry in the UDBHR, as well as relevant conceptual differences between bioethics and public international law in this respect, and how these may be relevant to their conceptual evolution and application.

Bioethics and Self-Governance: The Lessons of the Universal Declaration on Bioethics and Human Rights

The following article analyzes the process of conception, elaboration, and adoption of the Universal Declaration of Bioethics and Human Rights, and reflects on the lessons it might hold for public bioethics on the international level. The author was involved in the process at a variety of levels: he provided advice to the IBC on behalf of the President's Council of Bioethics; he served as the U.S. representative to UNESCO's Intergovernmental Bioethics Committee; and led the U.S. Delegation in the multilateral negotiation of Government experts that culminated in the adoption of the declaration in its final form. The author is currently serving a 4-year term as a member of UNESCO's International Bioethics Committee.