New Notes

All citizens will make bioethics decisions as a result of today's biotechnology revolution. The decisions made require citizens to find possible acceptable solutions to dilemmas that have become public issues. In this activity, students practice making decisions in ethical dilemmas after evaluating the influences of their own ethical beliefs and learning five ethical systems (relativism, divine command, utilitarianism, deontology, and virtue). They also learn systematic strategies that are useful for approaching any ethical dilemma. Alternatives and adaptations are provided or suggested to accommodate different maturity levels.     

Letter to my doctor

Considerable attention is now being given to ethical conflicts raised by such issues as the disclosure of diagnosis and prognosis, the role of the family in making medical decisions, and the withholding or withdrawing of treatment of terminally ill patients. Already complicated, these issues take on added complexity in contexts where medical professionals and patients have differing cultural beliefs and practices. Ethical dilemmas that develop in multicultural settings have been largely unaddressed. Through the analysis of a case involving the hospital admission and death of a Chinese woman with metastatic lung cancer, we examine some of these dilemmas and their effect on the patient, family, and physicians. Many issues were raised by this case regarding the relationships among ethnic background, bioethics, and medical care.     

什么是生命伦理学？——从历史发展的视角

生命伦理学是20世纪60年代兴起于美国的一门新兴学科,旨在应对生命科学和生物技术的发展或医疗保健的演变使人类面临的种种伦理难题。生命伦理学的兴起有着特殊的社会历史背景。它在发展过程中出现的一些里程碑式的案例,对生命伦理学的发展产生了深远的影响。从其发展特征上看,生命伦理学和医学伦理学紧密联系,有着更为广泛的研究内容和独特的专业特性。生命伦理学要有效回应现代医学和生命科学的发展给人类带来的伦理难题,既要准确地界定伦理问题,又要以适当的方式将伦理学基础理论应用到具体问题当中。对生命伦理学的基本理论进行概述。     

Rethinking medical ethics: a view from below

In this paper, we argue that lack of access to the fruits of modern medicine and the science that informs it is an important and neglected topic within bioethics and medical ethics. This is especially clear to those working in what are now termed 'resource-poor settings'- to those working, in plain language, among populations living in dire poverty. We draw on our experience with infectious diseases in some of the poorest communities in the world to interrogate the central imperatives of bioethics and medical ethics. AIDS, tuberculosis, and malaria are the three leading infectious killers of adults in the world today. Because each disease is treatable with already available therapies, the lack of access to medical care is widely perceived in heavily disease-burdened areas as constituting an ethical and moral dilemma. In settings in which research on these diseases are conducted but there is little in the way of therapy, there is much talk of first world diagnostics and third world therapeutics. Here we call for the 'resocialising' of ethics. To resocialise medical ethics will involve using the socialising disciplines to contextualise fully ethical dilemmas in settings of poverty and, a related gambit, the systematic participation of the destitute sick. Clinical research across steep gradients also needs to be linked with the interventions that are demanded by the poor and otherwise marginalised. We conclude that medical ethics must grapple more persistently with the growing problem posed by the yawning 'outcome gap' between rich and poor.     

Localized past, globalized future: towards an effective bioethical framework using examples from population genetics and medical tourism

This paper suggests that many of the pressing dilemmas of bioethics are global and structural in nature. Accordingly, global ethical frameworks are required which recognize the ethically significant factors of all global actors. To this end, ethical frameworks must recognize the rights and interests of both individuals and groups (and the interrelation of these). The paper suggests that the current dominant bioethical framework is inadequate to this task as it is over-individualist and therefore unable to give significant weight to the ethical demands of groups (and by extension communal and public goods). It will explore this theme by considering the inadequacy of informed consent (the 'global standard' of bioethics) to address two pressing global bioethical issues: medical tourism and population genetics. Using these examples it will show why consent is inadequate to address all the significant features of these ethical dilemmas. Four key failures will be explored, namely, ? That the rights and interests of those related (and therefore affected) are neglected; ? That consent fails to take account of the context and commitments of individuals which may constitute inducement and coercion; ? That consent alone does not have the ethical weight to negate exploitation or make an unjust action just ('the fallacy of sufficiency'); ? That consent is a single one-off act which is inappropriate for the types of decision being made. It will conclude by suggesting that more appropriate models are emerging, particularly in population genetics, which can supplement consent.     

An undignified bioethics: there is no method in this madness

In a recent article, Alasdair Cochrane argues for the need to have an undignified bioethics. His is not, of course, a call to transform bioethics into an inelegant, pathetic discipline, or one failing to meet appropriate disciplinary standards. His is a call to simply eliminate the concept of human dignity from bioethical discourse. Here I argue that he fails to make his case. I first show that several of the flaws that Cochrane identifies are not flaws of the conceptions of dignity he discusses but rather flaws of his, often problematic, understanding of such conceptions. Second, I argue that Cochrane's case against the concept of human dignity goes too far. I thus show that were one to agree that these are indeed flaws that require that we discard our ethical concepts, then following Cochrane's recommendations would commit us not only to an undignified bioethics, i.e. a bioethics without dignity, but to a bioethics without much ethics at all.     

Bioethics for human geneticists: models for reasoning and methods for teaching.

The ethical issues raised by the Human Genome Project (HGP) and by human genetics in general are not entirely novel. In fact, the ethical issues surrounding genetic research and the provision of genetic services fit into the evolution of bioethics, a field of inquiry which has its roots in concerns of the 1970s, concerns about the dignity and self-determination of individuals and about the development of medical technologies. Although bioethics has been largely occupied with patient-centered concerns, attention is currently shifting toward socially oriented issues, such as the justice of the existing health-care system. Genetic counseling has already incorporated many of the lessons of early bioethics and, as a profession, adheres to a consultand-centered ethic which reflects the values incorporated into the doctrine of informed consent, which is a cornerstone of bioethics. The mandate of the Ethical, Legal, and Social Implications Program of the HGP--to anticipate ethical problems arising from advances in genetics and to educate the public about genetics--reflects not only the nonpaternalistic approach of early bioethics but also bioethics' increasing attention to the ethical import of systemic and institutional factors, as well as an anticipatory and preventive approach to dealing with ethical concerns. Because bioethics has so much to contribute to current consideration of ethical issues in human genetics, it is important to provide training in ethics to those working in the field. Guidelines for using a case-oriented approach are suggested.     

International research ethics: progress, but not perfection

To the uninitiated researcher, bioethics can be a confusing and sometimes bureaucratic process. The recent debates in international research ethics have both increased understanding of contentious issues while extending confusion to the international arena. Here, we attempt to demystify bioethics, or more specifically international research ethics, by defining ethics in the context of morality, reviewing core Western ethical principles, and highlighting challenges in international research ethics.     

What has bioethics to offer the developing countries

My paper consists of three parts. In the first part I try to explain the intellectual basis of bioethics in developing countries. In the second part I describe the bioethical dilemmas facing these countries. In the third part I shall discuss the changes that have to be made in bioethics if it is to take root in these countries, and thereby help them to improve the human existence.     

Biobanking and deceased persons

Early biomedical research focused primarily on the study of specific diseases or sets of diseases within small groups of living research participants. Accordingly, the first ethical frameworks governing biomedical research addressed short-term, limited-scope research involving living research participants. Due to recent interest in longitudinal population studies and biobanking, research is increasingly long term. This shift raises several ethical and legal issues concerning the impact of a participant’s death on research. This paper offers an overview of these issues in the context of longitudinal biobanking genetic research. Our first part outlines the legal and ethical frameworks that govern the effect of the participants’ death on consent. This will be followed by an analysis of the legal and ethical frameworks that govern the secondary use of deceased participants’ data and samples and the return of deceased participants’ individual research results to biological family members. In our second part, we will review the current literature and discuss the above mentioned issues using the bioethics “principlism” theory before concluding.     

FROM INTEGRATIVE BIOETHICS TO PSEUDOSCIENCE

Integrative bioethics is a brand of bioethics conceived and propagated by a group of Croatian philosophers and other scholars. This article discusses and shows that the approach encounters several serious difficulties. In criticizing certain standard views on bioethics and in presenting their own, the advocates of integrative bioethics fall into various conceptual confusions and inconsistencies. Although presented as a project that promises to deal with moral dilemmas created by modern science and technology, integrative bioethics does not contain the slightest normativity or action‐guiding capacity. Portrayed as a scientific and interdisciplinary enterprise, integrative bioethics displays a large number of pseudoscientific features that throw into doubt its overall credibility.     

From Secrets of Life to the Life of Secrets: Tracing Genetic Knowledge as Genealogical Ethics in Biomedical Britain

I argue that the facts of a 'genealogical ethics' are built up over time as local moralities of information disclosure and non-disclosure. In the context of predictive genetic testing technologies, family members must discriminate between genetic information that they think is 'good' to know or make known, and knowledge that they think is 'bad' to tell and share with others. But attempts to deal with the kinship implications of genetic foreknowledge frequently entail unresolved processes of moral decision-making, both within and across the generations. Seen as embodied experiences of moral reckoning, these genealogical knowledge dilemmas also implicate a myriad of interests and divergent claims beyond the life of any one person. This article considers why a specifically anthropological formulation of 'genealogical ethics' challenges the conceptual premiss of individual autonomy underpinning the 'right to know' debates of mainstream Western bioethics.     

Bioethics and activism: A natural fit?

Bioethics is a practically oriented discipline that developed to address pressing ethical issues arising from developments in the life sciences. Given this inherent practical bent, some form of advocacy or activism seems inherent to the nature of bioethics. However, there are potential tensions between being a bioethics activist, and academic ideals. In academic bioethics, scholarship involves reflection, rigour and the embrace of complexity and uncertainty. These values of scholarship seem to be in tension with being an activist, which requires pragmatism, simplicity, certainty and, above all, action. In this paper I explore this apparent dichotomy, using the case example of my own involvement in international efforts to end forced organ harvesting from prisoners of conscience in China. I conclude that these tensions can be managed and that academic bioethics requires a willingness to be activist.     

Teaching global bioethics

We live in a world with enormous disparities in health. The life expectancy in Japan is 80 years; in Malawi, 40 years. The under-five mortality in Norway is 4/1000; in Sierra Leone, 316/1000. The situation is actually worse than these figures suggest because average rates tend to mask inequalities within a country. Several presidents of the IAB have urged bioethicists to attend to global disparities and to broaden the scope of bioethics. For the last six years I have tried to do just that. In this paper, I report and reflect on my attempts to teach bioethics in ways that address global health and justice. I then discuss ways to address key ethical issues in global health: the problem of inequalities; the nature of the duty to assist; the importance of the duty not to harm; the difference between a cosmopolitan and a political view of justice. I also discuss how teaching about global health may help to shift the emphasis in bioethics--from sensational cases to everyday matters, from autonomy and justice, and from access to healthcare to the social determinants of health. At the end of my paper, I reflect on questions that I have not resolved: how to delineate the scope of bioethics, whether my approach over-politicises bioethics, and how to understand the responsibilities of bioethicists.     

Corruption and research

Last year there was a heated debate regarding clinical trials with AZT carried out in developing countries. AIDs vaccine trials also posed various dilemmas and ethical problems. In this paper I will consider the possibility of corruption in bioethics, and international multi-centre research will be taken as an example. International clinical trials will be seen from another perspective. I will try to show that the possibility of systemic corruption should be considered when designing an international multi-centre research trial which may involve countries in very different situations regarding corruption. I will analyze three different approaches to this problem and suggest some strategies regarding their capacity to exclude the possibility of corruption.     

Issues and Challenges in Research on the Ethics of Medical Tourism: Reflections from a Conference

The authors co-organized (Snyder and Crooks) and gave a keynote presentation at (Turner) a conference on ethical issues in medical tourism. Medical tourism involves travel across international borders with the intention of receiving medical care. This care is typically paid for out-of-pocket and is motivated by an interest in cost savings and/or avoiding wait times for care in the patient’s home country. This practice raises numerous ethical concerns, including potentially exacerbating health inequities in destination and source countries and disrupting continuity of care for patients. In this report, we synthesize conference presentations and present three lessons from the conference: 1) Medical tourism research has the potential for cross- or inter-disciplinarity but must bridge the gap between researchers trained in ethical theory and scholars unfamiliar with normative frameworks; 2) Medical tourism research must engage with empirical research from a variety of disciplines; and 3) Ethical analyses of medical tourism must incorporate both individual and population-level perspectives. While these lessons are presented in the context of research on medical tourism, we argue that they are applicable in other areas of research where global practices, such as human subject research and health worker migration, are occurring in the face of limited regulatory oversight.     

The Principle of Caveat Emptor: Confidentiality and Informed Consent as Endemic Ethical Dilemmas in Focus Group Research

Informed consent and confidentiality supposedly minimize harm for research participants in all qualitative research methodologies, inclusive of one-on-one unstructured interviews and focus groups. This is not the case for the latter. Confidentiality and informed consent uniquely manifest themselves as endemic ethical dilemmas for focus group researchers. The principle of caveat emptor (let the buyer beware) may be a more useful tool for those involved in focus group research: that is, let the researcher, the participants and the ethics committee beware that the only ethical assurance that can be given to focus group participants is that there are few ethical assurances. These ethical dilemmas are not sufficiently realized in the literature, and if they are discussed, they are often dealt with within the focus group moderator’s preamble to the group discussion. This paper encourages the mandatory use of a participant information sheet sufficiently detailed to engender the participant’s active consent. Sufficient here means the participant must be made adequately aware of these endemic ethical dilemmas in advance, to allow them to consent to share responsibility for any ensuing harm. The focus group moderator is not their sole protector.     

Don't Blame the ‘Bio’ — Blame the ‘Ethics’: Varieties of (bio) ethics and the challenge of pluralism

We tend to think that the difficulties in bioethics spring from the novel and alarming issues that arise due to discoveries in the new biosciences and biotechnologies. But many of the crucial difficulties in bioethics arise from the assumption we make about ethics. This paper offers a brief overview of bioethics, and relates ethical 'principlism' to 'ethical fundamentalism.' It then reviews some alternative approaches that have emerged during the second phase of bioethics and argues for a neo-Aristotelian approach. Misconceptions about ethical principles and ethical reasoning not only distort our views of the business of bioethics, but they also prevent us from facing up to the formidable problems posed by ethical pluralism in so-called liberal societies.     

Communication of Genetic Information within Families: The Case for Familial Comity

Advances in genetic technologies raise a multitude of ethical issues, some of which give rise to novel dilemmas for medical practice. One of the most controversial problems arising in clinical genetics is that of confidentiality and who may disclose genetic health information. This paper considers the question of when it is appropriate for health professionals to disclose clinically significant genetic information without patient consent. Existing ethical principles offer little guidance in relation to this issue. We build on suggestions that genetic information may be viewed as collective or shared information, and we introduce the concept of ‘familial comity’ as a fresh way to consider the issues.Competing Interests: None declared. Funding: No special funding was secured for this research.     

The intellectual basis of bioethics in Southern European countries

Today the Western world harbors, at least, three very different ethical traditions, each with its own characteristics: the Anglo-Saxon, the Northern (or Central) European, and the Mediterranean. Because modern bioethics made its appearance in the Anglo-American culture, Europeans in general, and Mediterraneans in particular, have attempted not simply to "import" or "translate" bioethics, but rather to "recreate" or "remake" the discipline according to their own cultural and ethical traditions. In my presentation, I would like to explain the peculiarities of Mediterranean bioethics, analyzing the following seven points: First, how they think bioethics should be philosophically founded; Second, the Mediterranean ethics of virtue and the doctor-patient relationship; Third, the relationship between Ethics and Law; Fourth, Health Care Systems and Ethics, Fifth, the problems concerning patient rights; Sixth, ethics by Committees; and finally, some general conclusions.