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The evolution of caring within bioethics: provision for relationship and context.

Given the complexity of modern health care, there exists an urgent need to discover how best to resolve complex bioethical issues. Traditionally, principle based ethics provided the benchmark for guiding ethical decision-making. More recently, however, it has become apparent that this traditional approach is often inadequate in dealing with current health care dilemmas. The notion of caring was advanced initially as an alternative to, then as a complement to, principle based ethics. In this article, caring is conceptualized as an attitude and is viewed as integral to the advancement of a coherent and integrated moral approach to ethical decision-making. First, a brief historical description of bioethics is presented. Next, an evolutionary account of caring within bioethics is described. Four fundamental problems associated with the use of caring within bioethics are then outlined. Finally, caring as an attitude is delineated and a case study is used to illustrate the proposed conceptualization of caring. The case study demonstrates that a caring attitude provides for relationship and context, which are elements often neglected by traditional approaches.

Adolescent↗

The Harvard case of Xu Xiping: exploitation of the people, scientific advance, or genetic theft?

A unique history and make-up of a population may make it an attractive research target for population geneticists and pharmaco-genomic investors. The promise of pharmaceutical profits and advances in medical knowledge attracted Harvard researchers and the company Millennium Pharmaceuticals to remote areas in Anhui Province, Central China, leading to international diplomatic disagreements about issues such as the ownership of genetic material and informed consent (IC). This article discusses the role of genomics and genetic sampling in China, the way it is related to population policies (the new eugenics), the national importance of genetic materials and the conflicts it led to between the Chinese government and Harvard University. Here many consider the Xu Xiping case as textbook example of ruthless Western exploitation of development countries, illustrating the cold rationality of science in the process of globalisation. Ten perspectives on this case show that this view is simplistic and contributes little to an understanding of bioethical issues important to the population actually donating the samples. Viewing the Xu Xiping case as the nexus of the intertwinement of international, transnational, national, and local interest groups shows how different interest groups make use of different units of analysis. It also clarifies why the same practice of genetic sampling continues under a different regime, and why the discussion about genetic sampling has shifted from a concern with health care of the poor to an issue of international exploitation, terrorism and development.

Biological Specimen Banks↗

A videotape intervention to enhance the informed consent process for medical and psychiatric treatment research.

OBJECTIVE: This study evaluated a brief educational video designed to enhance the informed consent process for people with serious mental and medical illnesses who are considering participating in treatment research. METHOD: Individuals with schizophrenia who were being recruited for ongoing clinical trials, medical patients without self-reported psychiatric comorbidity, and university undergraduates were randomly assigned to view either a highly structured instructional videotape about the consent process in treatment research or a control videotape that presented only general information about bioethical issues in human research. Knowledge about informed consent was measured before and after viewing. RESULTS: Viewing the experimental videotape resulted in larger gains in knowledge about informed consent. Standardized effect sizes were large in all groups. CONCLUSIONS: The videotape was thus an effective teaching tool across diverse populations, ranging from individuals with severe chronic mental illness to university undergraduates.

Adult↗

The Bioethics Online Service--an implementation of a bioethics database and information resource.

Ethical analysis is crucial to decision making in biomedicine and health care, necessitating rapid access to diffusely disseminated sources of information pertinent to bioethics. We developed the Bioethics Online Service to provide this access and to provide a forum for discussion of bioethical issues. The service, originally designed as a local resource, was expanded to allow Internet access and now enjoys widespread extramural use. We have logged over 8,000 users from our campus, around the state, the nation, and 42 other countries. This model has shown promise in utility and ease of access, and is being used as the template for other informatics developments on our campus and beyond.

Bioethics↗

Bioethics, sport and the genetically enhanced athlete.

This paper begins by acknowledging the interest taken by various international organisations in genetic enhancement and sport, including the US President's Council on Bioethics (July, 2002) and the World Anti-Doping Agency (March, 2002). It is noticed how sporting organisations have been particularly concerned to emphasize the 'threat' of genetics to sport, whereas other institutions have recognised the broader bioethical issues arising from this prospect, which do not readily reject the use of genetic technology in sport. Sports are identified as necessarily 'human' and 'moral' practices, the exploration of which can reveal greater insight into the intuitive fears about genetic modification. It is argued that anti-doping testing measures and sanctions unacceptably persecute the athlete. While there are substantial reasons to be concerned about the use of genetic modification in sport, the desire for policy ought not diminish the need for ethical research; nor ought such research embody the similar guise of traditional 'anti' doping strategies. Rather, the approach to genetics in sport must be informed more by broader social policies in bioethics and recognition of the greater goods arising from genetic technology.

Doping in Sports↗

Bioethics and the national security state.

In previous work, I have described the history and ethics of human experiments for national security purposes during he cold war and developed the bioethical issues that will be apparent in the "war on terror". This paper is an attempt to bring these two previous lines of work together under the rubric of the "national security state," a concept familiar to Cold War historians and political scientists. The founding of the national security state was associated with the first articulations of informed consent requirements by national security agencies. My analysis indicates that strengthened consent standards, though conventionally thought to be antithetical crisis, can be seen as an attempt by the postwar national security state to protect itself from critics of expanded governmental power. During the coming years the renewed mission of the national security state in the war on terror should impel students of bioethics to consider its implications for the field.

Bioethics↗

Issues in stem cell plasticity.

Experimental biology and medicine work with stem cells more than twenty years. The method discovered for in vitro culture of human embryonal stem cells acquired at abortions or from "surplus" embryos left from in vitro fertilization, evoked immediately ideas on the possibility to aim development and differentiation of these cells at regeneration of damaged tissues. Recently, several surprising observations proved that even tissue-specific (multipotent) stem cells are capable, under suitable conditions, of producing a whole spectrum of cell types, regardless, whether these tissues are derived from the same germ layer or not. This ability is frequently called stem cell plasticity but other authors also use different names - "non-orthodox differentiation" or "transdifferentiation". In this paper we wish to raise several important questions and problems related to this theme. Let us remind some of them: Is it possible to force cells of one-type tissue to look and act as cells of another tissue? Are these changes natural? Could these transformations be used to treat diseases? What about the bioethic issue? However, the most serious task "still remains to be solved - how to detect, harvest and culture stem cells for therapy of certain diseases".

Animals↗

The ethics of electro-shock therapy.

Last September the Italian National Commission on Bioethics issued an opinion on the use of electro-shock (or electroconvulsive) therapy. It has now been made available in English translation and is reprinted here. The commission had been asked for an opinion by the leader of the Green Party group on Rome City Council. The request specifically asked whether it was now advisable to suspend the practice of this particular therapy. In producing its opinion, the commission's members seem to have consulted widely within Italy but not much outside.

Advisory Committees↗

Ethics and HIV research in Zimbabwe.

A plethora of articles are now being published in both local and international journals on research activities conducted on the human immunodeficiency virus (HIV) in Zimbabwe. Some of the bioethical issues they raise, however, are neither unique to HIV nor unique to developing countries. In this article we discuss several of these issues, including the failure to provide interventions of known efficacy, ethical relevance of study design, informed consent, and exploitation. A challenge raised by much of the research in HIV/AIDS is whether, or under what conditions, it is ethical in research to fail to provide an intervention of known efficacy. The further we diverge from this situation, in which an effective, easy to implement intervention is available, to situations that resemble the controversial international clinical trials to prevent perinatal transmission of HIV the less clear the ethical mandate becomes. In relation to clinical trials the debate has focused on whether the standard of care in the United States--an expensive and complex regimen of Zidovudine--must be provided to all HIV infected pregnant women who join a research study in developing countries. Different scientists and scholars in bioethics have drawn the line differently in terms of what interventions routinely available in the developed world must be provided to research participants in developing countries. At an extreme, no one suggests that the most expensive and complex of Western tertiary care, for example, renal dialysis or coronary bypass, must be provided in research conducted in Zimbabwe. Indeed, public debates about the HIV perinatal transmission trials have not even focused on whether the women in the trials should be provided with HIV combination therapy as they would be in the West or whether they should even have the Zidovudine continued post partum.

Ethics, Medical↗

The argument from transfer.

Utilitarian arguments on bioethical issues regarding human reproduction typically start with the view that it is wrong, other things being equal, not to procreate when this would have resulted in an additional being with a life worth living. The paper takes this view for granted and examines the common utilitarian claim that overpopulation and destitution in the world mean that, in practice, this obligation to procreate, other things being equal, often turns into a (categorical) obligation not to procreate. A version of this argument is defended -- a version called the argument from transfer -- according to which, rather than having additional children and care for them in order to make them happy, many people in the West ought to abstain from procreation and take care of destitute children already existing. The reasoning leading up to this conclusion raises some philosophical questions, seldom discussed in connection with bioethics, which indicate that the argument from transfer, although supporting the claim above, cannot neutralise the obligation to create more happy people as easily as assumed by utilitarians. It is argued that the argument from transfer may place many people facing the choice of procreation in a peculiar moral dilemma.

Child↗

Ethics and editors.

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Bioethical Issues↗

Ethics and editors.

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Bioethical Issues↗

The role of ethics in pediatrics.

Medical ethics has increased in importance in medical education and practice as a consequence of advances in definitive treatment of patients. Most problems in ethics related to medicine have certain common denominators. Medical scientists and practitioners frequently disclaim any ethical absolutes or consider as important only nonmoral consequences rather than ethical principles such as justice, noninjury, truth-telling, etc. Failure to differentiate moral from nonmoral decisions as well as differences in level of moral reasoning also account for substantial differences in analyzing a given clinical problem. Finally, individual moral policy may be rendered ineffective because of institutional policies that result from purely pragmatic considerations.

Attitude of Health Personnel↗

Oregon Health Decisions. An experiment with informed community consent.

Oregon Health Decisions is a citizen-based project intended to develop statewide awareness of severe bioethical dilemmas. The project has set in motion civic means for addressing and resolving problems in Oregon's health provision system associated with personal autonomy, equity of access, prevention of illness, and humane cost containment. The process of civic involvement with consequent results is described together with the implications for future health policy in Oregon and elsewhere.

Advisory Committees↗