BackgroundScientists engaged in global health research are increasingly faced with barriers to access and use of human tissues from the developing world communities where much of their research is targeted. In part, the problem can be traced to distrust of researchers from affluent countries, given the history of 'scientific-imperialism' and 'biocolonialism' reflected in past well publicized cases of exploitation of research participants from low to middle income countries.DiscussionTo a considerable extent, the failure to adequately engage host communities, the opacity of (...) informed consent, and the lack of fair benefit-sharing have played a significant role in eroding trust. These ethical considerations are central to biomedical research in low to middle income countries and failure to attend to them can inadvertently contribute to exploitation and erode trust. A 'tissue trust' may be a plausible means for enabling access to human tissues for research in a manner that is responsive to the ethical challenges considered.SummaryPreventing exploitation and restoring trust while simultaneously promoting global health research calls for innovative approaches to human tissues research. A tissue trust can reduce the risk of exploitation and promote host capacity as a key benefit. (shrink)

Medicine and health care generate many bioethical problems and dilemmas that are of great academic, professional and public interest. This comprehensive resource is designed as a succinct yet authoritative text and reference for clinicians, bioethicists, and advanced students seeking a better understanding of ethics problems in the clinical setting. Each chapter illustrates an ethical problem that might be encountered in everyday practice; defines the concepts at issue; examines their implications from the perspectives of ethics, law and policy; and then provides (...) a practical resolution. There are 10 key sections presenting the most vital topics and clinically relevant areas of modern bioethics. International, interdisciplinary authorship and cross-cultural orientation ensure suitability for a worldwide audience. This book will assist all clinicians in making well-reasoned and defensible decisions by developing their awareness of ethical considerations and teaching the analytical skills to deal with them effectively. (shrink)

Human reproductive cloning has become the most palpable example of the globalization of science. Throughout the world, events and conjectures in the media, such as the birth and death in the United Kingdom of the cloned sheep Dolly and projects to clone human beings by Korean scientists, by members of the Canadian-based Raelian cult, and by the Italian physician Antinori in an undisclosed country, have galvanized the political will of individual countries to ban human reproductive cloning.Yet, international attempts to harmonize (...) policies in the area of biomedical ethics and human research, such as the 1997 Council of Europe’s Convention on Human Rights and Biomedicine, and most recently, the United Nations’ efforts to adopt an international convention against human reproductive cloning, have been insufficient to trigger a substantial global policy design process on issues relating to these new technologies. (shrink)

Background Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap (...) by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Discussion Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. Summary This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of – or revisions to – a regionalised health care strategy. (shrink)

The Institute of Medicine's report, the American Medical Association's project, the Open Society Institute's and the initiative sponsored by the Robert Wood Johnson Foundation have focused attention on improving the care of dying patients. These efforts include advance care planning and the use of written advance directives. Although previous studies have provided quantitative descriptions of patient preferences for life-sustaining treatment, including those documented in written ADs, to our knowledge open-ended written preferences have not been studied. Studies of these open-ended preferences (...) could highlight issues with respect to quality end-of-life care. The purpose of this study was to explore the open-ended proxy, health, and personal care preferences of people with HIV as expressed in a written AD form. (shrink)

OBJECTIVE: To describe the issues faced, and how they were addressed, by the University of Toronto Critical Care Medicine Program/Joint Centre for Bioethics Task Force on Appropriate Use of Life-Sustaining Treatment. The clinical problem addressed by the Task Force was dealing with requests by patients or substitute decision makers for life-sustaining treatment that their healthcare providers believe is inappropriate. DESIGN: Case study. SETTING: The University of Toronto Joint Centre for Bioethics/Critical Care Medicine Program Task Force on Appropriate Use of Life-Sustaining (...) Treatment. PARTICIPANTS: The 24-member Task Force included physician and nursing leaders from five critical care units, bioethicists, a legal scholar, a health administration expert, a social worker, and a hospital public relations professional. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Our specific lessons learned include a) a policy focus on process; b) use of a negotiation and mediation model, rather than a hospital ethics committee model, for this process; and c) the policy development process is itself a negotiation, so we recommend equal involvement of interested groups including patients, families, and the public. CONCLUSIONS: This article describes the key issues faced by the Task Force while developing its policy. It will provide a useful starting point for other groups developing policy on appropriate use of life-sustaining treatment. (shrink)

Demands by Patients or their Families for treatment thought to be inappropriate by health care providers constitute an important set of moral problems in clinical practice. A variety of approaches to such cases have been described in the literature, including medical futility, standard of care and negotiation. Medical futility fails because it confounds morally distinct cases: demand for an ineffective treatment and demand for an effective treatment that supports a controversial end (e.g., permanent unconsciousness). Medical futility is not necessary in (...) the first case and is harmful in the second. Ineffective treatment falls outside the standard of care, and thus health care workers have no obligation to provide it. Demands for treatment that supports controversial ends are difficult cases best addressed through open communication, negotiation and the use of conflict-resolution techniques. Institutions should ensure that fair and unambiguous procedures for dealing with such cases are laid out in policy statements. (shrink)

The international context of the last fifty years of modern bioethics have been significant in establishing health-care ethics or bioethics as a common parlance - an ideology of our times, achieving near universal acceptance, with little dissent. Most international health organizations have developed important declarations that have become the credo of their daily practice and long-term commitments. However, in the last decade in particular, bioethicists and other health-care practitioners and scholars have worried about the persistence of health-care inequities and the (...) inadequate realization of bioethics, particularly in low-to-middle income countries. Global bioethics, now well into the new millennium, has entered a regulatory crisis: it needs to confront not just global bioethical commitments around major scientific revolutions such as genomics, but further, a regulatory crisis about the persisting national public law silences and health inequities, especially in low-to-middle income countries. (shrink)

Liver transplantation is the treatment of choice for many forms of liver disease. Unfortunately, the scarcity of cadaveric donor livers limits the availability of this technique. To improve the availability of liver transplantation, surgeons have developed the capability of removing a portion of liver from a live donor and transplanting it into a recipient. A few liver transplants using living donors have been performed worldwide.Our purpose was to analyze the ethics of liver transplants using living donors and to propose guidelines (...) for the procedure before it was introduced in the United States. We used a process of research ethics consultation that involves a collaboration between clinical investigators and clinical ethicists. We concluded that it was ethically appropriate to perform liver transplantation using living donors in a small series of patients on a trial basis, and we published our ethical guidelines in a medical journal before the procedure was introduced. We recommend this prospective, public approach for the introduction of other innovative therapies in medicine and surgery. (shrink)

The international context of the last fifty years of modern bioethics have been significant in establishing health-care ethics or bioethics as a common parlance - an ideology of our times, achieving near universal acceptance, with little dissent. Most international health organizations have developed important declarations that have become the credo of their daily practice and long-term commitments. However, in the last decade in particular, bioethicists and other health-care practitioners and scholars have worried about the persistence of health-care inequities and the (...) inadequate realization of bioethics, particularly in low-to-middle income countries. Global bioethics, now well into the new millennium, has entered a regulatory crisis: it needs to confront not just global bioethical commitments around major scientific revolutions such as genomics, but further, a regulatory crisis about the persisting national public law silences and health inequities, especially in low-to-middle income countries. (shrink)