Global health challenges: the need for an expanded discourse on bioethics.
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Biomedical subjects
Publications and source records attributed to Peter A Singer.
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BACKGROUND: There are numerous ethical challenges that can impact patients and families in the health care setting. This paper reports on the results of a study conducted with a panel of clinical bioethicists in Toronto, Ontario, Canada, the purpose of which was to identify the top ethical challenges facing patients and their families in health care. A modified Delphi study was conducted with twelve clinical bioethicist members of the Clinical Ethics Group of the University of Toronto Joint Centre for Bioethics. The panel was asked the question, what do you think are the top ten ethical challenges that Canadians may face in health care? The panel was asked to rank the top ten ethical challenges throughout the Delphi process and consensus was reached after three rounds. DISCUSSION: The top challenge ranked by the group was disagreement between patients/families and health care professionals about treatment decisions. The second highest ranked challenge was waiting lists. The third ranked challenge was access to needed resources for the aged, chronically ill, and mentally ill. SUMMARY: Although many of the challenges listed by the panel have received significant public attention, there has been very little attention paid to the top ranked challenge. We propose several steps that can be taken to help address this key challenge.
Priority setting tends to take place in health care settings that are hierarchical and politically complex. Fair processes, as defined for example by Daniels' and Sabin's accountability for reasonableness framework, have been identified as essential for securing socially acceptable priority setting decisions. However, power differences in the decision-making context can pose a serious impediment to fair priority setting in health care organizations. Comparatively little attention has been paid to examining the institutional conditions within which priority setting decisions are made. We review a case study of priority setting in hospital operational planning in Toronto, which had been designed by executive leaders to be broadly inclusive of senior and middle-level clinical and administrative leaders. We report three power differences that arose as limiting factors on the inclusiveness of the priority setting process. We argue that these findings have significant theoretical implications for the accountability for reasonableness framework and propose a fifth condition, the "empowerment condition", which states that there should be efforts to minimise power differences in the decision-making context and to optimise effective opportunities for participation in priority setting.
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BACKGROUND: Africa in the twenty-first century is faced with a heavy burden of disease, combined with ill-equipped medical systems and underdeveloped technological capacity. A major challenge for the international community is to bring scientific and technological advances like genomics to bear on the health priorities of poorer countries. The New Partnership for Africa's Development has identified science and technology as a key platform for Africa's renewal. Recognizing the timeliness of this issue, the African Centre for Technology Studies and the University of Toronto Joint Centre for Bioethics co-organized a course on Genomics and Public Health Policy in Nairobi, Kenya, the first of a series of similar courses to take place in the developing world. This article presents the findings and recommendations that emerged from this process, recommendations which suggest that a regional approach to developing sound science and technology policies is the key to harnessing genome-related biotechnology to improve health and contribute to human development in Africa. METHODS: The objectives of the course were to familiarize participants with the current status and implications of genomics for health in Africa; to provide frameworks for analyzing and debating the policy and ethical questions; and to begin developing a network across different sectors by sharing perspectives and building relationships. To achieve these goals the course brought together a diverse group of stakeholders from academic research centres, the media, non-governmental, voluntary and legal organizations to stimulate multi-sectoral debate around issues of policy. Topics included scientific advances in genomics innovation systems and business models, international regulatory frameworks, as well as ethical and legal issues. RESULTS: Seven main recommendations emerged: establish a network for sustained dialogue among participants; identify champions among politicians; use the New Plan for African Development (NEPAD) as entry point onto political agenda; commission an African capacity survey in genomics-related R&D to determine areas of strength; undertake a detailed study of R&D models with demonstrated success in the developing world, i.e. China, India, Cuba, Brazil; establish seven regional research centres of excellence; and, create sustainable financing mechanisms. A concrete outcome of this intensive five-day course was the establishment of the African Genome Policy Forum, a multi-stakeholder forum to foster further discussion on policy. CONCLUSION: With African leaders engaged in the New Partnership for Africa's Development, science and technology is well poised to play a valuable role in Africa's renewal, by contributing to economic development and to improved health. Africa's first course on Genomics and Public Health Policy aspired to contribute to the effort to bring this issue to the forefront of the policy debate, focusing on genomics through the lens of public health. The process that has led to this course has served as a model for three subsequent courses (in India, Venezuela and Oman), and the establishment of similar regional networks on genomics and policy, which could form the basis for inter-regional dialogue in the future.
BACKGROUND: Priority setting, also known as rationing or resource allocation, occurs at all levels of every health care system. Daniels and Sabin have proposed a framework for priority setting in health care institutions called 'accountability for reasonableness', which links priority setting to theories of democratic deliberation. Fairness is a key goal of priority setting. According to 'accountability for reasonableness', health care institutions engaged in priority setting have a claim to fairness if they satisfy four conditions of relevance, publicity, appeals/revision, and enforcement. This is the first study which has surveyed the views of hospital decision makers throughout an entire health system about the fairness of priority setting in their institutions. The purpose of this study is to elicit hospital decision-makers' self-report of the fairness of priority setting in their hospitals using an explicit conceptual framework, 'accountability for reasonableness'. METHODS: 160 Ontario hospital Chief Executive Officers, or their designates, were asked to complete a survey questionnaire concerning priority setting in their publicly funded institutions. Eight-six Ontario hospitals completed this survey, for a response rate of 54%. Six close-ended rating scale questions (e.g. Overall, how fair is priority setting at your hospital?), and 3 open-ended questions (e.g. What do you see as the goal(s) of priority setting in your hospital?) were used. RESULTS: Overall, 60.7% of respondents indicated their hospitals' priority setting was fair. With respect to the 'accountability for reasonableness' conditions, respondents indicated their hospitals performed best for the relevance (75.0%) condition, followed by appeals/revision (56.6%), publicity (56.0%), and enforcement (39.5%). CONCLUSIONS: For the first time hospital Chief Executive Officers within an entire health system were surveyed about the fairness of priority setting practices in their institutions using the conceptual framework 'accountability for reasonableness'. Although many hospital CEOs felt that their priority setting was fair, ample room for improvement was noted, especially for the enforcement condition.
BACKGROUND: While innovations in medicine, science and technology have resulted in improved health and quality of life for many people, the benefits of modern medicine continue to elude millions of people in many parts of the world. To assess the potential of genomics to address health needs in EMR, the World Health Organization's Eastern Mediterranean Regional Office and the University of Toronto Joint Centre for Bioethics jointly organized a Genomics and Public Health Policy Executive Course, held September 20th-23rd, 2003, in Muscat, Oman. The 4-day course was sponsored by WHO-EMRO with additional support from the Canadian Program in Genomics and Global Health. The overall objective of the course was to collectively explore how to best harness genomics to improve health in the region. This article presents the course findings and recommendations for genomics policy in EMR. METHODS: The course brought together senior representatives from academia, biotechnology companies, regulatory bodies, media, voluntary, and legal organizations to engage in discussion. Topics covered included scientific advances in genomics, followed by innovations in business models, public sector perspectives, ethics, legal issues and national innovation systems. RESULTS: A set of recommendations, summarized below, was formulated for the Regional Office, the Member States and for individuals.* Advocacy for genomics and biotechnology for political leadership;* Networking between member states to share information, expertise, training, and regional cooperation in biotechnology; coordination of national surveys for assessment of health biotechnology innovation systems, science capacity, government policies, legislation and regulations, intellectual property policies, private sector activity;* Creation in each member country of an effective National Body on genomics, biotechnology and health to:- formulate national biotechnology strategies- raise biotechnology awareness- encourage teaching and training of biotechnology- devise integration of biotechnology within national health systems. CONCLUSION: The recommendations provide the basis for a road map for EMR to take steps to harness biotechnology for better and more equitable health. As a result of these recommendations, health ministers from the region, at the 50th Regional Committee Meeting held in October 2003, have urged Member States to establish national bodies of biotechnology to formulate a strategic vision for developing biotechnology in the service of the region's health. These efforts promise to raise the profile of genomics in EMR and increase regional cooperation in this exciting new field.
BACKGROUND: Bioethics education has been recommended as a formal component of surgical residency training. The best method for teaching bioethics to residents is unclear. We compared the effectiveness of a standardized patient (SP)-based seminar to a traditional seminar format for teaching bioethics to surgical residents. METHODS: We randomized 31 first- and second-year surgical residents to either a SP-based seminar or a traditional seminar on informed consent. Immediately after the seminars, we evaluated resident performance in patient encounters on informed consent by using an objective structured clinical examination. Their knowledge of informed consent was also evaluated by using a 20-question short-answer written examination immediately after the seminars and then 3 weeks later. RESULTS: Twenty-nine residents completed the study; two withdrew because of an emergency. The SP seminar group had lower SP interview scores on the 22 item checklist compared with the traditional seminar group (57% versus 66%; difference -9%; 95% confidence interval [CI], -17% to -1%, P=.03). The SP seminar group also had lower knowledge scores on the questionnaire immediately after the seminar (60% versus 73%; difference -13%; 95% CI, -21% to -4%, P=.003). The difference in knowledge scores persisted at 3 weeks (41% for the SP group, 59% for the traditional seminar group; difference -18%; 95% CI, -29% to -7%; P=.002). CONCLUSIONS: A traditional seminar was superior to an SP-based seminar for teaching informed consent to surgical residents.
Understanding and harnessing genomic variation will contribute significantly to improving the health of people in developing countries. We need to explore the nexus between pharmacogenetics, genotyping projects in developing countries, and the evolution of the pharmaceutical industry in both the developed and developing worlds. Here, we argue that, for the foreseeable future, we should focus not on boutique 'personalized' medicine, but on carefully defined differences between populations and ethical ways of using emerging genomics knowledge to develop drugs and improve health.
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Priority setting is a challenge for health services organizations across health systems. Because demand for health services exceeds available resources, health services priorities must be set to ensure resources are used appropriately to meet the community's health needs. Various approaches have been developed to assist decision-makers to set priorities in their organizations. The dominant approaches come from evidence-based medicine, economics and ethics.
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OBJECTIVE: To describe and evaluate priority setting in the context of hospital priority setting and more specifically to evaluate the use of an appeals process. DESIGN: Qualitative case study and evaluation using the ethical framework 'accountability for reasonableness'. SETTING: The University Health Network (UHN), a network of three large urban teaching hospitals affiliated with the University of Toronto in Toronto, Canada. This study focused on Clinical Activity Target Setting (CATS), the final component of the strategic planning process. PARTICIPANTS: Sixty-six board members, senior administrators, managers, clinical leaders and other hospital staff who participated in the hospital strategic planning exercise. DATA COLLECTION: Three primary sources of data were used: key documents, interviews with participants and stakeholders and observations of group deliberations. DATA ANALYSIS: Open and axial coding using an explicit conceptual framework 'accountability for reasonableness'. RESULTS: This was the first time an appeal process has been described and evaluated. The appeals process was found to be a fundamental component to overall perceived fairness of the priority setting process. The appeals process also enhanced the involvement of stakeholders and increased overall participant satisfaction. In addition, four areas of 'good practice' and ten recommendations for improvement of the larger priority setting process were identified. CONCLUSIONS: This case study has provided an in-depth analysis of a priority setting process at a hospital, with a particular focus on the appeals process. Also, we compared the lessons learned from this study with those from a previous study at a different hospital.
BACKGROUND: Hospitals and regional health authorities must set priorities in the face of resource constraints. Decision-makers seek practical ways to set priorities fairly in strategic planning, but find limited guidance from the literature. Very little has been reported from the perspective of Board members and senior managers about what criteria, processes and parameters of success they would use to set priorities fairly. DISCUSSION: We facilitated workshops for board members and senior leadership at three health care organizations to assist them in developing a strategy for fair priority setting. Workshop participants identified 8 priority setting criteria, 10 key priority setting process elements, and 6 parameters of success that they would use to set priorities in their organizations. Decision-makers in other organizations can draw lessons from these findings to enhance the fairness of their priority setting decision-making. SUMMARY: Lessons learned in three workshops fill an important gap in the literature about what criteria, processes, and parameters of success Board members and senior managers would use to set priorities fairly.
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The growing health disparities between the developing and the developed world call for urgent action from the scientific community. Science and technology have in the past played a vital role in improving public health. Today, with the tremendous potential of genomics and other advances in the life sciences, the contribution of science to improve public health and reduce global health disparities is more pertinent than ever before. Yet the benefits of modern medicine still have not reached millions of people in developing countries. It is crucial to recognize that science and technology can be used very effectively in partnership with public health practices in developing countries and can enhance their efficacy. The fight to improve global health needs, in addition to effective public health measures, requires rapid and efficient diagnostic tools; new vaccines and drugs, efficient delivery methods and novel approaches to therapeutics; and low-cost restoration of water, soil and other natural resources. In 2002, the University of Toronto published a report on the "Top 10 Biotechnologies for Improving Health in Developing Countries". Here we review these new and emerging biotechnologies and explore how they can be used to support the goals of developing countries in improving health.
BACKGROUND: Prior studies attempting to improve end-of-life care have focused on specific outcomes deemed important to healthcare providers, with disappointing results. Improvement may be best achieved by identifying concerns important to individual patients, communicating the patients' concerns to the treating medical team, and repeating the process frequently until all concerns are addressed. Our objective was to conduct a preliminary evaluation of this innovative patient-centred quality improvement strategy. METHODS: Initial interviews elicited participants' ideas for improvement, which were then fed back to health care providers by the study investigator. A rapid-cycle change model ensured frequent reassessment and continued feedback. The study involved 36 seriously ill, hospitalized patients on teaching general medical inpatient units of a tertiary care hospital. The main outcome measure was participants' ratings of satisfaction within different domains of care on follow-up interviews. RESULTS: The proportion of participants who rated various aspects of their care as "excellent" or "very good" on initial interview was 72% for overall care, 64% for symptom control, 66% for level of support, and 75% for discussions about life sustaining treatments. Patients and families identified many actionable steps for improvement such as; better control of pain and shortness of breath, better access to physicians and medical information, more help with activities of daily living, improving the patient's environment, and shorter waits for nursing care, diagnosis, and treatment. Following feedback to the clinical team, participants reported improvement in overall care (32%), symptom control (44%), and support (40%). Only a minority had further discussions about life sustaining treatments. CONCLUSION: A patient-centred approach using rapid-cycle change was feasible and shows promise for improving the quality of end-of-life care. It should be evaluated on a larger sample in a controlled trial.