Bmc Med Ethics
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The global expansion of biobanks has led to a range of bioethical concerns related to consent, privacy, control, ownership, and disclosure. As an opportunity to engage broader audiences on these concerns, bioethicists have welcomed the commercial success of Rebecca Skloot's 2010 bestselling book The Immortal Life of Henrietta Lacks. To assess the impact of the book on discussion within the media and popular culture more generally, we systematically analyzed the ethics-related themes emphasized in reviews and articles about the book, and in interviews and profiles of Skloot. ⋯ The book has been praised as an opportunity to elevate media discussion of bioethics, but such claims should be re-considered. The relatively narrow focus on informed consent in the media discussion generated by Skloot's book may limit the ability of ethicists and advocates to elevate attention to donor control, compensation, patenting, privacy, and other ethical issues. Still, ethicists should view the book and a pending major TV film translation as opportunities to highlight through media outreach, consultation exercises and public forums a broader range of bioethical concerns that would otherwise be under-emphasized in news coverage. Such efforts, however, need to be carefully planned and evaluated.
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Despite the evidence showing the promise of HIV treatment as prevention (TasP) in reducing HIV incidence, a variety of ethical questions surrounding the implementation and "scaling up" of TasP have been articulated by a variety of stakeholders including scientists, community activists and government officials. Given the high profile and potential promise of TasP in combatting the global HIV epidemic, an explicit and transparent research priority-setting process is critical to inform ongoing ethical discussions pertaining to TasP. ⋯ Ongoing research and normative deliberation is required in order to successfully and ethically scale-up TasP within the continuum of HIV care models. Based on the results of this scoping review, we identify several ethical and implementation dimensions that hold promise for informing the process of scaling up TasP and that could benefit from new research.
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Research activities in sub-Saharan Africa may be limited to delegated tasks due to the strong control from Western collaborators, which could lead to scientific production of little value in terms of its impact on social and economic innovation in less developed areas. However, the current contexts of international biomedical research including the development of public-private partnerships and research institutions in Africa suggest that scientific activities are growing in sub-Saharan Africa. This study aims to describe the patterns of clinical research activities at a sub-Saharan biomedical research center. ⋯ Further research questions and methods in social sciences should comprehensively address the construction of scientific content with the social, economic and cultural contexts surrounding research activities.
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Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies. ⋯ Our findings have implications for recruitment, informed consent, and the dichotomizing of medical/health procedures as either research or treatment. Those with low health status may be more vulnerable to potential coercion, suggesting the need for a more cautious approach to obtaining consent. Our findings also indicate the need for boundary work in order to better differentiate treatment and research. It is important however to acknowledge a categorical ambiguity; it is not always the case that people are misinformed about the possible benefits of research procedures (i.e., therapeutic misconception); our participants were aware that the primary purpose of research is to gain new knowledge yet they also identified a range of actual health benefits arising from their participation.
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In the course of the last four decades, the profession of physiotherapy has progressively expanded its scope of responsibility and its focus on professional autonomy and evidence-based clinical practice. To preserve professional autonomy, it is crucial for the physiotherapy profession to meet society's expectations and demands of professional competence as well as ethical competence. Since it is becoming increasingly popular to choose a carrier in private practice in Denmark this context constitutes the frame of this study. Physiotherapy in private practice involves mainly a meeting between two partners: the physiotherapist and the patient. In the meeting, power asymmetry between the two partners is a condition that the physiotherapist has to handle. The aim of this study was to explore whether ethical issues rise during the first physiotherapy session discussed from the perspective of the physiotherapists in private practice. ⋯ Ethical issues do occur within the first session, the consciousness about ethical issues differs in Danish physiotherapy private practice, and reflections and acts are to a lesser extent based on awareness of ethical theories, principles and ethical guidelines. Beneficence towards the patient is a fundamental aspect of the physiotherapists' understanding of the first session. However, if the physiotherapist lacks a deeper ethical awareness, the physiotherapist may reason and/or act ethically to a varying extent: only an ethically conscious physiotherapist will know when he or she reflects and acts ethically. Further exploration of ethical issues in private practice is recommendable, and as management policy is deeply embedded within the Danish public sector there are reasons to explore public contexts of physiotherapy as well.