Tissue banking (or biobanking), thought by many to be an essential form of medical research, has raised a number of ethical issues that highlight a need to understand the beliefs and values of tissue donors, including the motivations underlying consent or refusal to donate. Data from our qualitative study of the legal, social and ethical issues surrounding tumor banking in New South Wales, Australia, shows that participants' attitudes to donation of tumor tissue for research are partially captured by theories of weak altruism and social exchange. However, we argue that the psychological rewards of value transformation described by Thompson's rubbish theory provide additional insights into participants' attitudes to tumor donation. We believe our data provides sufficient justification for an approach to regulation of tumor banking that is aimed at fostering a relationship based on the notions of virtuous reassignment and social exchange.
Little is known about why patients with cancer do or do not donate their biopsied/cancerous tissue to research. A review of the literature on motivations to participate in clinical research and to donate tissues/organs for therapeutic use may provide some insights relevant to tumour banking research. While more research is necessary, a better understanding of the factors that motivate patients to give or refuse consent to tumour banking may ultimately improve consent practices, public trust and donation rates.
Post-treatment surveillance of advanced ovarian cancer involves regular testing of asymptomatic patients using the CA125 test. This practice is based on a rationale that is not supported by evidence from clinical trials. This paper aims to stimulate critical reflection concerning the effect of investigative tests on clinical decisions and interactions, and the experience of illness, particularly in the context of advanced malignant disease. Drawing on the idea of the "medical gaze", and building on previous health communication research, we present an analysis of in-depth interviews and psychometric tests collected in a prospective study of 20 Australian women with advanced ovarian cancer conducted between 2006 and 2009. We describe the demands placed on patients by the use of the CA125 test, some hazards it creates for decision-making, and some of the test's subjective benefits. It is widely believed that the CA125 test generates anxiety among patients, and the proposed solution is to educate women more about the test. We found no evidence that anxiety was a problem requiring a response over and above existing services. We conclude that the current debate is simplistic and limited. Focussing on patient anxiety does not account for other important effects of post-treatment surveillance, and educating patients about the test is unlikely to mitigate anxiety because testing is part of a wider process by which patients become aware of a disease that -once it has relapsed -will certainly kill them in the near future.
Abstract:The news media is frequently criticised for failing to support the goals of government health campaigns. But is this necessarily the purpose of the media? We suggest that, while the media has an important role in disseminating health messages, it is a mistake to assume that the media should serve the interests of government as it has its own professional ethics, norms, values, structures and roles that extend well beyond the interests of the health sector, and certainly beyond those of the government. While considerable attention has been given to the ways in which uncritical publication of industry perspectives by news media can negatively impact on public understandings of health and health behaviours, we would argue that it is equally important that journalists not become the 'lapdogs' of government interests. Further, we suggest that the interests of public health may be served more by supporting the ongoing existence of an independent media than by seeking to overdetermine its purpose or scope.
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