1,252 research outputs found

    The Candidate as Convict

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    The Validity and Timing of the ABR Core Exam

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    The American Board of Radiology's (ABR) new Core Exam is not working, at least not as well as it needs to. Having helped to prepare candidates (RG), studied for and taken the exam (WK), and talked with hundreds of candidates who have taken the exam (RG and WK), we believe that that one aspect of the exam, its validity, can be significantly enhanced. Just as we expect candidates for board certification and practicing radiologists to measure up to the high standards, so we should subject the board exam to continuous scrutiny, seeking opportunities to rectify errors and enhance the exam's overall quality, with a view to better promoting excellence in radiology practice and the care of patients. Here we focus on two exam parameters: validity and timing

    Ethics as an act of listening

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    Over the past fifty years concerns regarding ethical and human rights abuses arising from biomedical research have led to the establishment of sophisticated processes for ethical oversight of research and to increasing regulation of many aspects of the research endeavour. Research using human tissue collections (tissue banking research) is no exception, with evermore stringent regulations emerging in response to concerns about consent, privacy and commercialisation. These measures are perfectly compatible with central bioethical concerns such as the need to ensure autonomy and the right to control one’s body and personal information, and the need to protect vulnerable research subjects from harm. So why, one might ask, are scientists so resentful of these regulations and so concerned about their potential adverse impact (e.g. Furness 2004)? Does this mean that the scientific community is dangerously insensitive to the public’s mistrust and desire for autonomy? Or are they more aware of public values? It is possible to theorise endlessly about such matters, but at some point it is necessary to carry out empirical research into public attitudes and values. While the ‘empirical turn’ in bioethics has its limitations and is primarily descriptive, rather than normative (Sugarman 2004), as Chandros Hull et al remind us, if bioethics does not accurately reflect community values may impede science and misrepresent the needs of “vulnerable” populations

    Access to the Kidney Transplant Waiting List – a time for reflection

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    The limited availability of deceased donor kidneys for transplantation in Australia continues to be a matter of concern. Analysis of registry data suggests that the current renal transplant waiting list under-represents the real demand for three reasons. Firstly, a very low proportion of dialysis patients across all age groups are wait-listed for kidney transplantation; secondly, the percentage of dialysis patients listed for transplantation has fallen over time across all Australian states and territories; and thirdly, the number of patients wait-listed varies significantly across the country. We explore possible reasons for these issues and call for new eligibility criteria that are both transparent and justifiable and balance equity and utility

    Financial motives drive some doctors’ decisions to offer IVF

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    Around one in 25 Australian babies are conceived using assisted reproductive technologies (ART), including in-vitro fertilisation (IVF). These interventions are almost all offered in private fertility clinics, backed by a thriving fertility industry. Women who are deemed eligible for IVF can have an unlimited number of cycles subsidised by Medicare, but out-of–pocket costs can range from several hundred to several thousand dollars per cycle. Our research, published today in the journal Human Fertility, suggests the money being made from IVF could be subtly changing the advice doctors give. Informed consent Although IVF is a well-established procedure, it is not without its risks. These include ovarian hyperstimulation syndrome, where hormone levels rise too much (causing abdominal swelling, nausea, vomiting and diarrhoea); obstetric complications such as premature delivery; and psychological distress, especially if the process fails. Although long-term outcomes for children conceived using IVF appear to be similar to non-IVF children, questions remain about possible harmful impacts, including developmental abnormalities and cancer. Given the financial, physical and psychological burdens of IVF, patients must be able to make informed decisions about whether to pursue these treatments in the first place, and when to stop. So it’s concerning that couples are often oversold the likelihood of success

    Access to the Kidney Transplant Waiting List – a time for reflection

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    postprintThe limited availability of deceased donor kidneys for transplantation in Australia continues to be a matter of concern. Analysis of registry data suggests that the current renal transplant waiting list under-represents the real demand for three reasons. Firstly, a very low proportion of dialysis patients across all age groups are wait-listed for kidney transplantation; secondly, the percentage of dialysis patients listed for transplantation has fallen over time across all Australian states and territories; and thirdly, the number of patients wait-listed varies significantly across the country. We explore possible reasons for these issues and call for new eligibility criteria that are both transparent and justifiable and balance equity and utility

    The management of children with Spinal Muscular Atrophy Type 1 in Australia

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    Aims: To (1) estimate the prevalence of Spinal Muscular Atrophy Type 1 (SMA 1); (2) describe what practices characterise end-of-life care of patients with SMA 1; (3) ascertain whether a consistent approach to the management of these patients exists in Australia. Methods: An audit of the Australasian pathology laboratories offering the diagnostic SMN1 deletion test was conducted for patients diagnosed with SMA in Australia for 2010 and 2011. In addition, a retrospective clinical audit was conducted in eight major Australian paediatric hospitals of the end-of-life care provided to children with confirmed SMA 1 from 2005 to 2010. Results: 35 children were included in the clinical audit, accounting for an estimated 61% of children diagnosed with SMA 1 from 2005-2010. 26% were ventilated invasively, only two of whom were intubated after the diagnosis was confirmed. No children were ventilated long-term (>90 days) or had a tracheostomy performed. Nasogastric tube feeding was a common measure to support adequate nutritional intake. Total parenteral nutrition, gastrostomy and fundoplication were not provided for any children. Conflict over end-of-life care decisions was documented in one instance, without the involvement of a guardianship tribunal. Conclusion: There appears to be a consistent approach in the management of children with SMA 1 in Australia, which can be characterised as ‘actively managed dying.’ This study could contribute to the development of Australian consensus guidelines for the management of these children. These results also highlight a number of ethical issues related to the management of children with SMA 1

    An empirical reappraisal of public trust in biobanking research: rethinking restrictive consent requirements

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    Collections of human tissue removed from patients in the course of medical diagnosis or therapy are believed to be an increasingly important resource for medical research (biobank research). As a result of a number of tissue-related "scandals" and increasing concern about ownership and privacy, the requirements to obtain consent from tissue donors are becoming increasingly stringent. The authors' data show that members of the general public perceive academic biobank researchers and their institutions to be highly trustworthy and do not see the need for recurrent, project-specific consent. They argue, on the basis of their empirical findings, that we should question the trend, at least in some settings, toward ever more stringent consent requirements for the use of tissue in research. They argue that this approach, while perhaps counterintuitive in the current regulatory environment, can be both ethically and legally sound so long as channels of communication are maintained and third-party relationships are tightly controlled

    Manifesto on Art, Design and Social Science - Method as Speculative Event.

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    Proposes that techniques from art and design can be used within social science research as part of a speculative methodology. Provides a set of heuristic principles for speculative method, characterizing it as processual, performative, playful, promising and propositional. Keywords: speculative, method, art, design, social science, researchn/
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