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Journal of Bioethical Inquiry

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https://www.readbyqxmd.com/read/29767375/strategies-to-guide-the-return-of-genomic-research-findings-an-australian-perspective
#1
Lisa Eckstein, Margaret Otlowski
In Australia, along with many other countries, limited guidance or other support strategies are currently available to researchers, institutional research ethics committees, and others responsible for making decisions about whether to return genomic findings with potential value to participants or their blood relatives. This lack of guidance results in onerous decision-making burdens-traversing technical, interpretative, and ethical dimensions-as well as uncertainty and inconsistencies for research participants...
May 16, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29736897/the-normalization-of-intersex-bodies-and-othering-of-intersex-identities-in-australia
#2
EDITORIAL
Morgan Carpenter
Once described as hermaphrodites and later as intersex people, individuals born with intersex variations are routinely subject to so-called "normalizing" medical interventions, often in childhood. Opposition to such practices has been met by attempts to discredit critics and reasserted clinical authority over the bodies of women and men with "disorders of sex development." However, claims of clinical consensus have been selectively constructed and applied and lack evidence. Limited transparency and lack of access to justice have helped to perpetuate forced interventions...
May 7, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29667151/ethical-and-legal-concerns-with-nevada-s-brain-death-amendments
#3
Greg Yanke, Mohamed Y Rady, Joseph L Verheijde
In early 2017, Nevada amended its Uniform Determination of Death Act (UDDA), in order to clarify the neurologic criteria for the determination of death. The amendments stipulate that a determination of death is a clinical decision that does not require familial consent and that the appropriate standard for determining neurologic death is the American Academy of Neurology's (AAN) guidelines. Once a physician makes such a determination of death, the Nevada amendments require the withdrawal of life-sustaining treatment within twenty-four hours with limited exceptions...
April 17, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29663121/the-beneficence-of-hope-findings-from-a-qualitative-study-with-gout-and-diabetes-patients
#4
Isabelle Wienand, Milenko Rakic, David Shaw, Bernice Elger
This paper explores the importance of hope as a determining factor for patients to participate in first-in-human trials for synthetic biology therapies. This paper focuses on different aspects of hope in the context of human health and well-being and explores the varieties of hope expressed by patients. The research findings are based on interview data collected from stable gout and diabetes patients. Three concepts of hope have emerged from the interviews: hope as certainty (H1); hope as reflective uncertainty (H2); hope as self-therapy (H3)...
April 16, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29623555/the-power-of-knowledge-responses-to-change-and-the-gymnastics-of-causation
#5
EDITORIAL
Michael A Ashby, Bronwen Morrell
No abstract text is available yet for this article.
April 5, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29564710/correction-to-predictive-psychiatric-genetic-testing-in-minors-an-exploration-of-the-non-medical-benefits
#6
Arianna Manzini, Danya F Vears
The article [Title], written by [AuthorNames], was originally published electronically on the publisher's internet portal (currently SpringerLink) on [date of OnlineFirst publication] without open access.
March 21, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29557062/beyond-compliance-checking-a-situated-approach-to-visual-research-ethics
#7
Caroline Lenette, Jessica R Botfield, Katherine Boydell, Bridget Haire, Christy E Newman, Anthony B Zwi
Visual research methods like photography and digital storytelling are increasingly used in health and social sciences research as participatory approaches that benefit participants, researchers, and audiences. Visual methods involve a number of additional ethical considerations such as using identifiable content and ownership of creative outputs. As such, ethics committees should use different assessment frameworks to consider research protocols with visual methods. Here, we outline the limitations of ethics committees in assessing projects with a visual focus and highlight the sparse knowledge on how researchers respond when they encounter ethical challenges in the practice of visual research...
March 19, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29550975/the-voice-is-as-mighty-as-the-pen-integrating-conversations-into-advance-care-planning
#8
Kunal Bailoor, Leslie H Kamil, Ed Goldman, Laura M Napiewocki, Denise Winiarski, Christian J Vercler, Andrew G Shuman
Advance care planning allows patients to articulate preferences for their medical treatment, lifestyle, and surrogate decision-makers in order to anticipate and mitigate their potential loss of decision-making capacity. Written advance directives are often emphasized in this regard. While these directives contain important information, there are several barriers to consider: veracity and accuracy of surrogate decision-makers in making choices consistent with the substituted judgement standard, state-to-state variability in regulations, literacy issues, lack of access to legal resources, lack of understanding of medical options, and cultural disparities...
March 17, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29541925/can-the-ethical-best-practice-of-shared-decision-making-lead-to-moral-distress
#9
Trisha M Prentice, Lynn Gillam
When healthcare professionals feel constrained from acting in a patient's best interests, moral distress ensues. The resulting negative sequelae of burnout, poor retention rates, and ultimately poor patient care are well recognized across healthcare providers. Yet an appreciation of how particular disciplines, including physicians, come to be "constrained" in their actions is still lacking. This paper will examine how the application of shared decision-making may contribute to the experience of moral distress for physicians and why such distress may go under-recognized...
March 14, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29532387/moving-forward-on-consent-practices-in-australia
#10
Rebekah E McWhirter, Lisa Eckstein
Allowing persons to make an informed choice about their participation in research is a pre-eminent ethical and legal requirement. Almost universally, this requirement has been addressed through the provision of written patient information sheets and consent forms. Researchers and others have raised concerns about the extent to which such forms-particularly given their frequent lengthiness and complexity-provide participants with the tools and knowledge necessary for autonomous decision-making. Concerns are especially pronounced for certain participant groups, such as persons with low literacy and Indigenous persons...
March 12, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29532386/review-of-the-ethical-issues-of-a-biomarker-based-diagnoses-in-the-early-stage-of-alzheimer-s-disease
#11
Gwendolien Vanderschaeghe, Kris Dierickx, Rik Vandenberghe
BACKGROUND: Today, many healthcare or dementia organizations, clinicians, and companies emphasize the importance of detection of Alzheimer's disease in an early phase. This idea has gained considerable momentum due to the development of biomarkers, the recent FDA and EMA approval of three amyloid tracers, and the failure of a number of recent therapeutic trials conducted in the early dementia phase. On the one hand, an early etiological diagnosis can lead to early and more efficacious intervention...
March 12, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29525895/the-enduring-influence-of-a-dangerous-narrative-how-scientists-can-mitigate-the-frankenstein-myth
#12
Peter Nagy, Ruth Wylie, Joey Eschrich, Ed Finn
Reflecting the dangers of irresponsible science and technology, Mary Shelley's Frankenstein quickly became a mythic story that still feels fresh and relevant in the twenty-first century. The unique framework of the Frankenstein myth has permeated the public discourse about science and knowledge, creating various misconceptions around and negative expectations for scientists and for scientific enterprises more generally. Using the Frankenstein myth as an imaginative tool, we interviewed twelve scientists to explore how this science narrative shapes their views and perceptions of science...
March 10, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29520736/family-resemblances-human-reproductive-cloning-as-an-example-for-reconsidering-the-mutual-relationships-between-bioethics-and-science-fiction
#13
Solveig L Hansen
In the traditions of narrative ethics and casuistry, stories have a well-established role. Specifically, illness narratives provide insight into patients' perspectives and histories. However, because they tend to see fiction as an aesthetic endeavour, practitioners in these traditions often do not realize that fictional stories are valuable moral sources of their own. In this paper I employ two arguments to show the mutual relationship between bioethics and fiction, specifically, science fiction. First, both discourses use imagination to set a scene and determine a perspective...
March 8, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29516332/a-morally-permissible-moral-mistake-reinterpreting-a-thought-experiment-as-proof-of-concept
#14
Nathan Emmerich, Bert Gordjin
This paper takes the philosophical notion of suberogatory acts or morally permissible moral mistakes and, via a reinterpretation of a thought experiment from the medical ethics literature, offers an initial demonstration of their relevance to the field of medical ethics. That is, at least in regards to this case, we demonstrate that the concept of morally permissible moral mistakes has a bearing on medical decision-making. We therefore suggest that these concepts may have broader importance for the discourse on medical ethics and should receive fuller consideration by those working the field...
March 7, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29497995/raising-rates-of-childhood-vaccination-the-trade-off-between-coercion-and-trust
#15
Bridget Haire, Paul Komesaroff, Rose Leontini, C Raina MacIntyre
Vaccination is a highly effective public health strategy that provides protection to both individuals and communities from a range of infectious diseases. Governments monitor vaccination rates carefully, as widespread use of a vaccine within a population is required to extend protection to the general population through "herd immunity," which is important for protecting infants who are not yet fully vaccinated and others who are unable to undergo vaccination for medical or other reasons. Australia is unique in employing financial incentives to increase vaccination uptake, mainly in the form of various childcare payments and tax benefits linked to timely, age-appropriate vaccination...
March 1, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29396799/comparing-non-medical-sex-selection-and-saviour-sibling-selection-in-the-case-of-js-and-ls-v-patient-review-panel-beyond-the-welfare-of-the-child
#16
Malcolm K Smith, Michelle Taylor-Sands
The national ethical guidelines relevant to assisted reproductive technology (ART) have recently been reviewed by the National Health and Medical Research Council (NHMRC). The review process paid particular attention to the issue of non-medical sex selection, although ultimately, the updated ethical guidelines maintain the pre-consultation position of a prohibition on non-medical sex selection. Whilst this recent review process provided a public forum for debate and discussion of this ethically contentious issue, the Victorian case of JS and LS v Patient Review Panel (Health and Privacy) [2011] VCAT 856 provides a rare instance where the prohibition on non-medical sex selection has been explored by a court or tribunal in Australia...
March 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29380195/assisted-dying-in-australia-and-limiting-court-involvement-in-withdrawal-of-nutrition-and-hydration
#17
Bernadette Richards, John Coggon
No abstract text is available yet for this article.
March 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29374386/rearranging-deck-chairs-on-a-sinking-ship-some-reflections-on-ethics-and-reproduction-looking-back-at-2017-and-ahead-at-2018
#18
EDITORIAL
Silvia Camporesi
No abstract text is available yet for this article.
March 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29350320/ethical-implications-in-vaccine-pharmacotherapy-for-treatment-and-prevention-of-drug-of-abuse-dependence
#19
Anna Carfora, Paola Cassandro, Alessandro Feola, Francesco La Sala, Raffaella Petrella, Renata Borriello
Different immunotherapeutic approaches are in the pipeline for the treatment of drug dependence. "Drug vaccines" aim to induce the immune system to produce antibodies that bind to drugs and prevent them from inducing rewarding effects in the brain. Drugs of abuse currently being tested using these new approaches are opioids, nicotine, cocaine, and methamphetamine. In human clinical trials, "cocaine and nicotine vaccines" have been shown to induce sufficient antibody levels while producing few side effects...
March 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29349590/law-as-clinical-evidence-a-new-constitutivemodel-of-medical-education-and-decision-making
#20
Malcolm Parker, Lindy Willmott, Ben White, Gail Williams, Colleen Cartwright
Over several decades, ethics and law have been applied to medical education and practice in a way that reflects the continuation during the twentieth century of the strong distinction between facts and values. We explain the development of applied ethics and applied medical law and report selected results that reflect this applied model from an empirical project examining doctors' decisions on withdrawing/withholding treatment from patients who lack decision-making capacity. The model is critiqued, and an alternative "constitutive" model is supported on the basis that medicine, medical law, and medical ethics exemplify the inevitable entanglement of facts and values...
March 2018: Journal of Bioethical Inquiry
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