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Journal of Bioethical Inquiry

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https://www.readbyqxmd.com/read/29022226/parents-and-physicians-perceptions-of-children-s-participation-in-decision-making-in-paediatric-oncology-a-quantitative-study
#1
Michael Rost, Tenzin Wangmo, Felix Niggli, Karin Hartmann, Heinz Hengartner, Marc Ansari, Pierluigi Brazzola, Johannes Rischewski, Maja Beck-Popovic, Thomas Kühne, Bernice S Elger
The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient (<18 years). Surveys were statistically analysed by comparing physicians' and parents' perspectives and by evaluating factors associated with children's actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children...
October 11, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29022172/the-president-s-physician-an-african-play-emmanuel-babatunde-omobowale-2004-all-saints-publishers-ibadan-978-978-37727-3-1-77-pp
#2
Joseph Ajagunmolu Mayaki
This review examines issues relating to biomedical ethics and literature in the African drama The President's Physician by Emmanuel Babatunde Omobowale. The play investigates the psychological dilemma of Doctor Bituki Warunga, a personal physician to General Kalunga Ntibantunganyah who brutally and inhumanely rules Wavaria, a fictional African country. The doctor is faced with deciding to uphold the ethics of his profession versus terminating the tyrant's life to set the nation free. The play aims to help budding medical doctors rightly inculcate the principles of medical ethics-autonomy, beneficence, competence, and power-by providing a fictional platform to investigate difficult issues that can arise in clinical practice...
October 11, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28988327/the-ethics-of-biomedical-big-data-brent-daniel-mittelstadt-and-luciano-floridi-eds-2016-springer-international-publishing-cham-switzerland-978-3-319-33523-0-480-pp
#3
Paul H Mason
The availability of diverse sources of data related to health and illness from various types of modern communication technology presents the possibility of augmenting medical knowledge, clinical care, and the patient experience. New forms of data collection and analysis will undoubtedly transform epidemiology, public health, and clinical practice, but what ethical considerations come in to play? With a view to analysing the ethical and regulatory dimensions of burgeoning forms of biomedical big data, Brent Daniel Mittelstadt and Luciano Floridi have brought together thirty scholars in an edited volume that forms part of Springer's Law, Governance and Technology book series in a collection titled The Ethics of Biomedical Big Data...
October 7, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28983861/the-issues-of-freedom-and-happiness-in-moral-bioenhancement-continuing-the-debate-with-a-reply-to-harris-wiseman
#4
Vojin Rakić
During the previous years, Harris Wiseman has devoted substantial attention to my stance on voluntary moral bioenhancement. He argued that he has been influenced by that position, but nonetheless criticized it. I haven't replied to his criticisms yet and wish to do so now. One of the reasons is to avoid my position being misrepresented. By replying to Wiseman's criticisms, I also wish to clarify those issues in my standpoint that might have given rise to some of the misinterpretations. With the same purpose in mind, I will demarcate my concept of voluntary moral bioenhancement from related standpoints, in particular from Persson and Savulescu's notion of compulsory moral bioenhancement that, as I argued, diminishes our freedom (of the will)...
October 5, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28983835/biomedical-big-data-new-models-of-control-over-access-use-and-governance
#5
Effy Vayena, Alessandro Blasimme
Empirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be openly stated in informed consent documents or be implicit in the norms of confidentiality that govern the relationships of patients and healthcare professionals...
October 5, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28983821/digital-humanitarians-how-big-data-is-changing-the-face-of-humanitarian-response-patrick-meier-2015-crc-press-boca-raton-fl-978-1-4822-4839-5-259-pp
#6
Anushree Dave
This is a review of Patrick Meier's 2015 book, Digital Humanitarians: How Big Data Is Changing the Face of Humanitarian Response. The book explores the role of technologies such as high-resolution satellite imagery, online social media, drones, and artificial intelligence in humanitarian responses during disasters such as the 2010 Haiti earthquake. In this analysis, the book is examined using a humanitarian health ethics perspective.
October 5, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28983787/morally-relevant-similarities-and-differences-between-assisted-dying-practices-in-paradigm-and-non-paradigm-circumstances-could-they-inform-regulatory-decisions
#7
Jeffrey Kirby
There has been contentious debate over the years about whether there are morally relevant similarities and differences between the three practices of continuous deep sedation until death, physician-assisted suicide, and voluntary euthanasia. Surprisingly little academic attention has been paid to a comparison of the uses of these practices in the two types of circumstances in which they are typically performed. A comparative domains of ethics analysis methodological approach is used in the paper to compare 1) the use of the three practices in paradigm circumstances, and 2) the use of the practices in paradigm circumstances to their use in non-paradigm circumstances...
October 5, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28980135/big-data-and-health-research-the-governance-challenges-in-a-mixed-data-economy
#8
Søren Holm, Thomas Ploug
Denmark is a society that has already moved towards Big Data and a Learning Health Care System. Data from routine healthcare has been registered centrally for years, there is a nationwide tissue bank, and there are numerous other available registries about education, employment, housing, pollution, etcetera. This has allowed Danish researchers to study the link between exposures, genetics and diseases in a large population. This use of public registries for scientific research has been relatively uncontroversial and has been supported by facilitative regulation that allows data to be used without the consent of data subjects...
October 4, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28913771/criminal-prohibition-of-wrongful-re%C3%A2-identification-legal-solution-or-minefield-for-big-data
#9
Mark Phillips, Edward S Dove, Bartha M Knoppers
The collapse of confidence in anonymization (sometimes also known as de-identification) as a robust approach for preserving the privacy of personal data has incited an outpouring of new approaches that aim to fill the resulting trifecta of technical, organizational, and regulatory privacy gaps left in its wake. In the latter category, and in large part due to the growth of Big Data-driven biomedical research, falls a growing chorus of calls for criminal and penal offences to sanction wrongful re-identification of "anonymized" data...
September 14, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28913595/health-professionals-make-their-choice-pharmaceutical-industry-leaders-understandings-of-conflict-of-interest
#10
Quinn Grundy, Lisa Tierney, Christopher Mayes, Wendy Lipworth
Conflicts of interest, stemming from relationships between health professionals and the pharmaceutical industry, remain a highly divisive and inflammatory issue in healthcare. Given that most jurisdictions rely on industry to self-regulate with respect to its interactions with health professionals, it is surprising that little research has explored industry leaders' understandings of conflicts of interest. Drawing from in-depth interviews with ten pharmaceutical industry leaders based in Australia, we explore the normalized and structural management of conflicts of interest within pharmaceutical companies...
September 14, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28815488/exploring-vaccine-hesitancy-through-an-artist-scientist-collaboration-visualizing-vaccine-critical-parents-health-beliefs
#11
Kaisu Koski, Johan Holst
This project explores vaccine hesitancy through an artist-scientist collaboration. It aims to create better understanding of vaccine hesitant parents' health beliefs and how these influence their vaccine-critical decisions. The project interviews vaccine-hesitant parents in the Netherlands and Finland and develops experimental visual-narrative means to analyse the interview data. Vaccine-hesitant parents' health beliefs are, in this study, expressed through stories, and they are paralleled with so-called illness narratives...
August 16, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28815468/a-feminist-critique-of-justifications-for-sex-selection
#12
Tereza Hendl
This paper examines dominant arguments advocating for the procreative right to undergo sex selection for social reasons, based on gender preference. I present four of the most recognized and common justifications for sex selection: the argument from natural sex selection, the argument from procreative autonomy, the argument from family balancing, and the argument from children's well-being. Together these represent the various means by which scholars aim to defend access to sex selection for social reasons as a legitimate procreative choice...
August 16, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28815434/measles-vaccination-is-best-for-children-the-argument-for-relying-on-herd-immunity-fails
#13
Johan Christiaan Bester
This article examines an argument which may negatively influence measles vaccination uptake. According to the argument, an individual child in a highly vaccinated society may be better off by being non-vaccinated; the child does not risk vaccine adverse effects and is protected against measles through herd immunity. Firstly, the conclusion of the argument is challenged by showing that herd immunity's protection is unreliable and inferior to vaccination. Secondly, the logic of the argument is challenged by showing that the argument is inherently self-defeating and therefore logically inconsistent...
August 16, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28815385/stretching-the-boundaries-of-parental-responsibility-and-new-legal-guidelines-for-determination-of-brain-death
#14
Bernadette Richards, Thaddeus Mason Pope
No abstract text is available yet for this article.
August 16, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28815381/a-virtuous-death-organ-donation-and-eudaimonia
#15
EDITORIAL
David M Shaw
No abstract text is available yet for this article.
August 16, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28815379/a-450-year-old-turkish-poem-art-as-a-qualitative-investigation-tool-buddhist-deathways-karma-and-eudaimonia-in-death-and-organ-donation-the-wonders-of-truly-diverse-bioethical-inquiry
#16
EDITORIAL
https://www.readbyqxmd.com/read/28721607/access-to-high-cost-cancer-medicines-through-the-lens-of-an-australian-senate-inquiry-defining-the-goods-at-stake
#17
Narcyz Ghinea, Miles Little, Wendy Lipworth
Cancer is a major burden on populations and health systems internationally. The development of innovative cancer medicines is seen as a significant part of the solution. These new cancer medicines are, however, expensive, leading to limited or delayed access and disagreements among stakeholders about which medicines to fund. There is no obvious resolution to these disagreements, with stakeholders holding firmly to divergent positions. Access to cancer medicines was recently explored in Australia in a Senate Inquiry into the Availability of New, Innovative, and Specialist Cancer Drugs in Australia...
July 18, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28634770/medical-negligence-determinations-the-right-to-try-and-expanded-access-to-innovative-treatments
#18
Denise Meyerson
This article considers the issue of expanded access to innovative treatments in the context of recent legislative initiatives in the United Kingdom and the United States. In the United Kingdom, the supporters of legislative change argued that the common law principles governing medical negligence are a barrier to innovation. In an attempt to remove this perceived impediment, two bills proposed that innovating doctors sued for negligence should be able to rely in their defence on the fact that their decision to innovate was "responsible...
June 20, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28634769/decision-making-capacity-and-unusual-beliefs-two-contentious-cases-australasian-association-of-bioethics-and-health-law-john-mcphee-law-student-essay-prize-2016
#19
Brent Hyslop
Decision-making capacity is a vital concept in law, ethics, and clinical practice. Two legal cases where capacity literally had life and death significance are NHS Trust v Ms T [2004] and Kings College Hospital v C [2015]. These cases share another feature: unusual beliefs. This essay will critically assess the concept of capacity, particularly in relation to the unusual beliefs in these cases. Firstly, the interface between capacity and unusual beliefs will be examined. This will show that the "using and weighing of information" is the pivotal element in assessment...
June 20, 2017: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/28634768/futile-treatment-a-review
#20
Lenko Šarić, Ivana Prkić, Marko Jukić
The main goal of intensive care medicine is helping patients survive acute threats to their lives, while preserving and restoring life quality. Because of medical advancements, it is now possible to sustain life to an extent that would previously have been difficult to imagine. However, the goals of medicine are not to preserve organ function or physiological activity but to treat and improve the health of a person as a whole. When dealing with medical futilities, physicians and other members of the care team should be aware of some ethical principles...
June 20, 2017: Journal of Bioethical Inquiry
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