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Journal of Bioethical Inquiry

Orla O'Donovan, Deirdre Madden
Drawing on an analysis of complaint files that we conducted for the Irish Medical Council (Madden and O'Donovan 2015), this paper offers three possible explanations for the gap between the ubiquity of official commitments to taking patients' complaints seriously and medical professional regulators' dismissal-as not warranting an inquiry-of the vast majority of complaints submitted by members of the public. One explanation points to the "regulatory illiteracy" of many complainants, where the remit and threshold of seriousness of regulators is poorly understood by the general public...
July 10, 2018: Journal of Bioethical Inquiry
Ariane Lewis, David Greer
Recently, there have been a number of lawsuits in the United States in which families objected to performance of apnoea testing for determination of brain death. The courts reached conflicting determinations in these cases. We discuss the medicolegal complications associated with apnoea testing that are highlighted by these cases and our position that the decision to perform apnoea testing should be made by clinicians, not families, judges, or juries.
July 6, 2018: Journal of Bioethical Inquiry
Bernadette J Richards
No abstract text is available yet for this article.
July 5, 2018: Journal of Bioethical Inquiry
Charlotte Blease, Keith J Geraghty
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFS-and by extension, ME/CFS patient organizations (POs)-exhibit "militant" social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim of "militant" patient activism...
July 3, 2018: Journal of Bioethical Inquiry
Achim Rosemann, Huiyu Luo
Bioethical debates on the use of human embryos and oocytes for stem cell research have often been criticized for the lack of empirical insights into the perceptions and experiences of the women and couples who are asked to donate these tissues in the IVF clinic. Empirical studies that have investigated the attitudes of IVF patients and citizens on the (potential) donation of their embryos and oocytes have been scarce and have focused predominantly on the situation in Europe and Australia. This article examines the viewpoints on the donation of embryos for stem cell research among IVF patients and students in China...
July 2, 2018: Journal of Bioethical Inquiry
Marsha Greene, Zubin Master
This paper presents an overview of the key ethical questions of performing gene editing research on military service members. The recent technological advance in gene editing capabilities provided by CRISPR/Cas9 and their path towards first-in-human trials has reinvigorated the debate on human enhancement for non-medical purposes. Human performance optimization has long been a priority of military research in order to close the gap between the advancement of warfare and the limitations of human actors. In spite of this focus on temporary performance improvement, biomedical enhancement is an extension of these endeavours and the ethical issues of such research should be considered...
July 2, 2018: Journal of Bioethical Inquiry
Daniela Rojatz, Julia Fischer, Hester Van de Bovenkamp
Governments are increasingly inviting patient organizations (POs) to participate in healthcare policymaking. By inviting POs that claim to represent patients, representation comes into being. However, little is known about the circumstances under which governments accept POs as patient representatives. Based on the analysis of relevant legislation, this article investigates the criteria that self-help organizations (SHOs), a special type of PO, must fulfil in order to be accepted as patient representatives by governments in Austria and Germany...
July 2, 2018: Journal of Bioethical Inquiry
Michael A Ashby, Bronwen Morrell
No abstract text is available yet for this article.
July 2, 2018: Journal of Bioethical Inquiry
Sumytra Menon, Voo Teck Chuan
No abstract text is available yet for this article.
July 2, 2018: Journal of Bioethical Inquiry
Hester M van de Bovenkamp, Hans Vollaard
In many countries patient involvement is high on the healthcare policy agenda, which includes patient representation in collective decision-making. Patient organizations are generally considered to be important representatives of patients. Other actors also claim to represent patients in decision-making, such as politicians, healthcare professionals, and client advisory councils. In this paper we take a broad view of patient representation, examining all the actors claiming to represent patients in the Dutch debate on the decentralization of care...
June 7, 2018: Journal of Bioethical Inquiry
Neil Levy
There is a lively debate over who is to blame for the harms arising from unhealthy behaviours, like overeating and excessive drinking. In this paper, I argue that given how demanding the conditions required for moral responsibility actually are, we cannot be highly confident that anyone is ever morally responsible. I also adduce evidence that holding people responsible for their unhealthy behaviours has costs: it undermines public support for the measures that are likely to have the most impact on these harms...
June 6, 2018: Journal of Bioethical Inquiry
Rob Baggott, Kathryn L Jones
This paper draws on nearly two decades of research on health consumer and patients' organizations (HCPOs) in the United Kingdom. In particular, it addresses questions of representation and legitimacy in the health policy process. HCPOs claim to represent the collective interests of patients and others such as relatives and carers. At times they also make claims to represent the wider public interest. Employing Pitkin's classic typology of formalistic, descriptive, symbolic, and substantive representation, the paper explores how and in what sense HCPOs represent their constituencies...
May 25, 2018: Journal of Bioethical Inquiry
Julian J Koplin
In Markets Without Limits and a series of related papers, Jason Brennan and Peter Jaworski argue that it is morally permissible to buy and sell anything that it is morally permissible to possess and exchange outside of the market. Accordingly, we should (Brennan and Jaworski argue) open markets in "contested commodities" including blood, gametes, surrogacy services, and transplantable organs. This paper clarifies some important aspects of the case for market boundaries and in so doing shows why there are in fact moral limits to the market...
May 25, 2018: Journal of Bioethical Inquiry
Gabriella Foe, Jonathan Hellmann, Rebecca A Greenberg
Ethical dilemmas in critical care may cause healthcare practitioners to experience moral distress: incoherence between what one believes to be best and what occurs. Given that paediatric decision-making typically involves parents, we propose that parents can also experience moral distress when faced with making value-laden decisions in the neonatal intensive care unit. We propose a new concept-that parents may experience "moral schism"-a genuine uncertainty regarding a value-based decision that is accompanied by emotional distress...
May 25, 2018: Journal of Bioethical Inquiry
Jake Greenblum, T J Kasperbauer
Aulisio and Arora argue that the moral significance of value imposition explains the moral distinction between traditional conscientious objection and non-traditional conscientious objection. The former objects to directly performing actions, whereas the latter objects to indirectly assisting actions on the grounds that indirectly assisting makes the actor morally complicit. Examples of non-traditional conscientious objection include objections to the duty to refer. Typically, we expect physicians who object to a practice to refer, but the non-traditional conscientious objector physician refuses to refer...
May 22, 2018: Journal of Bioethical Inquiry
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
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
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
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
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
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