Year:

  1.  1
    Embedded Journalists or Empirical Critics? The Nature of The “Gaze” in Bioethics.Michael A. Ashby & Bronwen Morrell - 2018 - Journal of Bioethical Inquiry 15 (3):305-307.
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  2.  1
    Representing Whom? U.K. Health Consumer and Patients’ Organizations in the Policy Process.Rob Baggott & Kathryn L. Jones - 2018 - Journal of Bioethical Inquiry 15 (3):341-349.
    This paper draws on nearly two decades of research on health consumer and patients’ organizations 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 (...)
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  3. Are ME/CFS Patient Organizations “Militant”?Charlotte Blease & Keith J. Geraghty - 2018 - Journal of Bioethical Inquiry 15 (3):393-401.
    Myalgic encephalomyelitis or chronic fatigue syndrome is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations —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” (...)
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  4.  1
    Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective.Lisa Eckstein & Margaret Otlowski - 2018 - Journal of Bioethical Inquiry 15 (3):403-415.
    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. This article draws on a recent targeted consultation conducted by the Australian National Health and Medical (...)
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  5. Parental Moral Distress and Moral Schism in the Neonatal ICU.Gabriella Foe, Jonathan Hellmann & Rebecca A. Greenberg - 2018 - Journal of Bioethical Inquiry 15 (3):319-325.
    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. Schism, unlike moral distress, is not caused (...)
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  6.  4
    Forget Evil: Autonomy, the Physician–Patient Relationship, and the Duty to Refer.Jake Greenblum & T. J. Kasperbauer - 2018 - Journal of Bioethical Inquiry 15 (3):313-317.
    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. (...)
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  7.  6
    Ethical Issues of Using CRISPR Technologies for Research on Military Enhancement.Marsha Greene & Zubin Master - 2018 - Journal of Bioethical Inquiry 15 (3):327-335.
    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 (...)
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  8.  1
    One For All, All For One? Collective Representation in Healthcare Policy.Karin Jongsma, Nitzan Rimon-Zarfaty, Aviad Raz & Silke Schicktanz - 2018 - Journal of Bioethical Inquiry 15 (3):337-340.
    Healthcare collectives, such as patient organizations, advocacy groups, disability organizations, professional associations, industry advocates, social movements, and health consumer organizations have been increasingly involved in healthcare policymaking. Such collectives are based on the idea that individual interests can be aggregated into collective interests by participation, deliberation, and representation. The topic of collectivity in healthcare, more specifically collective representation, has only rarely been addressed in bioethics. This symposium, entitled: “Collective Representation in Healthcare Policy” of the Journal of Bioethical Inquiry draws attention (...)
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  9.  7
    Commodification and Human Interests.Julian J. Koplin - 2018 - Journal of Bioethical Inquiry 15 (3):429-440.
    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 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 (...)
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  10.  11
    Responsibility as an Obstacle to Good Policy: The Case of Lifestyle Related Disease.Neil Levy - 2018 - Journal of Bioethical Inquiry 15 (3):459-468.
    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 (...)
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  11.  2
    Medicolegal Complications of Apnoea Testing for Determination of Brain Death.Ariane Lewis & David Greer - 2018 - Journal of Bioethical Inquiry 15 (3):417-428.
    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.
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  12.  1
    Mitochondrial Replacement Techniques.Jacquelyne Luce - 2018 - Journal of Bioethical Inquiry 15 (3):381-392.
    In this article, I draw on research carried out in Europe, primarily in Germany, on patients’ and scientists’ perspectives on mitochondrial replacement techniques in order to explore some of the complexities related to collective representation in health governance, which includes the translation of emerging technologies into clinical use. Focusing on observations, document analyses, and interviews with eight mitochondrial disease patient organization leaders, this contribution extends our understanding of the logic and meanings behind the ways in which patient participation and collective (...)
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  13.  2
    Why Do Medical Professional Regulators Dismiss Most Complaints From Members of the Public? Regulatory Illiteracy, Epistemic Injustice, and Symbolic Power.Orla O’Donovan & Deirdre Madden - 2018 - Journal of Bioethical Inquiry 15 (3):469-478.
    Drawing on an analysis of complaint files that we conducted for the Irish Medical Council, 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. (...)
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  14.  2
    Social Media: The Unnamed Plaintiff.Bernadette J. Richards - 2018 - Journal of Bioethical Inquiry 15 (3):309-312.
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  15.  1
    Legislating Patient Representation: A Comparison Between Austrian and German Regulations on Self-Help Organizations as Patient Representatives.Daniela Rojatz, Julia Fischer & Hester Van de Bovenkamp - 2018 - Journal of Bioethical Inquiry 15 (3):351-358.
    Governments are increasingly inviting patient organizations 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, a special type of PO, must fulfil in order to be accepted as patient representatives by governments in Austria and Germany. Thereby, it aims to contribute to the (...)
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  16.  1
    Attitudes Towards the Donation of Human Embryos for Stem Cell Research Among Chinese IVF Patients and Students.Achim Rosemann & Huiyu Luo - 2018 - Journal of Bioethical Inquiry 15 (3):441-457.
    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 donation of their embryos and oocytes have been scarce and have focused predominantly on the situation in Europe and Australia. This article (...)
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  17.  3
    Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel.Silke Schicktanz, Nitzan Rimon-Zarfaty, Aviad Raz & Karin Jongsma - 2018 - Journal of Bioethical Inquiry 15 (3):369-380.
    This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, (...)
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  18.  1
    Representative Claims in Healthcare: Identifying the Variety in Patient Representation.Hester M. Van de Bovenkamp & Hans Vollaard - 2018 - Journal of Bioethical Inquiry 15 (3):359-368.
    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. We conclude that variety in (...)
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  19.  2
    Bioethics and the Freedom Road. The JBI Community and the Change We Want To See.Michael A. Ashby & Bronwen Morrell - 2018 - Journal of Bioethical Inquiry 15 (2):175-179.
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  20.  5
    The Voice Is As Mighty As the Pen: Integrating Conversations Into Advance Care Planning.Kunal Bailoor, Leslie H. Kamil, Ed Goldman, Laura M. Napiewocki, Denise Winiarski, Christian J. Vercler & Andrew G. Shuman - 2018 - Journal of Bioethical Inquiry 15 (2):185-191.
    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 (...)
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  21. Moving Forward on Consent Practices in Australia.Rebekah E. McWhirter & Lisa Eckstein - 2018 - Journal of Bioethical Inquiry 15 (2):243-257.
    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 (...)
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  22.  2
    A Morally Permissible Moral Mistake? Reinterpreting a Thought Experiment as Proof of Concept.Nathan Emmerich & Bert Gordjin - 2018 - Journal of Bioethical Inquiry 15 (2):269-278.
    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 (...)
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  23.  2
    Raising Rates of Childhood Vaccination: The Trade-Off Between Coercion and Trust.Bridget Haire, Paul Komesaroff, Rose Leontini & C. Raina MacIntyre - 2018 - Journal of Bioethical Inquiry 15 (2):199-209.
    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 (...)
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  24.  2
    Family Resemblances: Human Reproductive Cloning as an Example for Reconsidering the Mutual Relationships Between Bioethics and Science Fiction.Solveig L. Hansen - 2018 - Journal of Bioethical Inquiry 15 (2):231-242.
    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 (...)
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  25.  4
    Beyond Compliance Checking: A Situated Approach to Visual Research Ethics.Caroline Lenette, Jessica R. Botfield, Katherine Boydell, Bridget Haire, Christy E. Newman & Anthony B. Zwi - 2018 - Journal of Bioethical Inquiry 15 (2):293-303.
    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 (...)
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  26.  5
    Singapore Modifies the U.K. Montgomery Test and Changes the Standard of Care Doctors Owe to Patients on Medical Advice.Sumytra Menon & Voo Teck Chuan - 2018 - Journal of Bioethical Inquiry 15 (2):181-183.
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  27.  6
    The Enduring Influence of a Dangerous Narrative: How Scientists Can Mitigate the Frankenstein Myth.Peter Nagy, Ruth Wylie, Joey Eschrich & Ed Finn - 2018 - Journal of Bioethical Inquiry 15 (2):279-292.
    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 (...)
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  28.  5
    Can the Ethical Best Practice of Shared Decision-Making Lead to Moral Distress?Trisha M. Prentice & Lynn Gillam - 2018 - Journal of Bioethical Inquiry 15 (2):259-268.
    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. (...)
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  29.  7
    Review of the Ethical Issues of a Biomarker-Based Diagnoses in the Early Stage of Alzheimer’s Disease. [REVIEW]Gwendolien Vanderschaeghe, Kris Dierickx & Rik Vandenberghe - 2018 - Journal of Bioethical Inquiry 15 (2):219-230.
    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. On the other hand, it (...)
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  30.  4
    The Beneficence of Hope: Findings From a Qualitative Study with Gout and Diabetes Patients.Isabelle Wienand, Milenko Rakic, David Shaw & Bernice Elger - 2018 - Journal of Bioethical Inquiry 15 (2):211-218.
    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 ; hope as reflective uncertainty ; hope (...)
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  31.  3
    Ethical and Legal Concerns With Nevada’s Brain Death Amendments.Greg Yanke, Mohamed Y. Rady & Joseph L. Verheijde - 2018 - Journal of Bioethical Inquiry 15 (2):193-198.
    In early 2017, Nevada amended its Uniform Determination of Death Act, 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 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. (...)
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  32.  1
    The Power of Knowledge, Responses to Change, and the Gymnastics of Causation.Michael A. Ashby & Bronwen Morrell - 2018 - Journal of Bioethical Inquiry 15 (1):1-4.
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  33.  4
    Truth Disclosure Practices of Physicians in Jordan.Saif M. Borgan, Justin Z. Amarin, Areej K. Othman, Haya H. Suradi & Yasmeen Z. Qwaider - 2018 - Journal of Bioethical Inquiry 15 (1):81-87.
    Disclosure of health information is a sensitive matter, particularly in the context of serious illness. In conservative societies—those which predominate in the developing world—direct truth disclosure undoubtedly presents an ethical conundrum to the modern physician. The aim of this study is to explore the truth disclosure practices of physicians in Jordan, a developing country. In this descriptive, cross-sectional study, 240 physicians were initially selected by stratified random sampling. The sample was drawn from four major hospitals in Amman, Jordan. A closed-ended (...)
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  34.  8
    Rearranging Deck Chairs on a Sinking Ship?Silvia Camporesi - 2018 - Journal of Bioethical Inquiry 15 (1):7-13.
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  35.  7
    Ethical Implications in Vaccine Pharmacotherapy for Treatment and Prevention of Drug of Abuse Dependence.Anna Carfora, Paola Cassandro, Alessandro Feola, Francesco La Sala, Raffaella Petrella & Renata Borriello - 2018 - Journal of Bioethical Inquiry 15 (1):45-55.
    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. Studies in humans, determining how these (...)
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  36.  4
    Disciplining Bioethics: The Debate Over Human Embryo Research.Giulia Cavaliere - 2018 - Journal of Bioethical Inquiry 15 (1):163-165.
    J. Benjamin Hurlbut’s book Experiments in Democracy: Human Embryo Research and the Politics of Bioethics is an historiographical analysis of the American debate over embryo research. It covers more than four decades of this debate and uses key actors, bodies, and events as empirical evidence for its analysis. At a first glance, it might seem like a book that tells a story, but Experiments in Democracy is much more than that. Hurlbut uses the chapters of this narrative as case studies (...)
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  37.  8
    Erratum To: AIDS Panic in the Twenty-First Century: The Tenuous Legal Status of HIV-Positive Persons in America.Richard G. Cockerill & Lance Wahlert - 2018 - Journal of Bioethical Inquiry 15 (1):169-169.
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  38.  5
    Erratum To: AIDS Panic in the Twenty-First Century: The Tenuous Legal Status of HIV-Positive Persons in America.Richard G. Cockerill & Lance Wahlert - 2018 - Journal of Bioethical Inquiry 15 (1):171-171.
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  39.  3
    Erratum To: Inhospitable Healthcare Spaces: Why Diversity Training on LGBTQIA Issues Is Not Enough.Megan A. Dean, Elizabeth Victor & Laura Guidry-Grimes - 2018 - Journal of Bioethical Inquiry 15 (1):173-173.
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  40.  24
    Knowing, Anticipating, Even Facilitating but Still Not Intending: Another Challenge to Double Effect Reasoning.S. Duckett - 2018 - Journal of Bioethical Inquiry 15 (1):33-37.
    A recent administrative law decision in Victoria, Australia, applied double effect reasoning in a novel way. Double effect reasoning has hitherto been used to legitimate treatments which may shorten life but where the intent of treatment is pain relief. The situation reviewed by the Victorian tribunal went further, supporting actions where a doctor agrees to provide pentobarbitone to a patient at some time in the future if the patient feels at that time that his pain is unbearable and he wants (...)
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  41.  8
    The Ethics of Discharging Asylum Seekers to Harm: A Case From Australia.Ryan Essex & David Isaacs - 2018 - Journal of Bioethical Inquiry 15 (1):39-44.
    In February 2016 a twelve-month-old asylum seeker, who came to be know as Baby Asha, was transferred from Nauru and hospitalized in Brisbane. This case came to public attention after Doctors refused to discharge Asha as she would have been returned to detention on Nauru. What in other circumstances would have been considered routine clinical care, quickly turned into an act of civil disobedience. This paper will discuss the ethical aspects of this case, along with its implications for clinicians and (...)
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  42.  11
    Disclosure is Inadequate as a Solution to Managing Conflicts of Interest in Human Research.Helene Jacmon - 2018 - Journal of Bioethical Inquiry 15 (1):71-80.
    Disclosure is a common response to conflicts of interest; it is intended to expose the conflict to scrutiny and enable it to be appropriately managed. For disclosure to be effective the receiver of the disclosure needs to be able to use the information to assess how the conflict may impact on their interests and then implement a suitable response. The act of disclosure also creates an expectation of self-regulation, as the person with the conflicting interests will be mindful of their (...)
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  43.  7
    Narrative Identity in Third Party Reproduction: Normative Aspects and Ethical Challenges.Natacha Salomé Lima - 2018 - Journal of Bioethical Inquiry 15 (1):57-70.
    In the last few decades, assisted reproduction has introduced new challenges to the way people conceive and build their families. While the numbers of donor-conceived individuals have increased worldwide, there are still many controversies concerning access to donor information. Is there a fundamental moral right to know one’s genetic background? What does identity in DC families mean? Is there any relationship between identity formation and disclosure of genetic origins? These questions are addressed by analysing core regulatory discourse. This analysis shows (...)
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  44.  7
    Erratum To: Ethical Considerations of Physician Career Involvement in Global Health Work: A Framework.Lawrence Chew Loh, Sae Rom Chae, Jennifer E. Heckman & Daniel S. Rhee - 2018 - Journal of Bioethical Inquiry 15 (1):167-167.
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  45.  9
    Predictive Psychiatric Genetic Testing in Minors: An Exploration of the Non-Medical Benefits.Arianna Manzini & Danya F. Vears - 2018 - Journal of Bioethical Inquiry 15 (1):111-120.
    Predictive genetic testing for susceptibility to psychiatric conditions is likely to become part of standard practice. Because the onset of most psychiatric diseases is in late adolescence or early adulthood, testing minors could lead to early identification that may prevent or delay the development of these disorders. However, due to their complex aetiology, psychiatric genetic testing does not provide the immediate medical benefits that current guidelines require for testing minors. While several authors have argued non-medical benefits may play a crucial (...)
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  46.  2
    Correction To: Predictive Psychiatric Genetic Testing in Minors: An Exploration of the Non-Medical Benefits.Arianna Manzini & Danya F. Vears - 2018 - Journal of Bioethical Inquiry 15 (1):121-121.
    The article [Title], written by [AuthorNames], was originally published electronically on the publisher’s internet portal on [date of OnlineFirst publication] without open access.
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  47.  10
    Law as Clinical Evidence: A New ConstitutiveModel of Medical Education and Decision-Making.Malcolm Parker, Lindy Willmott, Ben White, Gail Williams & Colleen Cartwright - 2018 - Journal of Bioethical Inquiry 15 (1):101-109.
    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 (...)
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  48.  3
    Beyond Trust: Plagiarism and Truth.Bart Penders - 2018 - Journal of Bioethical Inquiry 15 (1):29-32.
    Academic misconduct distorts the relationship between scientific practice and the knowledge it produces. The relationship between science and the knowledge it produces is, however, not something universally agreed upon. In this paper I will critically discuss the moral status of an act of research misconduct, namely plagiarism, in the context of different epistemological positions. While from a positivist view of science, plagiarism only influences trust in science but not the content of the scientific corpus, from a constructivist point of view (...)
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  49.  3
    A Critical View of “On TB Vaccines, Patients’ Demands, and Modern Printed Media in Times of Biomedical Uncertainties: Buenos Aires, 1920–1950”. [REVIEW]Estela B. Quiñones, Lucas Goldin, Inés M. I. Bignone & Roberto A. Diez - 2018 - Journal of Bioethical Inquiry 15 (1):19-22.
    The putative Pueyo’s vaccine was a commercial venture that obtained marketing authorization in 1946, a turbulent period of Argentine history. After a few months, health authorities withdrew financial support from the state to buy the vaccine and required patients to sign a written consent to receive that product. An independent investigation did not find any evidence of benefit in non-clinical and clinical evaluation of the putative vaccine.
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  50.  5
    Assisted Dying in Australia and Limiting Court Involvement in Withdrawal of Nutrition and Hydration.Bernadette Richards & John Coggon - 2018 - Journal of Bioethical Inquiry 15 (1):15-18.
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  51.  10
    Engendering Harm: A Critique of Sex Selection For “Family Balancing”.Arianne Shahvisi - 2018 - Journal of Bioethical Inquiry 15 (1):123-137.
    The most benign rationale for sex selection is deemed to be “family balancing.” On this view, provided the sex distribution of an existing offspring group is “unbalanced,” one may legitimately use reproductive technologies to select the sex of the next child. I present four novel concerns with granting “family balancing” as a justification for sex selection: families or family subsets should not be subject to medicalization; sex selection for “family balancing” entrenches heteronormativity, inflicting harm in at least three specific ways; (...)
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  52.  4
    Protecting Participants in Thought Experiments: The Role of the Research Ethics Committee.David Shaw - 2018 - Journal of Bioethical Inquiry 15 (1):5-6.
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  53.  10
    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?Malcolm K. Smith & Michelle Taylor-Sands - 2018 - Journal of Bioethical Inquiry 15 (1):139-153.
    The national ethical guidelines relevant to assisted reproductive technology have recently been reviewed by the National Health and Medical Research Council. 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 [2011] (...)
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  54.  6
    Mode 2 Knowledge Production in the Context of Medical Research: A Call for Further Clarifications.Hojjat Soofi - 2018 - Journal of Bioethical Inquiry 15 (1):23-27.
    The traditional researcher-driven environment of medical knowledge production is losing its dominance with the expansion of, for instance, community-based participatory or participant-led medical research. Over the past few decades, sociologists of science have debated a shift in the production of knowledge from traditional discipline-based to more socially embedded and transdisciplinary frameworks. Recently, scholars have tried to show the relevance of Mode 2 knowledge production to medical research. However, the existing literature lacks detailed clarifications on how a model of Mode 2 (...)
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  55.  3
    Minority Veterans Are More Willing to Participate in Complex Studies Compared to Non-Minorities.Leonardo Tamariz, Irene Kirolos, Fiorella Pendola, Erin N. Marcus, Olveen Carrasquillo, Jimmy Rivadeneira & Ana Palacio - 2018 - Journal of Bioethical Inquiry 15 (1):155-161.
    BackgroundMinorities are an underrepresented population in clinical trials. A potential explanation for this underrepresentation could be lack of willingness to participate. The aim of our study was to evaluate willingness to participate in different hypothetical clinical research scenarios and to evaluate the role that predictors could have on the willingness of minorities to participate in clinical research studies.MethodsWe conducted a mixed-methods study at the Miami VA Healthcare system and included primary care patients with hypertension. We measured willingness to participate as (...)
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  56.  15
    An Exploration of the Protective Effects of Investigators’ Ethical Awareness Upon Subjects of Drug Clinical Trials in China.L. Zhang, X. X. Huang & H. F. Chen - 2018 - Journal of Bioethical Inquiry 15 (1):89-100.
    Up till now, China has not enacted any legal mechanisms governing certification or supervision for ethics committees. This article analyses deficiencies in the protection of subjects in clinical drug trials under China’s current laws and regulations; it emphasizes that investigators, as practitioners who have direct contact with subjects, play significant roles in protecting and safeguarding subjects’ rights and interests. The paper compares the status quo in China in this area to that of other countries and discusses ways China might enhance (...)
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  57.  2
    Vulnerability, Harm, and Compromised Ethics Revealed by the Experiences of Queer Birthing Women in Rural Healthcare.Sylvia Burrow, Lisa Goldberg, Jennifer Searle & Megan Aston - 2018 - Journal of Bioethical Inquiry:1-14.
    Phenomenological interviews with queer women in rural Nova Scotia reveal significant forms of trauma experienced during labour and birth. Situating the accounts of participants within both phenomenological and intersectional analyses reveals harms enabled by structurally embedded heteronormative and homophobic healthcare practices and policies. Our account illustrates the breadth and depth of harm experienced and outlines how these violate core ethical principles and values in healthcare.
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