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Journal of Bioethical Inquiry

Limor Meoded Danon
This article focuses on the dynamic between the medical policy on intersex bodies and intersex activists in Israel. Recently, in many countries changes have taken place in medical guidelines regarding intersex patients and laws that regulate medical practices and prohibit irreversible surgeries for intersex babies for cosmetic reasons and without the patient's consent. In Israel, intersex activists are limited by several factors. On the one hand, they are influenced by the achievements of intersex activism around the world but on the other, the pathologizing medical discourse and socio-medical practices, which include early diagnosis, early irreversible surgeries, and secrecy surrounding intersexed bodies, present obstacles to achieving bodily autonomy for intersex individuals and social recognition of different sex development...
September 7, 2018: Journal of Bioethical Inquiry
Katrina Karkazis, Morgan Carpenter
In April 2018, the International Association of Athletics Federations (IAAF) released new regulations placing a ceiling on women athletes' natural testosterone levels to "ensure fair and meaningful competition." The regulations revise previous ones with the same intent. They require women with higher natural levels of testosterone and androgen sensitivity who compete in a set of "restricted" events to lower their testosterone levels to below a designated threshold. If they do not lower their testosterone, women may compete in the male category, in an intersex category, at the national level, or in unrestricted events...
August 16, 2018: Journal of Bioethical Inquiry
Mona Saleh, Phoebe Friesen, Veronica Ades
According to the World Health Organization, female genital cutting affects millions of girls and women worldwide, particularly on the African continent and in the Middle East. This paper presents a plausible, albeit hypothetical, clinical vignette and then explores the legal landscape as well as the ethical landscape physicians should use to evaluate the adult patient who requests re-infibulation. The principles of non-maleficence, beneficence, justice, and autonomy are considered for guidance, and physician conscientious objection to this procedure is discussed as well...
August 16, 2018: Journal of Bioethical Inquiry
Jacquelyne Luce
In this article, I draw on research carried out in Europe, primarily in Germany, on patients' and scientists' perspectives on mitochondrial replacement techniques (MRTs) 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 representation in health governance initiatives take shape...
July 31, 2018: Journal of Bioethical Inquiry
Silke Schicktanz, Nitzan Rimon-Zarfaty, Aviad Raz, Karin Jongsma
This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups (POs) 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...
July 31, 2018: Journal of Bioethical Inquiry
Karin Jongsma, Nitzan Rimon-Zarfaty, Aviad Raz, Silke Schicktanz
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 (Western) bioethics...
July 16, 2018: 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
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
Michael A Ashby, Bronwen Morrell
No abstract text is available yet for this article.
June 2018: Journal of Bioethical Inquiry
Sumytra Menon, Voo Teck Chuan
No abstract text is available yet for this article.
June 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...
June 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)...
June 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...
June 2018: Journal of Bioethical Inquiry
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