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Journal of Bioethical Inquiry

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https://www.readbyqxmd.com/read/30402734/vulnerability-harm-and-compromised-ethics-revealed-by-the-experiences-of-queer-birthing-women-in-rural-healthcare
#1
Sylvia Burrow, Lisa Goldberg, Jennifer Searle, Megan Aston
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.
November 6, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/30397854/should-gender-reassignment-surgery-be-publicly-funded
#2
Johann J Go
Transgender people have among the highest rates of suicide attempts of any group in society, driven strongly by the perception that they do not belong in the sex of their physical body. Gender reassignment surgery (GRS) is a procedure that can change the transgender person's physical body to accord with their gender identity. The procedure raises important ethical and distributive justice concerns, given the controversy of whether it is a cosmetic or medical procedure and the economic costs associated with performing the procedure...
November 5, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/30367362/intersexual-births-the-epistemology-of-sex-and-ethics-of-sex-assignment
#3
Matteo Cresti, Elena Nave, Roberto Lala
This article aims to analyse a possible manner of approaching the birth of intersexual children. We start out by summing up what intersexuality is and how it is faced in the dominant clinical practice (the "treatment paradigm"). We then argue against this paradigm, in favour of a postponement of genital surgery. In the second part of this paper, we take into consideration the general question of whether only two existing sexes are to be recognized, arguing in favour of an expansion of sex categories...
October 26, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/30341676/-i-don-t-see-that-as-a-medical-problem-clinicians-attitudes-and-responses-to-requests-for-cosmetic-genital-surgery-by-adolescents
#4
Merle Spriggs, Lynn Gillam
Labiaplasty is a form of genital surgery to reduce large or protruding labia minora. Internationally, the rates of this surgery among women and girls is increasing and is viewed as a worrying trend. Currently, the main clinical strategy is to reassure adolescents that they are normal by talking about the variation of labia size and appearance and showing pictures demonstrating the wide range of normal female genital appearance. For the most part, policy documents recommend against labiaplasty in adolescents, claiming that it is medically non-essential surgery...
October 19, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/30280296/lgbt-individuals-perceptions-of-healthcare-services-in-turkey-a-cross-sectional-qualitative-study
#5
Şükrü Keleş, Mustafa Volkan Kavas, Neyyire Yasemin Yalım
When accessing healthcare services, LGBT+ individuals are often exposed to segregating and marginalizing discourses. Knowledge about how such experiences are reflected in the moral world of LGBT+ individuals living in Turkey is limited. This study examined LGBT+ individuals' lived experiences when utilizing healthcare services. The findings are discussed in terms of moral discourses related to LGBT+ individuals' gender identity and sexual orientation. A qualitative field study was conducted using semi-structured interviews with fifty-five LGBT+ individuals from Turkish cities who were in contact with various non-governmental organizations that conduct studies on gender identity and sexual orientation...
October 2, 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/30194675/intersex-activists-in-israel-their-achievements-and-the-obstacles-they-face
#6
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
https://www.readbyqxmd.com/read/30341675/embedded-journalists-or-empirical-critics-the-nature-of-the-gaze-in-bioethics
#7
EDITORIAL
Michael A Ashby, Bronwen Morrell
ᅟ.
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/30066236/mitochondrial-replacement-techniques-examining-collective-representation-in-emerging-technologies-governance
#8
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...
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/30066235/patient-representation-and-advocacy-for-alzheimer-disease-in-germany-and-israel
#9
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...
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/30014364/one-for-all-all-for-one-collective-representation-in-healthcare-policy
#10
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...
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29980920/medicolegal-complications-of-apnoea-testing-for-determination-of-brain-death
#11
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.
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29978274/social-media-the-unnamed-plaintiff
#12
Bernadette J Richards
No abstract text is available yet for this article.
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29971693/are-me-cfs-patient-organizations-militant-patient-protest-in-a-medical-controversy
#13
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...
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29968019/attitudes-towards-the-donation-of-human-embryos-for-stem-cell-research-among-chinese-ivf-patients-and-students
#14
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...
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29968018/ethical-issues-of-using-crispr-technologies-for-research-on-military-enhancement
#15
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...
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29968017/legislating-patient-representation-a-comparison-between-austrian-and-german-regulations-on-self-help-organizations-as-patient-representatives
#16
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...
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29802590/representing-whom-u-k-health-consumer-and-patients-organizations-in-the-policy-process
#17
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...
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29802589/commodification-and-human-interests
#18
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...
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29802588/parental-moral-distress-and-moral-schism-in-the-neonatal-icu
#19
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...
September 2018: Journal of Bioethical Inquiry
https://www.readbyqxmd.com/read/29790018/forget-evil-autonomy-the-physician-patient-relationship-and-the-duty-to-refer
#20
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...
September 2018: Journal of Bioethical Inquiry
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