The Boundaries of Embryo Research: Extending the Fourteen-Day Rule
AbstractThe disciplines of ethics, science, and the law often conflict when it comes to determining the limits and boundaries of embryo research. Under current Australian law and regulations, and in various other jurisdictions, research conducted on the embryo in vitro is permitted up until day fourteen, after which, the embryo must be destroyed. Reproductive technology and associated research is rapidly advancing at a rate that contests current societal and ethical limits surrounding the treatment of the embryo. This has brought about the question of the adequacy of the fourteen-day rule and whether it is necessary for it...
Source: Journal of Bioethical Inquiry - January 11, 2019 Category: Medical Ethics Source Type: research

New Zealand District Health Boards ’ Open Disclosure Policies: A Qualitative Review
Conclusion: This review has identified significant unwarranted heterogeneity and important gaps in open disclosure documents in New Zealand which urgently needs to be addressed. Open disclosure policies which are both flexible and specific should enhance the likelihood that injured patients ’ needs will be met. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - January 7, 2019 Category: Medical Ethics Source Type: research

Accounting for the Moral Significance of Technology: Revisiting the Case of Non-Medical Sex Selection
This article explores the moral significance of technology, reviewing a microfluidic chip for sperm sorting and its use for non-medical sex selection. I explore how a specific material setting of this new iteration of pre-pregnancy sex selection technology —with a promised low cost, non-invasive nature and possibility to use at home—fosters new and exacerbates existing ethical concerns. I compare this new technology with the existing sex selection methods of sperm sorting and Prenatal Genetic Diagnosis. Current ethical and political debates on eme rging technologies predominantly focus on the quantifiable risk-...
Source: Journal of Bioethical Inquiry - December 27, 2018 Category: Medical Ethics Source Type: research

Medicine is Patriarchal, But Alternative Medicine is Not the Answer
AbstractWomen are over-represented within alternative medicine, both as consumers and as service providers. In this paper, I show that the appeal of alternative medicine to women relates to the neglect of women ’s health needs within scientific medicine. This is concerning because alternative medicine is severely limited in its therapeutic effects; therefore, those who choose alternative therapies are liable to experience inadequate healthcare. I argue that while many patients seek greater autonomy in al ternative medicine, the absence of an evidence base and plausible mechanisms of action leaves patients unable to r...
Source: Journal of Bioethical Inquiry - December 20, 2018 Category: Medical Ethics Source Type: research

The Looping Effects of Enhancement Technologies
AbstractLibertarians often portray the decision to use enhancement technologies purely as a matter of individual choice, affecting the person who uses them but no one else. Yet individual choices often add up to large social changes that profoundly affect the lives of other people, effectively pushing individual choices in a particular direction. It seems plausible that self-reinforcing loops such as those that have driven the adoption of technologies like cars and air-conditioners might also play a role in the adoption of enhancement technologies, effectively exerting pressure on people to use a technology that they might...
Source: Journal of Bioethical Inquiry - December 19, 2018 Category: Medical Ethics Source Type: research

On Replacement Body Parts
AbstractTechnological advances are making devices that functionally replace body parts —artificial organs and limbs—more widely used, and more capable of providing patients with lives that are close to “normal.” Some of the ethical issues this is likely to raise relate to how such prostheses are conceptualized. Prostheses are ambiguous between being inanimate objects and shari ng in the status of human bodies—which already have an ambiguous status, as both objects and subjects. At the same time, the possibility of replacing body parts with artificial objects puts pressure on the normative stat...
Source: Journal of Bioethical Inquiry - December 18, 2018 Category: Medical Ethics Source Type: research

Human Enhancement: Enhancing Health or Harnessing Happiness?
This article focuses on some conceptual issues with HE that have important ethical implications. In particular it scrutinizes how the concept of human enhancement relates to and challenges the concept of health. In order to do so, it addresses three specific questions: Q1. What do conceptions of HE say about health? Q2. Does HE challenge traditional conceptions of health? Q3. Do concepts of health set limits to or direct  HE? Addressing Q1 reveals that HE tends to frame and form our conception of health. Thereby it challenges traditional conceptions of health (Q2). Accordingly, health does not provide strong sources f...
Source: Journal of Bioethical Inquiry - December 17, 2018 Category: Medical Ethics Source Type: research

To the Barricades or the Blackboard: Bioethical Activism and the “Stance of Neutrality”
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 17, 2018 Category: Medical Ethics Source Type: research

Medium-Range Narratives as a Complementary Tool to Principle-Based Prioritization in Sweden: Test Case “ADHD”
We present our suggestion in the particular case of having to choose between treatment interventions for attention deficit hyperactivity disorder (ADHD) and treatment interventions for other conditions or diseases, under circumstances of scarcity. In order to arrive at our model, we compare two distinct ethical approaches: a generalist (principles) approach and a particularist (narratives) approach. Our focus is on Sweden, because in Sweden prioritization in healthcare is uniquely governmentally regulated by the “ethics platform.” We will present a (fictional) scenario to analyse the strengths and weaknesses of...
Source: Journal of Bioethical Inquiry - December 5, 2018 Category: Medical Ethics Source Type: research

What Is the Good of It —Ethical Controls of Human Subject Health Research?
AbstractThe term “ethics” covers a multitude of virtues and possibly some sins where ethical perspectives differ. Given the diversity of ethical philosophies there is a question about what common ground can, or should, inform health research ethics. At a minimum it must be consistent with the law. Beyond that, e thics embraces a variety of possible approaches. This raises the question—what criteria are applied in determining the appropriate approach and what standards by way of quality control are applied to its decisional application by ethics committees or other authorities exercising responsibility in ...
Source: Journal of Bioethical Inquiry - December 5, 2018 Category: Medical Ethics Source Type: research

Bioethics and the Myth of Neutrality
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - November 28, 2018 Category: Medical Ethics Source Type: research

Correction to: Vulnerability, Harm, and Compromised Ethics Revealed by the Experiences of Queer Birthing Women in Rural Healthcare
The following Acknowledgments were omitted in the original publication. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - November 28, 2018 Category: Medical Ethics Source Type: research

Vulnerability, Harm, and Compromised Ethics Revealed by the Experiences of Queer Birthing Women in Rural Healthcare
AbstractPhenomenological 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. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - November 6, 2018 Category: Medical Ethics Source Type: research

Should Gender Reassignment Surgery be Publicly Funded?
AbstractTransgender 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. This paper argues that there is a strong case for funding GRS as a matter of ...
Source: Journal of Bioethical Inquiry - November 5, 2018 Category: Medical Ethics Source Type: research

Intersexual Births: The Epistemology of Sex and Ethics of Sex Assignment
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 categori es. In the third part, we illustrate the reasons supporting provisional sex attribution: the child’s best int...
Source: Journal of Bioethical Inquiry - October 26, 2018 Category: Medical Ethics Source Type: research

“I Don’t See That as a Medical Problem”: Clinicians’ Attitudes and Responses to Requests for Cosmetic Genital Surgery by Adolescents
AbstractLabiaplasty 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. In this paper, we contrast findings from our interviews...
Source: Journal of Bioethical Inquiry - October 19, 2018 Category: Medical Ethics Source Type: research

Embedded Journalists or Empirical Critics? The Nature of The “Gaze” in Bioethics
Abstractᅟ (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - October 19, 2018 Category: Medical Ethics Source Type: research

LGBT+ Individuals ’ Perceptions of Healthcare Services in Turkey: A Cross-sectional Qualitative Study
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 Tu rkish cities who were in contact with various non-governmental organizations that conduct studies on gender identity and sexual orientation. A questionnaire was administered with items on participants’ demographic information, experiences, behavioural patterns, and knowledge r...
Source: Journal of Bioethical Inquiry - October 2, 2018 Category: Medical Ethics Source Type: research

Intersex Activists in Israel: Their Achievements and the Obstacles They Face
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 inclu...
Source: Journal of Bioethical Inquiry - September 7, 2018 Category: Medical Ethics Source Type: research

On Female Genital Cutting: Factors to be Considered When Confronted With a Request to Re-infibulate
AbstractAccording 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. Analyses of law and predominant principles o...
Source: Journal of Bioethical Inquiry - August 16, 2018 Category: Medical Ethics Source Type: research

Impossible “Choices”: The Inherent Harms of Regulating Women’s Testosterone in Sport
AbstractIn 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 testostero ne 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 nationa...
Source: Journal of Bioethical Inquiry - August 16, 2018 Category: Medical Ethics Source Type: research

On Female Genital Cutting: Factors to be Considered When Confronted With a Request to Re-infibulate
AbstractAccording 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. Analyses of law and predominant principles o...
Source: Journal of Bioethical Inquiry - August 16, 2018 Category: Medical Ethics Source Type: research

Impossible “Choices”: The Inherent Harms of Regulating Women’s Testosterone in Sport
AbstractIn 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 testostero ne 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 nationa...
Source: Journal of Bioethical Inquiry - August 16, 2018 Category: Medical Ethics Source Type: research

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel
AbstractThis 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. We identified a heterogeneous landscape, with the only Is...
Source: Journal of Bioethical Inquiry - July 31, 2018 Category: Medical Ethics Source Type: research

Mitochondrial Replacement Techniques
AbstractIn 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 anal yses, 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 repr...
Source: Journal of Bioethical Inquiry - July 31, 2018 Category: Medical Ethics Source Type: research

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel
AbstractThis 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. We identified a heterogeneous landscape, with the only Is...
Source: Journal of Bioethical Inquiry - July 31, 2018 Category: Medical Ethics Source Type: research

Mitochondrial Replacement Techniques
AbstractIn 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 anal yses, 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 repr...
Source: Journal of Bioethical Inquiry - July 31, 2018 Category: Medical Ethics Source Type: research

One For All, All For One? Collective Representation in Healthcare Policy
AbstractHealthcare 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. This symposium, entitled: “Collective Representation in H...
Source: Journal of Bioethical Inquiry - July 16, 2018 Category: Medical Ethics Source Type: research

Why Do Medical Professional Regulators Dismiss Most Complaints From Members of the Public? Regulatory Illiteracy, Epistemic Injustice, and Symbolic Power
AbstractDrawing on an analysis of complaint files that we conducted for the Irish Medical Council (Madden and O ’Donovan2015), 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 seriousne ss of regulators is poorly understood by the gener...
Source: Journal of Bioethical Inquiry - July 10, 2018 Category: Medical Ethics Source Type: research

Medicolegal Complications of Apnoea Testing for Determination of Brain Death
AbstractRecently, 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. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - July 6, 2018 Category: Medical Ethics Source Type: research

Social Media: The Unnamed Plaintiff
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - July 5, 2018 Category: Medical Ethics Source Type: research

Are ME/CFS Patient Organizations “Militant”?
AbstractMyalgic 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 op inion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim of “militant&r...
Source: Journal of Bioethical Inquiry - July 3, 2018 Category: Medical Ethics Source Type: research

Ethical Issues of Using CRISPR Technologies for Research on Military Enhancement
AbstractThis 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 endea...
Source: Journal of Bioethical Inquiry - July 2, 2018 Category: Medical Ethics Source Type: research

Attitudes Towards the Donation of Human Embryos for Stem Cell Research Among Chinese IVF Patients and Students
This article examines the viewpoints on the donation of embryos for stem cell research among IVF patients and students in China. Research into the perceptions of patients is based on in-depth interviews with IVF patients and IVF clinicians. Research into the attitudes of students is based on a quantitative survey study (n=427). The empirical findings in this paper indicate that perceptions of the donation of human embryos for stem cell research in China are far more diverse and complex than has commonly been suggested. Claims that ethical concerns regarding the donation and use of embryos and oocytes for stem cell research...
Source: Journal of Bioethical Inquiry - July 2, 2018 Category: Medical Ethics Source Type: research

Legislating Patient Representation: A Comparison Between Austrian and German Regulations on Self-Help Organizations as Patient Representatives
AbstractGovernments 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 organ izations (SHOs), 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 discussion on the role of ...
Source: Journal of Bioethical Inquiry - July 2, 2018 Category: Medical Ethics Source Type: research

Attitudes Towards the Donation of Human Embryos for Stem Cell Research Among Chinese IVF Patients and Students
This article examines the viewpoints on the donation of embryos for stem cell research among IVF patients and students in China. Research into the perceptions of patients is based on in-depth interviews with IVF patients and IVF clinicians. Research into the attitudes of students is based on a quantitative survey study (n=427). The empirical findings in this paper indicate that perceptions of the donation of human embryos for stem cell research in China are far more diverse and complex than has commonly been suggested. Claims that ethical concerns regarding the donation and use of embryos and oocytes for stem cell research...
Source: Journal of Bioethical Inquiry - July 2, 2018 Category: Medical Ethics Source Type: research

Ethical Issues of Using CRISPR Technologies for Research on Military Enhancement
AbstractThis 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 endea...
Source: Journal of Bioethical Inquiry - July 2, 2018 Category: Medical Ethics Source Type: research

Singapore Modifies the U.K. Montgomery Test and Changes the Standard of Care Doctors Owe to Patients on Medical Advice
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - July 2, 2018 Category: Medical Ethics Source Type: research

Bioethics and the Freedom Road. The JBI Community and the Change We Want To See
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - July 2, 2018 Category: Medical Ethics Source Type: research

Legislating Patient Representation: A Comparison Between Austrian and German Regulations on Self-Help Organizations as Patient Representatives
AbstractGovernments 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 organ izations (SHOs), 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 discussion on the role of ...
Source: Journal of Bioethical Inquiry - July 2, 2018 Category: Medical Ethics Source Type: research

Representative Claims in Healthcare: Identifying the Variety in Patient Representation
AbstractIn 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 forms of representation could help do ju...
Source: Journal of Bioethical Inquiry - June 7, 2018 Category: Medical Ethics Source Type: research

Responsibility as an Obstacle to Good Policy: The Case of Lifestyle Related Disease
AbstractThere 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. I claim that these two facts —the fact that we cannot be highly confident that anyone is morally res...
Source: Journal of Bioethical Inquiry - June 6, 2018 Category: Medical Ethics Source Type: research