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

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

Representing Whom? U.K. Health Consumer and Patients ’ Organizations in the Policy Process
AbstractThis 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. We found that polic...
Source: Journal of Bioethical Inquiry - May 25, 2018 Category: Medical Ethics Source Type: research

Commodification and Human Interests
AbstractInMarkets 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. I argue that the case for restricting the scope o f the market do...
Source: Journal of Bioethical Inquiry - May 25, 2018 Category: Medical Ethics Source Type: research

Parental Moral Distress and Moral Schism in the Neonatal ICU
AbstractEthical 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 by barriers to...
Source: Journal of Bioethical Inquiry - May 25, 2018 Category: Medical Ethics Source Type: research

Forget Evil: Autonomy, the Physician –Patient Relationship, and the Duty to Refer
AbstractAulisio 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. Aulisio a...
Source: Journal of Bioethical Inquiry - May 22, 2018 Category: Medical Ethics Source Type: research

Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective
This article draws on a recent targeted consultation conducted by the Australian National Health and Medical Research Council to put forward strategies for supporti ng return of finding decision-making. In particular, we propose a pyramid of decision-making support: decision-making guidelines, technical and interpretative assistance, and ethical assistance for intractable “tough” cases. Each step of the pyramid involves an increasing level of regulatory inv olvement and applies to a smaller subsection of genomic research findings. Implementation of such strategies would facilitate a growing evidence base for re...
Source: Journal of Bioethical Inquiry - May 16, 2018 Category: Medical Ethics Source Type: research

The “Normalization” of Intersex Bodies and “Othering” of Intersex Identities in Australia
AbstractOnce described as hermaphrodites and later as intersex people, individuals born with intersex variations are routinely subject to so-called “normalizing” medical interventions, often in childhood. Opposition to such practices has been met by attempts to discredit critics and reasserted clinical authority over the bodies of women and men with “disorders of sex development.” However, claims of clinical consensus have been selectiv ely constructed and applied and lack evidence. Limited transparency and lack of access to justice have helped to perpetuate forced interventions. At the same time, a...
Source: Journal of Bioethical Inquiry - May 7, 2018 Category: Medical Ethics Source Type: research

Ethical and Legal Concerns With Nevada ’s Brain Death Amendments
AbstractIn early 2017, Nevada amended itsUniform 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. Neurologists have generally supported Nevada...
Source: Journal of Bioethical Inquiry - April 17, 2018 Category: Medical Ethics Source Type: research

The Beneficence of Hope: Findings from a Qualitative Study with Gout and Diabetes Patients
AbstractThis 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). The purpose of the paper is twofold. First, it aims to underline the sig...
Source: Journal of Bioethical Inquiry - April 16, 2018 Category: Medical Ethics Source Type: research

The Power of Knowledge, Responses to Change, and the Gymnastics of Causation
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - April 5, 2018 Category: Medical Ethics Source Type: research

Correction to: Predictive Psychiatric Genetic Testing in Minors: An Exploration of the Non-Medical Benefits
AbstractThe article [Title], written by [AuthorNames], was originally published electronically on the publisher ’s internet portal (currently SpringerLink) on [date of OnlineFirst publication] without open access. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - March 21, 2018 Category: Medical Ethics Source Type: research

Beyond Compliance Checking: A Situated Approach to Visual Research Ethics
AbstractVisual 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 r...
Source: Journal of Bioethical Inquiry - March 19, 2018 Category: Medical Ethics Source Type: research

The Voice Is As Mighty As the Pen: Integrating Conversations into Advance Care Planning
AbstractAdvance 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 med...
Source: Journal of Bioethical Inquiry - March 17, 2018 Category: Medical Ethics Source Type: research

Can the Ethical Best Practice of Shared Decision-Making lead to Moral Distress?
AbstractWhen 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 the ir 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. Appreciation of these dyn...
Source: Journal of Bioethical Inquiry - March 14, 2018 Category: Medical Ethics Source Type: research

Moving Forward on Consent Practices in Australia
This study initiates the required evidence base through an audit of informed consent practices for medical research in the Australian state of Tasmania to assess the need for, and current uptake of, supplementary consent strategies. Drivers for and barriers against adoption of multimedia consent practices were explored in detail through interviews with key stakeholders, inc luding researchers, HREC chairs and members, and research participants, including Indigenous participants. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - March 12, 2018 Category: Medical Ethics Source Type: research

Review of the Ethical Issues of a Biomarker-Based Diagnoses in the Early Stage of Alzheimer ’s Disease
Conclusion: Based on the results and the additional comments in the discussion, several unanswered questions emerged. Therefore, careful consideration of all these ethical issues is required before the disclosure of a biomarker-based diagnosis to the patient with mild cognitive impairment due to Alzheimer ’s disease. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - March 12, 2018 Category: Medical Ethics Source Type: research

The Enduring Influence of a Dangerous Narrative: How Scientists Can Mitigate the Frankenstein Myth
AbstractReflecting the dangers of irresponsible science and technology, Mary Shelley ’sFrankenstein 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 science. Our results yielded tw...
Source: Journal of Bioethical Inquiry - March 10, 2018 Category: Medical Ethics Source Type: research

Family Resemblances: Human Reproductive Cloning as an Example for Reconsidering the Mutual Relationships between Bioethics and Science Fiction
AbstractIn 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 bio ethics and fiction, specifically, science fiction. First, both discourses use imagination to set a scene and determine a perspective. Second, bioethics and science...
Source: Journal of Bioethical Inquiry - March 8, 2018 Category: Medical Ethics Source Type: research

A Morally Permissible Moral Mistake? Reinterpreting a Thought Experiment as Proof of Concept
AbstractThis 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 and should receive fuller consideration by those working the field. The focus of the discu...
Source: Journal of Bioethical Inquiry - March 7, 2018 Category: Medical Ethics Source Type: research

Raising Rates of Childhood Vaccination: The Trade-off Between Coercion and Trust
This article examines the impact of coercive appr oaches to childhood vaccination and raises the question of the ethical justification of health policy initiatives based on coercion. We consider the current evidence regarding childhood vaccination in Australia, the small but real risks associated with vaccination, the ethical requirement for consen t for medical procedures, and the potential social harms of targeting non-vaccinators. We conclude that the evidence does not support a move to an increasingly mandatory approach that could only be delivered through paternalistic, coercive clinical practices. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - March 1, 2018 Category: Medical Ethics Source Type: research

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?
AbstractThe national ethical guidelines relevant to assisted reproductive technology (ART) have recently been reviewed by the National Health and Medical Research Council (NHMRC). 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 ofJS and LS v Patient Review Panel (Health and Privacy) [2011] VCAT 856 provides a r...
Source: Journal of Bioethical Inquiry - February 2, 2018 Category: Medical Ethics Source Type: research

Assisted Dying in Australia and Limiting Court Involvement in Withdrawal of Nutrition and Hydration
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - January 29, 2018 Category: Medical Ethics Source Type: research

Rearranging Deck Chairs on a Sinking Ship?
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - January 26, 2018 Category: Medical Ethics Source Type: research

Engendering Harm: A Critique of Sex Selection For “Family Balancing”
AbstractThe 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 se x selection: (a) families or family subsets should not be subject to medicalization; (b) sex selection for “family balancing” entrenches heteronormativity, inflicting harm in at least three specific ways; (c) the logic of aff...
Source: Journal of Bioethical Inquiry - January 24, 2018 Category: Medical Ethics Source Type: research

The Ethics of Discharging Asylum Seekers to Harm: A Case From Australia
AbstractIn 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 the broader healthcare community. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - January 24, 2018 Category: Medical Ethics Source Type: research

Truth Disclosure Practices of Physicians in Jordan
In conclusion, most respondents opt to disclose the truth; however, the vast majority of these respondents make exceptions. Instances of non-disclosure are primarily motivated by sociocultural constructs. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - January 24, 2018 Category: Medical Ethics Source Type: research

Disciplining Bioethics: The Debate Over Human Embryo Research
AbstractJ. Benjamin Hurlbut ’s bookExperiments 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, butExperiments in Democracy is much more than that. Hurlbut uses the chapters of this narrative as case studies through which to examine practices of deliberative democracy and the role played by scientists and ethicists in the deliberative...
Source: Journal of Bioethical Inquiry - January 24, 2018 Category: Medical Ethics Source Type: research

Ethical Implications in Vaccine Pharmacotherapy for Treatment and Prevention of Drug of Abuse Dependence
AbstractDifferent 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 vaccines interact in combination with their t...
Source: Journal of Bioethical Inquiry - January 19, 2018 Category: Medical Ethics Source Type: research

Law as Clinical Evidence: A New ConstitutiveModel of Medical Education and Decision-Making
AbstractOver 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 the basis that medicine, medical law, and m...
Source: Journal of Bioethical Inquiry - January 18, 2018 Category: Medical Ethics Source Type: research

Minority Veterans Are More Willing to Participate in Complex Studies Compared to Non-minorities
ConclusionsMinorities were more likely to be willing to participate in complex studies compared to non-minorities. Low health literacy and therapeutic misconception are important mediators when considering willingness to participate in clinical research. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 19, 2017 Category: Medical Ethics Source Type: research

A Critical View of “On TB Vaccines, Patients’ Demands, and Modern Printed Media in Times of Biomedical Uncertainties: Buenos Aires, 1920–1950”
AbstractThe 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. A n independent investigation did not find any evidence of benefit in non-clinical and clinical evaluation of the putative vaccine. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 18, 2017 Category: Medical Ethics Source Type: research

Narrative Identity in Third Party Reproduction: Normative Aspects and Ethical Challenges
AbstractIn 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 (DC) 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 (ethical recommendations and codes of practice). This analysis s...
Source: Journal of Bioethical Inquiry - December 12, 2017 Category: Medical Ethics Source Type: research

Beyond Trust: Plagiarism and Truth
AbstractAcademic 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 both are at stake. Consequently, I argue that discussions of research ...
Source: Journal of Bioethical Inquiry - December 12, 2017 Category: Medical Ethics Source Type: research

An Exploration of the Protective Effects of Investigators ’ Ethical Awareness upon Subjects of Drug Clinical Trials in China
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 the protection of rights and interests of trial subjects, such as enhancing the ethical awareness of investigators through training, improving laws and regulations, and strengthening the...
Source: Journal of Bioethical Inquiry - December 11, 2017 Category: Medical Ethics Source Type: research

Predictive Psychiatric Genetic Testing in Minors: An Exploration of the Non-Medical Benefits
AbstractPredictive 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 role in favour of predictive testing for other conditions,...
Source: Journal of Bioethical Inquiry - December 11, 2017 Category: Medical Ethics Source Type: research

Disclosure is Inadequate as a Solution to Managing Conflicts of Interest in Human Research
This article discusses some of the problems of relying on disclosure as a solution to address conflicts of interest in research, including the added complexities around institutional conflicts of interest. The case of Dan Markingson illustrates these issues and highlights the vulnerable position relying on disclosure as a solution leaves research participants in. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 11, 2017 Category: Medical Ethics Source Type: research

Mode 2 Knowledge Production in the Context of Medical Research: A Call for Further Clarifications
AbstractThe 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 (Mode 1) to more socially embedded and transdisciplinary frameworks (Mode 2). 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 knowledge...
Source: Journal of Bioethical Inquiry - December 11, 2017 Category: Medical Ethics Source Type: research

Knowing, Anticipating, Even Facilitating but Still not Intending: Another Challenge to Double Effect Reasoning
AbstractA 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 (Nembutal) to a patient at some time in the future if the patient feels at that time that his pain is unbearable and he wants to end his life. The offer to provide the drug was described as a palliative treatment in that it gave reassuran...
Source: Journal of Bioethical Inquiry - December 11, 2017 Category: Medical Ethics Source Type: research

Protecting Participants in Thought Experiments: The Role of the Research Ethics Committee
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 8, 2017 Category: Medical Ethics Source Type: research

Controlling futures? Online Genetic Testing and Neurodegenerative Disease
AbstractOnline personalized genetic testing services offer accessible and convenient options for satisfying personal curiosity about health and obtaining answers about one ’s genetic provenance. They are especially attractive to healthy people who wish to learn about their future risk of disease, as Paul Mason’s (2017) case study of “Jordan” illustrates. In this response, we consider how online genetic testing services are used by people diagnosed with a common neurodegenerative disease, Parkinson’s disease, to gain a sense of certainty regarding the future. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 1, 2017 Category: Medical Ethics Source Type: research