DIY Genetic Tests: A Product of Fact or Fallacy?
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - July 31, 2020 Category: Medical Ethics Source Type: research

Is There a Gender Self-Advocacy Gap? An Empiric Investigation Into the Gender Pain Gap
AbstractThere are documented differences in the efficacy of medical treatment for pain for men and women. Women are less likely to have their pain controlled and receive less treatment than men. We are investigating one possible explanation for this gender pain gap: that there is a difference in how women and men report their pain to physicians, and so there is a difference in how physicians understand their pain. This paper describes an exploratory study into gendered attitudes towards reporting uncontrolled pain to a physician. This exploratory study provided subjects with a vignette describing a situation in which their...
Source: Journal of Bioethical Inquiry - July 29, 2020 Category: Medical Ethics Source Type: research

The Use of Advance Directives in Specialized Care Units: A Focus Group Study With Healthcare Professionals in Madrid
AbstractEight focus groups were conducted in four public hospitals in Madrid to explore healthcare professionals ’ perceptions of advance directives (ADs) in order to improve the understanding of their lack of success among physicians and patients. A purposive sample of sixty healthcare professionals discussed ADs and reasons for their infrequent use. Three main themes were identified: perceptions about thei r meaning, appraisals of their use in clinical practice, and decision-making about them. Healthcare professionals perceived a lack of clarity about their definition and implementation. There is insufficient aware...
Source: Journal of Bioethical Inquiry - July 28, 2020 Category: Medical Ethics Source Type: research

Culpable Ignorance, Professional Counselling, and Selective Abortion of Intellectual Disability
AbstractIn this paper I argue that selective abortion for disability often involves inadequate counselling on the part of reproductive medicine professionals who advise prospective parents. I claim that prenatal disability clinicians often fail in intellectual duty —they are culpably ignorant about intellectual disability (or do not disclose known facts to parents). First, I explain why a standard motivation for selective abortion is flawed. Second, I summarize recent research on parent experience with prenatal professionals. Third, I outline the notions of epistemic excellence and deficiency. Fourth, I defend culpab...
Source: Journal of Bioethical Inquiry - July 21, 2020 Category: Medical Ethics Source Type: research

From Sufficient Health to Sufficient Responsibility
AbstractThe idea of using responsibility in the allocation of healthcare resources has been criticized for, among other things, too readily abandoning people who are responsible for being very badly off. One response to this problem is that while responsibility can play a role in resource allocation, it cannot do so if it will leave those who are responsible below a “sufficiency” threshold. This paper considers first whether a view can be both distinctively sufficientarian and allow responsibility to play a role even for those who will be left with very poor health. It then draws several further distinctions th...
Source: Journal of Bioethical Inquiry - July 21, 2020 Category: Medical Ethics Source Type: research

Lessons from Corporate Influence in the Opioid Epidemic: Toward a Norm of Separation
AbstractThere is overwhelming evidence that the opioid crisis —which has cost hundreds of thousands of lives and trillions of dollars (and counting)—has been created or exacerbated by webs of influence woven by several pharmaceutical companies. These webs involve health professionals, patient advocacy groups, medical professional societies, research univer sities, teaching hospitals, public health agencies, policymakers, and legislators. Opioid companies built these webs as part of corporate strategies of influence that were designed to expand the opioid market from cancer patients to larger groups of patients ...
Source: Journal of Bioethical Inquiry - July 13, 2020 Category: Medical Ethics Source Type: research

Life Goes On
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - July 13, 2020 Category: Medical Ethics Source Type: research

Financial Conflicts of Interest are of Higher Ethical Priority than “Intellectual” Conflicts of Interest
AbstractThe primary claim of this paper is that intellectual conflicts of interest (COIs) exist but are of lower ethical priority than COIs flowing from relationships between health professionals and commercial industry characterized by financial exchange. The paper begins by defining intellectual COIs and framing them in the context of scholarship on non-financial COIs. However, the paper explains that the crucial distinction is not between financial and non-financial COIs but is rather between motivations for bias that flow from relationships and those that do not. While commitments to particular ideas or perspectives ca...
Source: Journal of Bioethical Inquiry - June 30, 2020 Category: Medical Ethics Source Type: research

Conflict of Interest in Scientific Research in China: A Socio-ethical Analysis of He Jiankui ’s Human Genome-editing Experiment
AbstractExtensive conflicts of interest (COI) at both individual and institutional levels are identifiable in scientific research and healthcare in China, as in many other parts of the world. A prominent new case from China is He Jiankui ’s experiment that produced the world’s first gene-edited babies and that raises numerous ethical, political, socio-cultural, and transnational questions. Serious financial and other COI were involved in He’s genetic adventure. Using He’s infamous experiment as a case study, this paper explo res the wider issue of financial and other COI in scientific research and h...
Source: Journal of Bioethical Inquiry - June 25, 2020 Category: Medical Ethics Source Type: research

Mitochondrial Donation: The Australian Story
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - June 25, 2020 Category: Medical Ethics Source Type: research

If the Price is Right: The Ethics and Efficiency of Market Solutions to the Organ Shortage
AbstractDue to the shortage of organs, it has been proposed that the ban on organ sales is lifted and a market-based procurement system introduced. This paper assesses four prominent proposals for how such a market could be arranged: unregulated current market, regulated current market, payment-for-consent futures market, and the family-reward futures market. These are assessed in terms of how applicable prominent concerns with organ sales are for each model. The concerns evaluated are that organ markets will crowd out altruistic donation, that consent to sell organs is invalid, that sellers will be harmed, and that commod...
Source: Journal of Bioethical Inquiry - June 15, 2020 Category: Medical Ethics Source Type: research

Re-examining the Ethics of Genetic Counselling in the Genomic Era
AbstractRespect for patient autonomy has served as the dominant ethical principle of genetic counselling, but as we move into a genomic era, it is time to actively re-examine the role that this principle plays in genetic counselling practice. In this paper, we argue that the field of genetic counselling should move away from its emphasis on patient autonomy and toward the incorporation of a more balanced set of principles that allows counsellors to offer clear guidance about how best to obtain or use genetic information. We begin with a brief history of how respect for patient autonomy gained such emphasis in the field and...
Source: Journal of Bioethical Inquiry - June 15, 2020 Category: Medical Ethics Source Type: research

John Wiltshire, Frances Burney and the doctors: Patient narratives, then and now (United Kingdom: Cambridge University Press, 2019)
AbstractThis review essay examines the emergence of the patient narrative or “pathography” in the late eighteenth and early nineteenth century in relation to the great cultural, epistemological, and ethical transformations that enabled the formation of modern medicine. John Wiltshire’s book provides an historical overview of this complex process, as well as laying the basis for a contemporary critique of some of its key assumptions. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - June 15, 2020 Category: Medical Ethics Source Type: research

Symposium Lead Essay —Conflict of Interest: Opening Up New Territories
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - June 15, 2020 Category: Medical Ethics Source Type: research

Cui Bono?
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - May 26, 2020 Category: Medical Ethics Source Type: research

Balancing Interests in Healthcare
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - May 15, 2020 Category: Medical Ethics Source Type: research

Beyond Money: Conscientious Objection in Medicine as a Conflict of Interests
AbstractConflict of interests (COIs) in medicine are typically taken to befinancial in nature: it is often assumed that a COI occurs when a healthcare practitioner ’s financial interest conflicts with patients’ interests, public health interests, or professional obligations more generally. Even when non-financial COIs are acknowledged, ethical concerns are almost exclusively reserved for financial COIs. However, the notion of “interests” cannot be redu ced to its financial component. Individuals in general, and medical professionals in particular, have different types of interests, many of which are...
Source: Journal of Bioethical Inquiry - May 12, 2020 Category: Medical Ethics Source Type: research

The Ethical Dilemma of Truth-Telling in Healthcare in China
This study sets to collect and synthesize relevant ethical evidence of the current situation in mainland China, thereby providing corresponding guidance for medical practices. This study looks into the ethical issues on the basis of the philosophy of deontology and utilitarianism and the ethical principles of veracity, autonomy, beneficence, and nonmaleficence. Chinese philosophy, context and culture are also discussed to provide some suggestions for decision-making about disclosure in a medical setting. This study holds that, in order to respect the basic rights to which critically ill patients are entitled, decisions reg...
Source: Journal of Bioethical Inquiry - May 11, 2020 Category: Medical Ethics Source Type: research

The Case for an Autonomy-Centred View of Physician-Assisted Death
AbstractMost people who defend physician-assisted death (PAD) endorse theJoint View, which holds that two conditions —autonomy and welfare—must be satisfied for PAD to be justified. In this paper, we defend anAutonomy Only view. We argue that the welfare condition is either otiose on the most plausible account of the autonomy condition or else is implausibly restrictive, particularly once we account for the broad range of reasons patients cite for desiring PAD, such as “tired of life” cases. Moreover, many of the common objections to an autonomy only view fail once we understand the extent of the au...
Source: Journal of Bioethical Inquiry - April 21, 2020 Category: Medical Ethics Source Type: research

Ethical Reasoning and Moral Distress in Social Care Among Long-Term Care Staff
This study reports on the ethical reasoning process and experiences of moral distress of long-term care staff in the provision of social care. Seven interdisciplinary focus groups were conducted with twenty front-line staff. Staff typically did not have difficulty determining the ethical decision and/or action; however, they frequently experience moral distress. To manage these experiences of moral distress in making ethical decisions, staff 1) comply with being told what to do out of fear of consequences, 2) defer decisions to family, 3) “have a meeting,” 4) socialization into and acceptance of workplace cultu...
Source: Journal of Bioethical Inquiry - April 15, 2020 Category: Medical Ethics Source Type: research

The Principle of Autonomy and Behavioural Variant Frontotemporal Dementia
AbstractBehavioural variant frontotemporal dementia (bvFTD) is characterized by an absence of obvious cognitive impairment and presence of symptoms such as disinhibition, social inappropriateness, personality changes, hyper-sexuality, and hyper-orality. Affected individuals do not feel concerned enough about their actions to be deterred from violating social norms, and their antisocial behaviours are most likely caused by the neurodegenerative processes in the frontal and anterior temporal lobes. BvFTD patients present a challenge for the traditional notion of autonomy and the medical and criminal justice systems. Antisoci...
Source: Journal of Bioethical Inquiry - March 28, 2020 Category: Medical Ethics Source Type: research

Commentary: The Voice of the People, Funded Now by Your Friendly Pharmaceutical Company
AbstractPharmaceutical industry funding has transformed much grassroots community activism on health into corporate-sponsored advocacy. This critical commentary outlines recent evidence about industry funding of patient advocacy groups, offers a commentary on the history of grassroots activism appearing in this issue of the journal, and calls for greater scrutiny of the impacts and ethics of such sponsorship. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - March 24, 2020 Category: Medical Ethics Source Type: research

Telling, Hearing, and Believing: A Critical Analysis of Narrative Bioethics
AbstractNarrative ethics taps into an inherent human need to tell our own stories centred on our own moral values and to have those stories heard and acknowledged. However, not everyone ’s words are afforded equal power. The use of narrative ethics in bioethical decision-making is problematized by a disparity in whose stories are told, whose stories are heard, and whose stories are believed. Here, I conduct an analysis of narrative ethics through a critical theory lens to show ho w entrenched patterns of narrative neglect in medicine are harming not only our capacity to make use of narrative ethics but also our capac...
Source: Journal of Bioethical Inquiry - March 16, 2020 Category: Medical Ethics Source Type: research

Status, Respect, and Stigma: A Qualitative Study of Non-financial Interests in Medicine
AbstractConflicts of interest (COI) in health and medicine have been the source of considerable public and professional debate. Much of this debate has focused on financial, rather than non-financial COI, which is a significant lacuna because non-financial COI can be just as influential as financial COI. In an effort to explore the nature and effects of non-financial, as well as financial COI, we conducted semi-structured interviews with eleven Australian medical professionals regarding their experiences of, and attitudes towards, COI. We found that this group of medical professionals saw non-financial interests —mos...
Source: Journal of Bioethical Inquiry - March 11, 2020 Category: Medical Ethics Source Type: research

After Conflicts of Interest: From Procedural Short-Cut to Ethico-Political Debate
AbstractThis paper critically examines the proliferation of conflicts of interest (COI) discourse and how the most common conceptions of COI presuppose a hierarchy of primary and secondary interests. I show that a form of professional virtue or duty is commonly employed to give the primary interest normative force. However, I argue that in the context of increasingly commercialized healthcare neither virtue nor duty can do the normative work expected of them. Furthermore, I suggest that COI discourse is symptom of rather than solution to the problems of market forces in contemporary medicine. I contend that COI, as it is c...
Source: Journal of Bioethical Inquiry - March 11, 2020 Category: Medical Ethics Source Type: research

Genome Editing for Longer Lives: The Problem of Loneliness
AbstractThe development of gene-editing technologies, such as the clustered regularly interspaced short palindromic repeats and associated Cas9 endonuclease (CRISPR/Cas9) system, coincides with a rapidly expanding knowledge of the role of genes in the human ageing process. This raises the prospect that, in addition to the treatment of genetic diseases and disorders, it may become possible to use gene-editing technologies to alter the ageing process and significantly extend the maximum human lifespan. Germline editing poses distinctive problems due to its implications for individual members of future, unborn generations. In...
Source: Journal of Bioethical Inquiry - March 9, 2020 Category: Medical Ethics Source Type: research

A Continent Aflame: Ethical Lessons From the Australian Bushfire Disaster
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - March 9, 2020 Category: Medical Ethics Source Type: research

Human Dignity and Gene Editing: Additional Support for Raposo ’s Arguments
This article offers some complementary ideas supporting her statement. In particular, four main arguments are stressed. Firstly, not only is the idea of human dignity unclear, but the idea of the human genome suffers from a general lack of concreteness, which has dramatic consequences for the debate. Secondly, it is highlighted that if we believe that the immutability of the human genome underpins human dignity, then it should be our duty to use the tools of genetic modification to reverse any accidental changes that occur in nature. Thirdly, it is showed that if the alteration of germline constitutes an attack on human di...
Source: Journal of Bioethical Inquiry - March 9, 2020 Category: Medical Ethics Source Type: research

Formulating an Ethics of Pharmaceutical Disinvestment
AbstractThere is growing interest among pharmaceutical policymakers in how to “disinvest” from subsidized medicines. This is due to both the rapidly rising costs of healthcare and the increasing use of accelerated and conditional reimbursement pathways which mean that medicines are being subsidized on the basis of less robust evidence of safety and efficacy. It is crucial that disinvestment decisions are morally sound and socially legitimate, but there is currently no framework to facilitate this. We therefore reviewed the bioethics literature in order to identify ethical principles and concepts that might be r...
Source: Journal of Bioethical Inquiry - March 4, 2020 Category: Medical Ethics Source Type: research

Lead Essay: Money, Equity and Access to Medicines
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - March 2, 2020 Category: Medical Ethics Source Type: research

“Hunting Down My Son’s Killer”: New Roles of Patients in Treatment Discovery and Ethical Uncertainty
AbstractThe past few years have witnessed several media-covered cases involving citizens actively engaging in the pursuit of experimental treatments for their medical conditions —or those of their loved ones—in the absence of established standards of therapy. This phenomenon is particularly observable in patients with rare genetic diseases, as the development of effective therapies for these disorders is hindered by the limited profitability and market value of pharmace utical research. Sociotechnical trends at the cross-section of medicine and society are facilitating the involvement of patients and creating t...
Source: Journal of Bioethical Inquiry - February 26, 2020 Category: Medical Ethics Source Type: research

Does Consumer Engagement in Health Technology Assessment Enhance or Undermine Equity?
AbstractConsumer engagement in decisions about the funding of medicines is often framed as a good in and of itself and as an activity that should be universally encouraged. A common justification for calls for consumer engagement is that it enhances equity. In this paper we systematically critique this assumption. We show that consumer engagement may undermine equity as well as enhance it and show that a simple relationship cannot be assumed but must be justified and demonstrated. In concluding, we present a number of challenges that need to be overcome in order for consumer engagement to contribute to health technology as...
Source: Journal of Bioethical Inquiry - February 14, 2020 Category: Medical Ethics Source Type: research

Deciding For When You Can ’t Decide: The Medical Treatment Planning and Decisions Act 2016 (Vic)
AbstractThe Australian state of Victoria introduced new legislation regulating medical treatment and associated decision-making in March 2018. In this article we provide an overview of the newMedical Treatment Planning and Decisions Act 2016 (Vic) and compare it to the former (now repealed)Medical Treatment Act 1988 (Vic). Most substantially, the new Act provides for persons with relevant decision-making capacity to make decisions in advance regarding their potential future medical care, to take effect in the event they themselves do not have decision-making capacity. Prima facie, the new Act enshrines autonomy as the pre-...
Source: Journal of Bioethical Inquiry - February 13, 2020 Category: Medical Ethics Source Type: research

Deliver Us From Injustice: Reforming the U.S. Healthcare System
AbstractFor the last fifty years, the United States healthcare system has done an extremely poor job of delivering healthcare in a just and fair manner. The United States holds the dubious distinction of being the only industrialized nation in the world lacking provisions to ensure universal coverage. We attempt to provide some of the reasons this dysfunctional system has persisted and show that healthcare should not be a commodity. We begin with a brief historical overview of healthcare delivery in the United States since WWII. This is followed by a critical analysis of the for-profit model including reasons to support th...
Source: Journal of Bioethical Inquiry - February 10, 2020 Category: Medical Ethics Source Type: research

New Zealand Policy on Frozen Embryo Disputes
AbstractDisputes between separated couples over whether frozen embryos can be used in an attempt to create a child create a moral dilemma for public policy. When a couple create embryos intending to parent any resulting children, New Zealand ’s current policy requires the consent of both people at every stage of the ART process. New Zealand’s Advisory Committee on Assisted Reproductive Technology has proposed a policy change that would give ex-partners involved in an embryo dispute twelve months to come to an agreement before the em bryos are destroyed. New Zealand’s current policy and the proposed policy...
Source: Journal of Bioethical Inquiry - February 10, 2020 Category: Medical Ethics Source Type: research

Pharmaceutical Ethics and Grassroots Activism in the United States: A Social History Perspective
AbstractWomen ’s health activists laid the groundwork for passage of the law that created the U.S. Food and Drug Administration in 1906. The pharmaceutical and food industries fought regulatory reforms then and continue to do so now. We examine public health activism in the Progressive Era, the postwar era and the present day. The women’s health movement began in the 1960s, and criticized both the pharmaceutical industry and the medical establishment. In the 1990s, patient advocacy groups began accepting industry funds; thousands of commercially-funded groups now dominate the advocacy landscape. As phar ma fund...
Source: Journal of Bioethical Inquiry - January 17, 2020 Category: Medical Ethics Source Type: research

The Consent Form in the Chinese CRISPR Study: In Search of Ethical Gene  Editing
AbstractThis editorial provides an ethical analysis of the consent materials and other documents relating to the recent creation and birth of twin girls who had their genes edited using CRISPR-cas9 in a controversial Chinese research study. It also examines the “draft ethical principles” published by the leader of the research study. The results of the analysis further intensify serious ethical concerns about the conduct of this study. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - January 3, 2020 Category: Medical Ethics Source Type: research

Beyond Mendelian Genetics: Anticipatory Biomedical Ethics and Policy Implications for the Use of CRISPR Together with Gene Drive in Humans
AbstractClustered regularly interspaced short palindromic repeats (CRISPR) genome editing has already reinvented the direction of genetic and stem cell research. For more complex diseases it allows scientists to simultaneously create multiple genetic changes to a single cell. Technologies for correcting multiple mutations in an in vivo system are already in development. On the surface, the advent and use of gene editing technologies is a powerful tool to reduce human suffering by eradicating complex disease that has a genetic etiology. Gene drives are CRISPR mediated alterations to genes that allow them to be passed on to ...
Source: Journal of Bioethical Inquiry - January 3, 2020 Category: Medical Ethics Source Type: research

A Response to “Fragile Objects”
AbstractThis is a critical response to “Fragile objects: A visual essay,” by Chapman et al. published in theJournal of Bioethical Inquiry (2019, 16(2): 185-189). Whilst “Fragile objects” is evocative of the author(s)’ experience in sitting with a man (“Patrick”), who had been diagnosed with Alzheimer’s, I express concern that there are unwarranted and unsubstantiated conclusions drawn about Patrick’s phenomenological experience of dementia/Alzheimer’ s. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 30, 2019 Category: Medical Ethics Source Type: research

Social Justice and the Ethical Goals of Community Engagement in Global Health Research
AbstractSocial justice has been identified as a foundational moral commitment for global health research ethics. Yet what a commitment to social justice means for community engagement in such research has not been critically examined. This paper draws on the rich social justice literature from political philosophy to explore the normative question: What should the ethical goals of community engagement be if it is to help connect global health research to social justice? Five ethical goals for community engagement are proposed that promote well-being, agency, and self-development, particularly for those considered disadvant...
Source: Journal of Bioethical Inquiry - December 20, 2019 Category: Medical Ethics Source Type: research

Developing and Implementing new TB Technologies: Key Informants ’ Perspectives on the Ethical Challenges
ConclusionsThis project helps identify some of the ethical challenges of new TB technologies. It demonstrates that investigating ethical challenges through qualitative research is one way to apprehend the difficulty of implementing new TB technologies. Addressing this difficulty will require that those in positions of power reconsider their interests in relation to disempowered communities.Policy implicationsEfforts to build consensus regarding what values should underpin the global governance of TB research, prevention, and care are essential to facilitate the ethical implementation of new TB technologies. (Source: Journa...
Source: Journal of Bioethical Inquiry - December 19, 2019 Category: Medical Ethics Source Type: research

Why High Drug Pricing Is A Problem for Research Ethics
AbstractThe high price of drugs is receiving due consideration from ethicists, policymakers, and legislators. However, much of this attention has focused on the difference between the cost of drug development and company profits and the possible laws and regulations that could limit a drug ’s price once it reaches market. By contrast, little attention has been paid to the ethical implications of high drug prices for the research subjects whose bodies were essential to the drug’s development. Indeed, the future price of a drug is routinely ignored and treated as unknowable during t he ethical evaluation of the c...
Source: Journal of Bioethical Inquiry - December 19, 2019 Category: Medical Ethics Source Type: research

Elective Impairment Minus Elective Disability: The Social Model of Disability and Body Integrity Identity Disorder
This article challenges the prima facie harms assumed to be inherent in limb amputation and argues in favour of a potential treatment option for those with BIID. To do this, it employs the social model of disability as a means to separate the concept of impairment and disability and thereby separate the acute and chronic harms of the practice of therapeutic healthy-limb amputation. It will then argue that provided sufficient measures are put in place to ensure that those with atypical bodily constructions are not disadvantaged, the chronic harms of elective amputation would cease to be. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 19, 2019 Category: Medical Ethics Source Type: research

“A Real Bucket of Worms”: Views of People Living with Dementia and Family Members on Supported Decision-Making
This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants ’ experiences with decision-...
Source: Journal of Bioethical Inquiry - December 12, 2019 Category: Medical Ethics Source Type: research

Pure Altruistic Gift and the Ethics of Transplant Medicine
AbstractThe article argues that altruistic giving based on anonymity, which is expected to promote social solidarity and block trade in human body parts, is conceptually defective and practically unproductive. It needs to be replaced by a more adequate notion which responds to the human practices of giving and receiving. The argument starts with identification of the main characteristics of the anonymous altruistic donation: social separation of the organ donor (or donor family) from the recipient, their mutual replaceability, non-obligatoriness of donation, and non-obligatoriness of reciprocation on the recipient ’s...
Source: Journal of Bioethical Inquiry - December 10, 2019 Category: Medical Ethics Source Type: research

An Issue that is not Going Away: Recent Developments in Surrogacy in South Australia
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 10, 2019 Category: Medical Ethics Source Type: research

Remember Evil: Remaining Assumptions In Autonomy-based Accounts Of Conscience Protection
Discussions of the proper role of conscience and practitioner judgement within medicine have increased of late, and with good reason. The cost of allowing practitioners the space to exercise their best judgement and act according to their conscience is significant. Misuse of such protections carve out societal space in which abuse, discrimination, abandonment of patients, and simple malpractice might occur. These concerns are offered amid a backdrop of increased societal polarization and are about a profession (or set of professions) which has historically fought for such privileged space. There is a great deal that has be...
Source: Journal of Bioethical Inquiry - December 2, 2019 Category: Medical Ethics Source Type: research

Designing Preclinical Studies in Germline Gene Editing: Scientific and Ethical Aspects
AbstractHuman germline gene editing is often debated in hypothetical terms: if it were safe and efficient, on what further conditions would it then be ethically acceptable? This paper takes another course. The key question is: how can scientists reduce uncertainty about safety and efficiency to a level that may justify initiation of first-time clinical trials? The only way to proceed is by well-designed preclinical studies. However, what kinds of investigation should preclinical studies include and what specific conditions should they satisfy in order to be considered well-designed? It is argued that multispecies and multi...
Source: Journal of Bioethical Inquiry - November 21, 2019 Category: Medical Ethics Source Type: research

Tissue vs Liquid Biopsies for Cancer Detection: Ethical Issues
AbstractCancer is the second leading cause of death in developed countries, making it a global public health problem. In this scenario, early detection is the key to successful treatment. Tissue biopsy, the current gold standard for cancer diagnosis, offers reliable results, but it is feasible only when the mass becomes detectable. On the other hand liquid biopsy, a promising experimental system, not yet implemented within clinical practice, allows early detection as its functioning relies on the analysis of body fluids. Yet, its results are less reliable if compared to those of tissue biopsy as, for instance, false positi...
Source: Journal of Bioethical Inquiry - November 15, 2019 Category: Medical Ethics Source Type: research

Picking and Choosing Among Phase I Trials
This article empirically examines how healthy volunteers evaluate and make sense of the risks of phase I clinical drug trials. This is an ethically important topic because healthy volunteers are exposed to risk but can gain no medical benefit from their trial participation. Based on in-depth qualitative interviews with 178 healthy volunteers enrolled in various clinical trials, we found that participants focus on myriad characteristics of clinical trials when assessing risk and making enrolment decisions. These factors include the short-term and long-term effects; required medical procedures; the type of trial, including i...
Source: Journal of Bioethical Inquiry - November 12, 2019 Category: Medical Ethics Source Type: research