Bioethics Literature Research Articles

Vulnerability: An integrative bioethics review and a proposed taxonomy.

Vulnerability is a concept frequently encountered in the bioethical literature, particularly in the context of research ethics. It can be said that the usage of the concept expanded in the 2000s and started to be used in many new contexts in the literature. However, there appears to be no systematic review that examines the definition of the concept of vulnerability. The rationale for this study constitutes the questions regarding how vulnerability is defined and which components are used to define the concept of vulnerability in the bioethics literature. The integrative review method was conducted to reach various definitions of the concept of vulnerability in bioethics. Whittemore and Knafl's revised framework for integrative reviews guided the analysis. 'Vulnerability' and 'vulnerable' keywords, intercrossing with the words 'bioethics' and 'medical ethics', were searched in three different databases (PubMed, Web of Science and Scopus). Collected data were analysed thematically and a taxonomy was developed. A total of 1287 studies obtained through search were reduced to 123 that kept the definition of vulnerability. As a result of the review, a comprehensive taxonomy of vulnerability has been proposed. The proposed taxonomy of vulnerability has two categories, ontological and circumstantial, with three subcategories each, which might provide a multidimensional perspective. Publication dates, origins and contexts of included publications were discussed. Specifications of the term vulnerability and components of its definition and factors that constitute these components provided from the view were evaluated and also discussed. The proposed taxonomy provides a useful classification for assessing vulnerability in bioethics. It is hoped that the taxonomy we put forward as a result of the review will increase awareness on the issue and also take into account the factors that create vulnerability in the context of research, healthcare and nursing care policies. The review was conducted in accord with ethical and scientific standards.

Adverse Health and Psychosocial Repercussions in Retirees from Sports Involving Head Trauma: Looking at the Sport of Boxing

Academic scholarship has steadily reported unfavourable clinical findings on the sport of boxing, and national medical bodies have issued calls for restrictions on the sport. Yet, the positions taken on boxing by medical bodies have been subject to serious discussions. Beyond the medical and legal writings, there is also literature referring to the social and cultural features of boxing as ethically significant. However, what is missing in the bioethical literature is an understanding of the boxers themselves. This is apart from their brain injuries, the debates about the degenerative brain disease known as chronic traumatic encephalopathy (CTE), and related issues about the disease. This article argues that the lives of boxers, their relationships, their careers, and their futures, also requires its own research, particularly in telling stories about their lives, and those lives and futures which boxing affects. The article uses two approaches. First, to imagine a more enduring “whole of life viewpoint” by using an extended future timeframe. Second, to consider perspectives of a person’s significant others. After reviewing the boxing literature, the article discusses social settings and then explores the hidden social relationships in life after boxing. With these longer time and close relationship viewpoints, three important themes emerge: family and kinship; age, stage and career; and the effects of boxing fatalities. These analyses are used in conjunction with relevant clinical findings which complement the telling of stories to improve medical information, and engages professional and public empathy for people’s experience of illness and difficulties in coping.

Shared Decision-Making in Palliative Care: A Maternalistic Approach.

During goals of care conversations, palliative care clinicians help patients and families determine priorities of care and align medical care with those priorities. The style and methods of communicating with families and negotiating a care plan can range from paternalistic to entirely patient driven. In this paper, we describe a case in which the palliative care clinician approached decision-making using a paradigm that is intuitive to many clinicians and which seems conceptually sound, but which has not been fully explored in the bioethics literature. This paradigm, termed maternalism, allows the clinician to direct decision-making within a relationship such that best interests and autonomy are mutually reinforced, thus reflecting relational autonomy as opposed to individual autonomy. We explore whether this method is appropriate in this case and explain how it captures significant ethical features of the case that might be missed by other approaches.

Ethical, Legal, and Social Issues (ELSI) in Clinical Genetics Research.

ELSI (Ethical, Legal, and Social Issues) is a widely used acronym in the bioethics literature that encompasses a broad range of research examining the various impacts of science and technology on society. In Canada, GE3LS (Genetics, Ethical, Economic, Environmental, Legal, Social issues) is the term used to describe ELSI studies in the context of genetics and genomics research. It is intentionally more expansive in that GE3LS explicitly brings economic and environmental issues under its purview. ELSI/GE3LS research is increasingly relevant in recent years as there has been a greater emphasis on "translational research" that moves genomic discoveries from the bench to the clinic. The purpose of this chapter is to outline a range of ELSI-related work that might be conducted as part of a large scale genetics or genomics research project, and to provide some practical insights on how a scientific research team might incorporate a strong and effective ELSI program within its broader research mandate. We begin by describing the historical context of ELSI research and the development of GE3LS research in the Canadian context. We then illustrate how some ELSI research might unfold by outlining a variety of GE3LS research questions or content domains and the methodologies that might be employed in studying them. We conclude with some practical suggestions about how to build an effective ELSI/GE3LS team and focus within a broader scientific research program.

Preferential Option for the Poor and Critical Race Theory in Bioethics

The preferential option for the poor is a concept and set of ideas in Catholic social teaching that is highly relevant to bioethics scholarship and practice. The option for the poor is mentioned frequently in the bioethics literature but with little specification of its history and implications for ethical and theological analysis. This article examines the origins and implications of the preferential option; compares it to critical race theory, which dominates current debates about discrimination and oppression; and proposes a set of principles for further application in bioethical scholarship and discussion.

Rationing health and social goods during pandemics: Guidance for Ghanaian decision makers

Healthcare rationing during pandemics has been widely discussed in global bioethics literature. However, existing scenarios and analyses have focused on high income countries, except for very few disease areas such as HIV treatment where some analyses related to African countries exist. We argue that the lack of scholastic discourse, and by extension, professional and democratic engagement on the subject constitute an unacceptable ethical omission. Not only have African governments failed to develop robust ethical plans for pandemics, ethicists in this region have been unable to ignite public discourse on rationing. Therefore, we aim to initiate a debate on how rationing health and social goods could be done ethically in Ghana during the current and future pandemics. The paper discusses and critiques some moral considerations (utilitarian, equity, equal worth, urgent need, and the prioritarian principles) for rationing and their relevance in the Ghanaian context. This contribution may facilitate ethical decision-making during the current (COVID-19) pandemic - in Ghana and other African settings where hardly any rationing guidelines exist

Conscientious participants and the ethical dimensions of physician support for legalised voluntary assisted dying

The Australian state of Victoria legalised voluntary assisted dying (VAD) in June 2019. Like most jurisdictions with legalised VAD, the Victorian law constructs physicians as the only legal providers of...

'It's not worse than eating them': the limits of analogy in bioethics.

Bioethicists often defend novel practices by drawing analogies withpractices thatwe are already familiar with andcurrently tolerate. Ifsome novel practice is less bad than some widely-accepted practice, then (it is argued) we cannot rightly reject it. Using the bioethics literature on xenotransplantation and interspecies blastocyst complementation as a case study, I show how this style of argument can go awry. The key problem is that our moral intuitions about familiar practices can be distorted by their seeming normality. When considering the ethics of emerging technologies and novel practices, we should remain open to the possibility that our moral views about familiar practices are mistaken.

Ethical Principles in the Face of the Main Chromosomal Pathologies

Belonging to a health profession requires an understanding of the ethical problems faced by its members. Chromosomal pathologies are very rare among live births; which does not give them priority for public health in developing countries, however these pathologies exist and can affect any family. The present study first describes patients with chromosomal pathologies in the population of western Algeria. The second step proposes to think about applying ethical principles to the practice of cytogenetics. We carried out a study by a triangulation of the sources of information: The study of files, the prospection in the international bioethical literature and the research in the authorized texts as well as the international instruments. This type of approach makes it possible to reflect on the border between ethics and law. Ethical reflection on this subject therefore appears essential to attract attention to these patients in order to give them a better place in our society.

The somatic mode: doing good in targeted cancer therapy

This article explores the ethical challenges following the use of genetic information in experimental cancer treatment. In Danish healthcare, current ethical debates on the wider use of genetic information are highly focused on the heredity of genetic information. This focus accords with the international bioethical literature and the established practices of assessing inherited risks for cancer. Drawing on Pols’ (2003. “Enforcing Rights or Improving Care? The Interference of two Modes of Doing Good in Mental Health Care.” Sociology of Health & Illness 25 (4): 320–347. doi:10.1111/1467-9566.00349) concept of modes of doing good, we show that this has led to a certain understanding of the ethical challenges regarding genetic information – an understanding we term the germline mode. We argue that the germline mode overlooks crucial dilemmas facing healthcare professionals who use genetic information to target treatment directly at patients’ somatic mutations, i.e. alterations in the DNA occurring only in the tumor. In this article, we develop the concept of the somatic mode and explore the ethical challenges that emerge when genetic information takes a somatic turn.

The Ethical Limits of Children's Participation in Clinical Research.

This essay reflects on arguments by Paul Ramsey, in The Patient as Person: Explorations in Medical Ethics (1970) and elsewhere, that continue to challenge policy-makers and those doing clinical and translational research involving children. Ramsey argued that parents cannot morally authorize their child's participation in research unless the research is designed to benefit the child. He acknowledged that abiding by this position could have adverse impacts on improving child health, and he concluded, in a 1976 Hastings Center Report piece, that researchers must "sin bravely." Many philosophers and theologians, including Richard McCormick, have argued against Ramsey. The Ramsey-McCormick debate played out in the bioethics literature and, by invitation, at the deliberations of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, which was tasked with developing an ethics framework and policies for human subjects protections. Although in its final recommendations, the commission sided with McCormick, the strict limitations on risks and harms to which a child can be exposed were clearly influenced by Ramsey.

Minds, brains, and hearts: an empirical study on pluralism concerning death determination.

Several authors in bioethics literature have expressed the view that a whole brain conception of death is philosophically indefensible. If they are right, what are the alternatives? Some authors have suggested that we should go back to the old cardiopulmonary criterion of death and abandon the so-called Dead Donor Rule. Others argue for a pluralist solution. For example, Robert Veatch has defended a view that competent persons should be free to decide which criterion of death should be used to determine their death. However, there is very little data on people’s preferences about death determination criteria. We conducted online vignette-based survey with Latvian participants (N = 1416). The data suggest that the pluralist solution fits best with the way our study participants think about death determination—widely differing preferences concerning death determination criteria were observed. Namely, most participants choose one of the three criteria discussed in the literature: whole brain, higher brain, and cardiopulmonary. Interestingly, our data also indicate that study participants tend to prefer less restrictive criteria for determination of their own deaths than for determination of deaths of their closest relatives. Finally, the preferences observed in our sample are largely in accord with the Dead Donor Rule for organ procurement for transplantation.Electronic supplementary materialThe online version of this article (10.1007/s40592-020-00114-0) contains supplementary material, which is available to authorized users.

Systematic reviews of empirical literature on bioethical topics: Results from a meta-review.

BackgroundIn bioethics, especially nursing ethics, systematic reviews are increasingly popular. The overall aim of a systematic review is to provide an overview of the published discussions on a specific topic. While a meta-review on systematic reviews on normative bioethical literature has already been performed, there is no equivalent for systematic reviews of empirical literature on ethical topics.ObjectiveThis meta-review aims to present the general trends and characteristics of systematic reviews of empirical bioethical literature and to evaluate their reporting quality.Research designLiterature search was performed on PubMed and Google Scholar. Qualitative content analysis and quantitative approaches were used to evaluate the systematic reviews. Characteristics of systematic reviews were extracted and quantitatively analyzed. The reporting quality was measured using an adapted PRISMA checklist.FindingsSeventy-six reviews were selected for analysis. Most reviews came from the field of nursing (next to bioethics and medicine). Selected systematic reviews investigated issues related to clinical ethics (50%), followed by research ethics (36%) and public health ethics or organizational ethics (14%). In all, 72% of the systematic reviews included authors’ ethical reflections on the findings and 59% provided ethical recommendations. Despite the heterogeneous reporting of the reviews, reviews using PRISMA tended to score better regarding reporting quality.DiscussionThe heterogeneity currently observed is due both to the interdisciplinary nature of nursing ethics and bioethics, and to the emerging nature of systematic review methods in these fields. These results confirm the findings of our previous review of systematic reviews on normative literature, thereby highlighting a recurring methodological gap in systematic reviews of bioethical literature. This also indicates the need to develop more robust methodological standards.ConclusionThrough its extensive overview of the characteristics of systematic reviews of empirical literature on ethical topics, this meta-review is expected to inform further discussions on minimal standards and reporting guidelines.

Formulating an Ethics of Pharmaceutical Disinvestment.

There 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 relevant to pharmaceutical disinvestment decisions. This revealed a number of key ethical considerations-both procedural and substantive-that need to be considered when making pharmaceutical disinvestment decisions. These principles do not, however, provide practical guidance so we present a framework outlining how they might be applied to different types of disinvestment decisions. We also argue that, in this context, even the most rigorous ethical reasoning is likely to be overridden by moral intuitions and psychological biases and that disinvestment decisions will need to strike the right balance between respecting justifiable moral intuitions and overriding unjustifiable psychological impulses.

Ethical challenges of adult ECMO.

The use of extracorporeal membrane oxygenation (ECMO) is expanding rapidly, and as more centres streamline their management policies, the bioethics literature on ECMO has been highlighting the ethical challenges of using an expensive, resource-intensive technology including its eligibility, duration of support, cost-effectiveness and societal repercussions. The absence of high-quality studies on long-term outcomes of ECMO survivors leads to multiple ethical problems involving patient autonomy, beneficence and clinical wisdom pertaining to its initiation, maintenance and termination. This article reviews some of the ethical challenges that affect decision-making during ECMO therapy and suggests an ethical framework that may help the treating team deal with such conundrums, when the patient does not recover despite being on ECMO.

Covert administration of medication in food: a worthwhile moral gamble?

The covert administration of medication occurs with incapacitated patients without their knowledge, involving some form of deliberate deception in disguising or hiding the medication. Covert medication in food is a...

Conscientious Objection: A Talmudic Paradigm Shift

Conscientious objection remains a very heated topic with strong opinions arguing for and against its utilization in contemporary health care. This paper summarizes and analyzes various arguments in the bioethical literature, favoring and opposing conscientious objection, as well as some of the proposed solutions and compromises. I then present a paradigm shifting compromise approach that arises out of very recent Jewish bioethical thought that refocuses the discussion and can minimize the frequency with which conscientious objection is required.

Objeción de conciencia y aborto en Chile

This paper critically analyzes conscientious objection in the context of the new regulation of pregnancy termination in Chile. It affirms that adequate regulation should not be blind to the hostile context in which abortion rights have been enacted and the difficulties experienced. The bioethical requirements that seek to balance the interests involved must consider the legal regulation of the interests at stake, the context in which they are implemented and, fundamentally, the effectiveness of the solutions adopted. Attention should be paid to the risks involved in the proliferation of objections that are not serious and to the political use of conscientious objection to prevent the implementation of women’s reproductive rights. In describing the process of entrenchment, strengthening and expansion of the conscientious objection in Chile, we show how this process has overprotected consciousness and the risks of undermining the effectiveness of the new abortion law, hindering and dilating the enjoyment of rights entrenched by the law. In response, regulatory measures are proposed to reverse this situation, which are obtained mainly from the bioethical literature on the subject and that look at the adverse context of the guarantee of women’s sexual and reproductive rights.

Artificial womb technology and clinical translation: Innovative treatment or medical research?

In 2017 and 2019, two research teams claimed ‘proof of principle’ for artificial womb technology (AWT). AWT has long been a subject of speculation in bioethical literature, with broad consensus that it is a welcome development. Despite this, little attention is afforded to more immediate ethical problems in the development of AWT, particularly as an alternative to neonatal intensive care. To start this conversation, I consider whether experimental AWT is innovative treatment or medical research. The research–treatment distinction, pervasive in regulation worldwide, is intended to isolate research activities and subject them to a greater degree of oversight. I argue that there is a tendency in the literature to conceptualize AWT for partial ectogenesis as innovative treatment. However, there are sufficiently serious ethical concerns with experimental AWT that mean that it must not be first used on humans on the basis that it is a ‘beneficial treatment’. First, I outline the prospects for translation of AWT animal studies into treatment for human preterms. Second, I challenge the conceptualizations of experimental AWT as innovative treatment. It must be considered medical research to reflect the investigatory nature of the process and guarantee sufficient protections for subjects. Identifying that AWT is research is crucial in formulating further ethico‐legal questions regarding the experimental use of AWT. Third, I demonstrate that clinical trials will be a necessary part of the clinical translation of AWT because of requirements laid out by regulators. I consider the justification for clinical trials and highlight some of the crucial ethical questions about the conditions under which they should proceed.

Anchoring hopes in a regime of truth. The legitimizing use of cord blood-derived products in Italy

Public Umbilical Cord Blood (UCB) banking is defined by the dominant bioethics and biomedical literature as working in a regime of valuation that connects the social value of solidarity and the clinical value of collected quality UCB. Adopting the notion of registers of valuing (Heuts, F., and A. Mol. 2013. “What Is a Good Tomato? A Case of Valuing in Practice.” Valuation Studies 1 (2): 125–146), this paper challenges the aforementioned view. By exploring the Italian public system of UCB banking, it discusses disputes around the organization of the logistic of UCB donation, inspired by divergent registers of valuing enacted by involved actors. This paper focuses on the Italian public UCB banks’ involvement in experimental clinical protocols, using cells derived from UCB. It demonstrates how these experimental applications are deployed by Italian UCB bank practitioners to legitimize their work and to advance claims of jurisdictional monopoly over UCB banking and donation. It concludes that concrete arrangements of UCB banking are the outcome of negotiations among involved actors.