Journals

Parents ’ and Physicians’ Perceptions of Children’s Participation in Decision-making in Paediatric Oncology: A Quantitative Study

Journal of Bioethical Enquiry - Wed, 2017-10-11 00:00
AbstractThe goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient (<18 years). Surveys were statistically analysed by comparing physicians ’ and parents’ perspectives and by evaluating factors associated with children’s actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that for six aspects of information provision examined, parents’ and physicians’ pe rceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disea...
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The President ’s Physician: An African Play

Journal of Bioethical Enquiry - Wed, 2017-10-11 00:00
AbstractThis review examines issues relating to biomedical ethics and literature in the African dramaThe President ’s Physician by Emmanuel Babatunde Omobowale. The play investigates the psychological dilemma of Doctor Bituki Warunga, a personal physician to General Kalunga Ntibantunganyah who brutally and inhumanely rules Wavaria, a fictional African country. The doctor is faced with deciding to uphold the ethics of his profession versus terminating the tyrant ’s life to set the nation free. The play aims to help budding medical doctors rightly inculcate the principles of medical ethics—autonomy, beneficence, competence, and power—by providing a fictional platform to investigate difficult issues that can arise in clinical practice. The play highligh ts Warunga’s complex dilemma ...
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The Ethics of Biomedical Big Data

Journal of Bioethical Enquiry - Sat, 2017-10-07 00:00
AbstractThe availability of diverse sources of data related to health and illness from various types of modern communication technology presents the possibility of augmenting medical knowledge, clinical care, and the patient experience. New forms of data collection and analysis will undoubtedly transform epidemiology, public health, and clinical practice, but what ethical considerations come in to play? With a view to analysing the ethical and regulatory dimensions of burgeoning forms of biomedical big data, Brent Daniel Mittelstadt and Luciano Floridi have brought together thirty scholars in an edited volume that forms part of Springer ’s Law, Governance and Technology book series in a collection titledThe Ethics of Biomedical Big Data. With eighteen chapters partitioned into six carefu...
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Digital Humanitarians: How Big Data Is Changing the Face of Humanitarian Response

Journal of Bioethical Enquiry - Thu, 2017-10-05 00:00
AbstractThis is a review of Patrick Meier ’s 2015 book,Digital Humanitarians: How Big Data Is Changing the Face of Humanitarian Response. The book explores the role of technologies such as high-resolution satellite imagery, online social media, drones, and artificial intelligence in humanitarian responses during disasters such as the 2010 Haiti earthquake. In this analysis, the book is examined using a humanitarian health ethics perspective. (Source: Journal of Bioethical Inquiry)
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The Issues of Freedom and Happiness in Moral Bioenhancement: Continuing the Debate With a Reply to Harris Wiseman

Journal of Bioethical Enquiry - Thu, 2017-10-05 00:00
AbstractDuring the previous years, Harris Wiseman has devoted substantial attention to my stance on voluntary moral bioenhancement. He argued that he has been influenced by that position, but nonetheless criticized it. I haven ’t replied to his criticisms yet and wish to do so now. One of the reasons is to avoid my position being misrepresented. By replying to Wiseman’s criticisms, I also wish to clarify those issues in my standpoint that might have given rise to some of the misinterpretations. With the same purpose i n mind, I will demarcate my concept of voluntary moral bioenhancement from related standpoints, in particular from Persson and Savulescu’s notion of compulsory moral bioenhancement that, as I argued, diminishes our freedom (of the will). Furthermore, I will consider the...
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Morally-Relevant Similarities and Differences Between Assisted Dying Practices in Paradigm and Non-Paradigm Circumstances: Could They Inform Regulatory Decisions?

Journal of Bioethical Enquiry - Thu, 2017-10-05 00:00
AbstractThere has been contentious debate over the years about whether there are morally relevant similarities and differences between the three practices of continuous deep sedation until death, physician-assisted suicide, and voluntary euthanasia. Surprisingly little academic attention has been paid to a comparison of the uses of these practices in the two types of circumstances in which they are typically performed. Acomparative domains of ethics analysis methodological approach is used in the paper to compare 1) the use of the three practices in paradigm circumstances, and 2) the use of the practices in paradigm circumstances to their use in non-paradigm circumstances. The analytical outcomes suggest that a bright moral line cannot be demonstrated between any two of the practices in pa...
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Biomedical Big Data: New Models of Control Over Access, Use and Governance

Journal of Bioethical Enquiry - Thu, 2017-10-05 00:00
AbstractEmpirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be openly stated in informed consent documents or be implicit in the norms of confidentiality that govern the relationships of patients and healthcare professionals. However, with medicine becoming a data-intense enterprise, informed consent and medical confidentiality, as ...
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Big Data and Health Research —The Governance Challenges in a Mixed Data Economy

Journal of Bioethical Enquiry - Wed, 2017-10-04 00:00
AbstractDenmark is a society that has already moved towards Big Data and a Learning Health Care System. Data from routine healthcare has been registered centrally for years, there is a nationwide tissue bank, and there are numerous other available registries about education, employment, housing, pollution, etcetera. This has allowed Danish researchers to study the link between exposures, genetics and diseases in a large population. This use of public registries for scientific research has been relatively uncontroversial and has been supported by facilitative regulation that allows data to be used without the consent of data subjects. However, in the future much of the data will not be held by public authorities but by private companies. What are the implications of this shift for the gover...
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Hijacking Law

Law & Social Enquiry - Mon, 2017-10-02 10:25

This essay considers the legal strategies of comparative communities in South Asian, Middle Eastern, and US history. What does it mean for a particular group to “hijack” a body of law, taking everyone on board to an unwanted destination? The piece compares the legal strategies of the Parsi community in colonial and postcolonial India to those of the German Jewish yekke population in mandate Palestine and early independent Israel, the women's movement in India in recent decades, and Protestants in contemporary America before the 2015 Obergefell decision legalizing same-sex marriage. There are multiple ways of trying to take control of a body of law, and for multiple reasons. A group may capture a body of personal law to perpetuate its own values within the group. It may try to control a territorial legal system to impose its values on the entire population. It may work across bodies of personal law to obtain as uniform a result as possible—as if the system were a unified field, not a segmented one. Or its group members may make available their legal expertise to shore up a newly independent state's legal system. The essay suggests that taking control of a body of law does not necessarily mean hijacking it.

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“Going to Law”: Reflections on Law, Religion, and Mitra Sharafi's Law and Identity in Colonial South Asia

Law & Social Enquiry - Mon, 2017-10-02 10:20

This essay explores religion's need for law, comparing the story told in Mitra Sharafi's Law and Identity in Colonial South Asia (2014)—about the virtual hijacking of British colonial law to serve the communal religious needs of Parsis in colonial India—to other contexts in which secular and religious legal systems have built symbiotic relationships, including in the United States and Thailand. It concludes by urging a reweaving of religious and legal histories after the critique of secularism and its shadows, separationism, and antinomianism.

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Is there a place for CPR and sustained physiological support in brain-dead non-donors?

Journal of Medical Ethics - Thu, 2017-09-28 09:19

This article addresses whether cardiopulmonary resuscitation (CPR) and sustained physiological support should ever be permitted in individuals who are diagnosed as brain dead and who had held previously expressed moral or religious objections to the currently accepted criteria for such a determination. It contrasts how requests for care would normally be treated in cases involving a brain-dead individual with previously expressed wishes to donate and a similarly diagnosed individual with previously expressed beliefs that did not conform to a brain-based conception of death. The paper first focuses narrowly on requests for CPR and then expands its scope to address extended physiological support. It describes how refusing the brain-dead non-donor's requests for either CPR or extended support would represent enduring harm to the antemortem or previously autonomous individual by negating their beliefs and self-identity. The paper subsequently discusses potential implications of policy that would allow greater accommodations to those with conscientious objections to currently accepted brain-based death criteria, such as for cost, insurance, higher brain formulations and bedside communication. The conclusion is that granting wider latitude to personal conceptions around the definition of death, rather than forcing a contested definition on those with valid moral and religious objections, would benefit both individuals and society.

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Antimicrobial stewardship programmes: bedside rationing by another name?

Journal of Medical Ethics - Thu, 2017-09-28 09:19

Antimicrobial therapy is a cornerstone of therapy in critically ill patients; however, the wide use of antibiotics has resulted in increased antimicrobial resistance and outbreaks of resistant disease. To counter this, many hospitals have instituted antimicrobial stewardship programmes as a way to reduce the inappropriate use of antibiotics. However, uptake of antimicrobial stewardship programmes has been variable, as many clinicians fear that they may put individual patients at risk of treatment failure. In this paper, I argue that antimicrobial stewardship programmes are indeed a form of bedside rationing, and explore the risks and benefits of such programmes for individual patients in the intensive care unit, and the critically ill population in general. Using Norman Daniels’ Accountability for Reasonableness as a framework for evaluating resource allocation policies, I conclude that antimicrobial stewardship programmes are an ethically sound form of bedside rationing.

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Using stem cell-derived gametes for same-sex reproduction: an alternative scenario

Journal of Medical Ethics - Thu, 2017-09-28 09:19

It has been suggested that future application of stem-cell derived gametes (SCD-gametes) might lead to the possibility for same-sex couples to have genetically related children. Still, for this to become possible, the technique of gamete derivation and techniques of reprogramming somatic cells to a pluripotent state (directly or via somatic cell nuclear transfer) would have to be perfected. Moreover, egg cells would have to be derived from male cells and sperm cells from female cells, which is believed to be particularly difficult, if not impossible. We suggest a more plausible scenario to provide same-sex couples with the possibility to parent a child who is genetically related to both parents. Although technical feasibility is an advantage (also in terms of safety), disadvantages are that cooperation of a donor of the opposite sex is still required and that the partners are genetically linked to the resulting child in a different degree. However, since in our scenario the donor's genetic contribution would not outweigh any of the parents' genetic contribution, this alternative route may ease the fear for a possible parental claim by the donor. Like many other applications in the field of infertility treatment, the goal to create SCD-gametes for reproductive purposes is largely based on the high value attributed to genetic parenthood. Although we believe that genetic relatedness is neither a necessary nor a sufficient condition for ‘good’ parenthood, we do believe that many people may consider our scenario a welcome alternative.

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Bridging the education-action gap: a near-peer case-based undergraduate ethics teaching programme

Journal of Medical Ethics - Thu, 2017-09-28 09:19

Undergraduate ethics teaching has made significant progress in the past decade, with evidence showing that students and trainee doctors feel more confident in identifying and analysing ethical issues. There is general consensus that ethics education should enable students and doctors to take ethically appropriate actions, and nurture moral integrity. However, the literature reports that doctors continue to find it difficult to take action when faced with perceived unethical behaviour. This has been evident in recent healthcare scandals, in which care has fallen below acceptable ethical standards, despite the presence of professional ethical guidelines and competencies. The National Foundation Training Programme forms the first 2 years of training for new UK doctors. We designed a Foundation Doctor (FD)-led teaching programme in which medical students were invited to bring cases and experiences from clinical placements for small group discussion facilitated by FDs. The aim was to enable students to act ethically in practice through developing moral sensitivity and moral identity, together with skills in ethical reasoning and tools to address barriers to taking ethical action. FDs were chosen as facilitators, based on the evidence that near-peer is an effective form of teaching in medicine and may provide positive role models for students. This article reviews the background rationale for the programme and its design. Important themes emerging from the case discussions are explored. Student and FD facilitator feedbacks are evaluated, and practical challenges to the implementation of this type of programme are discussed.

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The moral bioenhancement of psychopaths

Journal of Medical Ethics - Thu, 2017-09-28 09:19

We argue that the mandatory moral bioenhancement of psychopaths is justified as a prescription of social morality. Moral bioenhancement is legitimate when it is justified on the basis of the reasons of the recipients. Psychopaths expect and prefer that the agents with whom they interact do not have certain psychopathic traits. Particularly, they have reasons to require the moral bioenhancement of psychopaths with whom they must cooperate. By adopting a public reason and a Kantian argument, we conclude that we can justify to a psychopath being the recipient of mandatory moral bioenhancement because he has a reason to require the application of this prescription to other psychopaths.

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Nudge me, help my baby: on other-regarding nudges

Journal of Medical Ethics - Thu, 2017-09-28 09:19

There is an increasing interest in the possibility of using nudges to promote people's health. Following the advances in developmental biology and epigenetics, it is clear that one's health is not always the result of one's own choices. In the period surrounding pregnancy, maternal choice behaviour has a significant influence on perinatal morbidity and mortality as well as the development of chronic diseases later in life. One's health is thus a matter of one's own as well as one's maternal choices. Therefore, self-regarding and other-regarding nudges should be considered as viable strategies to promote health. In this article, we introduce the concept of other-regarding nudges. We use the harm principle and the principle of beneficence to justify these other-regarding nudges. We conclude by stressing the importance of a fair assessment of expectations towards the nudgee, when determining whether a nudge is aimed at preventing harm or promoting a good.

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Empirical evidence against placebo controls

Journal of Medical Ethics - Thu, 2017-09-28 09:19

The revised Declaration of Helsinki allows placebo-controlled trials to be used even when there is an established therapy, provided there are adequate ‘methodological’ reasons for doing so. This seems to violate the principle of beneficence: where there is an established therapy, physicians treating patients with a placebo are withholding a known effective therapy. Because of this problem, we hypothesised that clinical researchers may be unwilling to risk violating the principle of beneficence and employ placebo-controlled trials in cases where there is an established therapy. In this paper, we began to investigate this hypothesis. After summarising the arguments for and against using placebo controls in clinical practice, we exploredthe extent to which placebo-controlled trials are used in cases where there is an established therapy. To do this, we conducted as systematic search for all placebo-controlled trials published in 2015 in the five highest impact general medical journals. We identified 70 placebo-controlled trials. Of these, 66 were for indications where there was no established effective therapy. Only four used a placebo control in spite of there being an available effective therapy. The infrequent use of placebo controlled trials where established therapy exists highlights a seeming discrepancy between what the Declaration of Helsinki allows and what clinical investigators believe to be ethically acceptable. The evidence presented in this paper suggests that the Declaration of Helsinki be reconsidered, and perhaps revised, in light of actual practice.

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Pathogenic variants in the healthy elderly: unique ethical and practical challenges

Journal of Medical Ethics - Thu, 2017-09-28 09:19

Genetic research into ageing, longevity and late-onset disease is becoming increasingly common. Yet, there is a paucity of knowledge related to clinical actionability and the return of pathogenic variants to otherwise healthy elderly individuals. Whether or not genetic research in the elderly should be managed differently from standard practices adapted for younger populations has not yet been defined. In this article, we provide an overview of ethical and practical challenges in preparing for a genetic study of over 14 000 healthy Australians aged 70 years or older enrolled in the ASPirin in Reducing Events in the Elderly (ASPREE) Healthy Ageing Biobank. At the time of consent, all participants in this study were free of life-threatening illness, cardiovascular disease or cognitive impairment. ASPREE is thus a cohort of healthy elderly individuals with seemingly minimal burden of genetic disease recruited without ascertainment bias. The cohort presents a unique opportunity to address the penetrance of known pathogenic variants in a population without disease symptoms; however, it also raises a number of ethical concerns regarding the interpretation and disclosure of variants with known clinical actionability. Some of the challenges include (a) how to manage the interpretation, disclosure and actioning of pathogenic variants found in otherwise healthy elderly adults without disease symptoms, (b) whether or not to disclose findings for the benefit of family members rather than elderly consented donors themselves, (c) how to manage the return of genetic findings to the elderly individuals who are now in severe cognitive decline or terminal illness, (d) how to ensure quality of information and clinical service upon disclosure of results to this demographic and (e) how to prepare for the insurance implications of disclosing genetic information under Australian law. We discuss these and other dilemmas and propose a defensible plan of management.

Trial registration number

ISRCTN83772183

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Ethics briefing

Journal of Medical Ethics - Thu, 2017-09-28 09:19
Decriminalisation of abortion

Doctors and medical students in the UK have voted in support of the decriminalisation of abortion for women who self-administer abortions and healthcare professionals who provide abortions within the context of their clinical practice. Abortion should be treated as a medical issue rather than a criminal one.

Background to the vote

The vote took place at the end of June during the British Medical Association’s (BMA) Annual Representative Meeting (ARM), where representatives of doctors and medical students from across the British Isles gathered to set BMA policy through democratic procedures.

Representatives considered the issue of decriminalisation during a 2-hour debate, where diverse and opposing viewpoints were heard. The debate was informed by a neutral discussion paper that was published by the BMA in February, which provided a guide to some of the key legal and ethical issues raised by the debate around decriminalisation.

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Correction: What has philosophy got to do with it? Conflicting views andvalues in end-of-life care

Journal of Medical Ethics - Thu, 2017-09-28 09:19

Wilkinson D. What has philosophy got to do with it? Conflicting views and values in end-of-life care. J Med Ethics 2017;43:591–592.

This article published with a missing ‘with’ in the title. The corrected title should be:

What has philosophy got to do with it? Conflicting views and values in end-of-life care.

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