Journal of Medical Ethics

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Clinical ethics and the duty of care

Mon, 2019-07-01 09:34

Scholarly inquiry into medical ethics should inform and guide those involved in making challenging ethical decisions.1 It should strive to be integral to the work of health care professionals and health care institutions2 and clinical relevance seems essential for this to happen.

To acknowledge the importance of clinical relevance for medical ethics, the Journal of Medical Ethics has introduced a regular Clinical Ethics section at the beginning of each issue. Papers that we think are likely to be of particular interest and relevance to clinicians will be placed in this section of the journal.

One way in which a paper can be framed for a more clinical audience is by organising it around a scenario that healthcare professions might face. The paper published in this issue’s Clinical Ethics section considers a dilemma about whether an egg donor should be contacted to help diagnose a condition that...

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Is it acceptable to contact an anonymous egg donor to facilitate diagnostic genetic testing for the donor-conceived child?

Mon, 2019-07-01 09:34

We discuss a case where medically optimal investigations of health problems in a donor-conceived child would require their egg donor to participate in genetic testing. We argue that it would be justified to contact the egg donor to ask whether she would consider this, despite her indicating on a historical consent form that she did not wish to take part in future research and that she did not wish to be informed if she was found to be a carrier of a ‘harmful inherited condition’. We suggest that we cannot conjecture what her current answer might be if, by participating in clinical genetic testing, she might help reach a diagnosis for the donor-conceived child. At the point that she made choices regarding future contact, it was not yet evident that the interests of the donor-conceived child might be compromised by her answers, as it was not foreseen that the egg donor’s genome might one day have the potential to enable diagnosis for this child. Fertility consent forms tend to be conceptualised as representing incontrovertible historical boundaries, but we argue that rapid evolution in genomic practice means that consent in such cases is better seen as an ongoing and dynamic process. It cannot be possible to compel the donor to aid in the diagnosis of the donor-conceived child, but she should be given the opportunity to do so.

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Whither a Welfare-Funded Sex Doula' Programme?

Mon, 2019-07-01 09:34

The sexual citizenship of disabled persons is an ethically contentious issue with important and broad-reaching ramifications. Awareness of the issue has risen considerably due to the increasingly public responses from charitable organisations which have recently sought to respond to the needs of disabled persons—yet this important debate still struggles for traction in academia. In response, this paper continues the debate raised in this journal between Appel and Di Nucci, concurring with Appel’s proposals that sexual pleasure is a fundamental human right and that access to sexual citizenship for the severely disabled should be publicly funded. To that endeavour, this paper refutes Di Nucci’s criticism of Appel’s sex rights for the disabled and shows how Di Nucci’s alternative solution is iniquitous. To advance the debate, I argue that a welfare-funded ‘sex doula' programme would be uniquely positioned to respond to the sexual citizenship issues of disabled persons.

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Waiting for a miracle or best medical practice? End-of-life medical ethical dilemmas in Bahrain

Mon, 2019-07-01 09:34
Background and objectives

In Bahrain, maintaining life support at all costs is a cultural value considered to be embedded in the Islamic religion. We explore end-of-life decision making for brain dead patients in an Arab country where medical cultures are dominated by Western ideas and the lay culture is Eastern.

Methods

In-depth interviews were conducted from February to April 2018 with 12 Western-educated Bahraini doctors whose medical practice often included end-of-life decision making. Discussions were about who should make withdrawal of life support decisions, how decisions are made and the context for decision making. To develop results, we used the inductive method of thematic analysis.

Results

Informants considered it difficult to engage non-medical people in end-of-life decisions because of people’s reluctance to talk about death and no legal clarity about medical responsibilities. There was disagreement about doctors’ roles with some saying that end-of-life decisions were purely medical or purely religious but most maintaining that such decisions need to be collectively owned by medicine, patients, families, religious advisors and society. Informants practised in a legal vacuum that made their ethics interpretations and clinical decision making idiosyncratic regarding end-of-life care for brain dead patients. Participants referred to contrasts between their current practice and previous work in other countries, recognising the influences of religious and cultural dimensions on their practice in Bahrain.

Conclusions

End-of-life decisions challenge Western-trained doctors in Bahrain as they grapple with aligning respect for local culture with their training in the ethical practice of Western medicine.

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Doctors perceptions of how resource limitations relate to futility in end-of-life decision making: a qualitative analysis

Mon, 2019-07-01 09:34
Objective

To increase knowledge of how doctors perceive futile treatments and scarcity of resources at the end of life. In particular, their perceptions about whether and how resource limitations influence end-of-life decision making. This study builds on previous work that found some doctors include resource limitations in their understanding of the concept of futility.

Setting

Three tertiary hospitals in metropolitan Brisbane, Australia.

Design

Qualitative study using in-depth, semistructured, face-to-face interviews. Ninety-six doctors were interviewed in 11 medical specialties. Transcripts of the interviews were analysed using thematic analysis.

Results

Doctors’ perceptions of whether resource limitations were relevant to their practice varied, and doctors were more comfortable with explicit rather than implicit rationing. Several doctors incorporated resource limitations into their definition of futility. For some, availability of resources was one factor of many in assessing futility, secondary to patient considerations, but a few doctors indicated that the concept of futility concealed rationing. Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing.

Conclusions

Doctors’ ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors’ role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making.

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Meeting the Epicurean challenge: a reply to Abortion and Deprivation'

Mon, 2019-07-01 09:34

Anna Christensen argues that it is implausible to claim that abortion and murder are morally impermissible given that they deprive individuals of a future like ours (or ’FLO'). In this essay, I provide two responses to Christensen’s argument. First, I show that the premises upon which Christensen’s argument relies have implausible implications. Second, I provide a direct response to Christensen’s challenge, showing that abortion and murder are morally impermissible given that they do deprive individuals of an FLO. Doing so involves drawing a distinction between (1) Acts of killing and (2) Death (which is the outcome of acts of killing). Christensen focuses on the latter, but it is the former that is the proper subject in the abortion debate. I conclude that Christensen has failed to provide a response to arguments—like the one presented by Marquis —that murder and abortion are impermissible given that they deprive individuals of an FLO.

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Informed consent for early-phase clinical trials: therapeutic misestimation, unrealistic optimism and appreciation

Mon, 2019-07-01 09:34

Unrealistic therapeutic beliefs are very common—the majority of patient-subjects (up to 94%) enrol in phase 1 trials seeking and expecting significant medical benefit, even though the likelihood of such benefit has historically proven very low. The high prevalence of therapeutic misestimation and unrealistic optimism in particular has stimulated debate about whether unrealistic therapeutic beliefs in early-phase clinical trials preclude adequate informed consent. We seek here to help resolve this controversy by showing that a crucial determination of when such therapeutic beliefs are ethically problematic turns on whether they are causally linked and instrumental to the motivation to participate in the trial. Thus, in practice, it is ethically incumbent on researchers to determine which understanding and beliefs lead to the participant’s primary motivation for enrolling, not to simply assess understanding, beliefs and motivations independently. We further contend that assessing patient-subjects’ appreciation as a component of informed consent—it is already an established component of decision-making capacity assessments—can help elucidate the link between understanding-beliefs and motivation; appreciation refers to an individual’s understanding of the personal significance of both the medical facts and the experience of trial participation. Therefore, we recommend that: (1) in addition to the usual question, ‘Why do you want to participate in this trial?’, all potential participants should be asked the question: ‘What are you giving up by participating in this trial?’ and (2) researchers should consider the settings in which it may be possible and practical to obtain ‘two-point consent’.

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Ethical issues raised by cluster randomised trials conducted in low-resource settings: identifying gaps in the Ottawa Statement through an analysis of the PURE Malawi trial

Mon, 2019-07-01 09:34

The increasing use of cluster randomised trials in low-resource settings raises unique ethical issues. The Ottawa Statement on the Ethical Design and Conduct of Cluster Randomised Trials is the first international ethical guidance document specific to cluster trials, but it is unknown if it adequately addresses issues in low-resource settings. In this paper, we seek to identify any gaps in the Ottawa Statement relevant to cluster trials conducted in low-resource settings. Our method is (1) to analyse a prototypical cluster trial conducted in a low-resource setting (PURE Malawi trial) with the Ottawa Statement; (2) to identify ethical issues in the design or conduct of the trial not captured adequately and (3) to make recommendations for issues needing attention in forthcoming revisions to the Ottawa Statement. Our analysis identified six ethical aspects of cluster randomised trials in low-resource settings that require further guidance. The forthcoming revision of the Ottawa Statement should provide additional guidance on these issues: (1) streamlining research ethics committee review for collaborating investigators who are affiliated with other institutions; (2) the classification of lay health workers who deliver study interventions as health providers or research participants; (3) the dilemma experienced by investigators when national standards seem to prohibit waivers of consent; (4) the timing of gatekeeper engagement, particularly when researchers face funding constraints; (5) providing ancillary care in health services or implementation trials when a routine care control arm is known to fall below national standards and (6) defining vulnerable participants needing protection in low-resource settings.

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Transwomen in elite sport: scientific and ethical considerations

Mon, 2019-07-01 09:34

The inclusion of elite transwomen athletes in sport is controversial. The recent International Olympic Committee (IOC) (2015) guidelines allow transwomen to compete in the women’s division if (amongst other things) their testosterone is held below 10 nmol/L. This is significantly higher than that of cis-women. Science demonstrates that high testosterone and other male physiology provides a performance advantage in sport suggesting that transwomen retain some of that advantage. To determine whether the advantage is unfair necessitates an ethical analysis of the principles of inclusion and fairness. Particularly important is whether the advantage held by transwomen is a tolerable or intolerable unfairness. We conclude that the advantage to transwomen afforded by the IOC guidelines is an intolerable unfairness. This does not mean transwomen should be excluded from elite sport but that the existing male/female categories in sport should be abandoned in favour of a more nuanced approach satisfying both inclusion and fairness.

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The truth behind conscientious objection in medicine

Mon, 2019-07-01 09:34

Answers to the questions of what justifies conscientious objection in medicine in general and which specific objections should be respected have proven to be elusive. In this paper, I develop a new framework for conscientious objection in medicine that is based on the idea that conscience can express true moral claims. I draw on one of the historical roots, found in Adam Smith’s impartial spectator account, of the idea that an agent’s conscience can determine the correct moral norms, even if the agent’s society has endorsed different norms. In particular, I argue that when a medical professional is reasoning from the standpoint of an impartial spectator, his or her claims of conscience are true, or at least approximate moral truth to the greatest degree possible for creatures like us, and should thus be respected. In addition to providing a justification for conscientious objection in medicine by appealing to the potential truth of the objection, the account advances the debate regarding the integrity and toleration justifications for conscientious objection, since the standard of the impartial spectator specifies the boundaries of legitimate appeals to moral integrity and toleration. The impartial spectator also provides a standpoint of shared deliberation and public reasons, from which a conscientious objector can make their case in terms that other people who adopt this standpoint can and should accept, thus offering a standard fitting to liberal democracies.

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Is it just semantics? Medical students and their 'first patients

Mon, 2019-07-01 09:34

There have been multiple factors involved in the decline of the anatomy course’s central role in medical education over the last century. The course has undergone a multitude of changes, in large part due to the rise in technology and cultural shifts away from physical dissection. This paper argues that, as the desire of medical schools to introduce clinical experiences earlier in the curriculum increased, anatomy courses began implementing changes that would align themselves with the shifting culture towards incorporating humanistic values early on in the medical curriculum. One of these changes, argued as a product of this shift, included calling a cadaver a ‘patient’ and introducing the cadaver as a student’s ‘first patient’. This change has been seen in different universities and textbooks. This paper argues that the use of the words ‘patient’ to describe the cadaver in order to promote principled habits in medical students may in fact create an environment that does the opposite. By equating an environment in which the subject of dissection is lifeless and incapable of participation, and the space is discouraging of emotions and conducive to untested coping mechanisms to the clinical environment through using the word ‘patient’, values like detached concern, a controversial practice in medicine, can be implicitly encouraged. An ethical analysis of the use of the word ’patient’ to describe the cadaver shows that this practice can promote unethical habits in students and that changing this aspect of anatomy lab culture could improve ethical dispositions of future physicians.

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Murder, abortion, contraception, greenhouse gas emissions and the deprivation of non-discernible and non-existent people: a reply to Marquis and Christensen

Mon, 2019-07-01 09:34

Marquis’s account of the ethics of abortion is unsatisfactory but not as Christensen implies baseless. It requires to be amended rather than abandoned. It is true, as Marquis asserts that murder and abortion both might deprive people of something of value to them, in particular, the life of a sort that might have been to them worth living. However, it is mistaken to conclude, as Marquis does, that murder and abortion are thereby morally equivalent. Not all deprivation is wrongful. Not all that is wrongful is wrongful because it deprives someone of something. Contrary to what Christensen asserts, and Marquis seems to accept, it is not solely those discernible people who currently exist who might be deprived by our current actions. It is not only towards and concerning such living discernible people that we can have moral duties. It is not only such living discernible people who can be the beneficiaries of our generosity. Hence, contraception and the emission of greenhouse gases are, like abortion, issues that raise significant moral questions; however, they might each be properly answered. Nonetheless, it does not follow that is morally equivalent to each other far less than they are all morally equivalent to murder. If and when they are morally wrong, they can be different wrongs.

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Defending the two tragedies argument: a response to Simkulet

Mon, 2019-07-01 09:34

According to the two-tragedies argument proponents of pro-life can justifiably prioritize efforts to prevent abortion rather than miscarriages due to the fact that abortions in contrast to miscarriages involves usually the act of killing. William Simkulet has recently argued against this argument claiming that it fails as it (a) is in conflict with the common sense pro-life view on abortion and (b) leads to an overestimation of the moral value of preventing the ‘second tragedy’, namely the act of killing, compared with the value of preventing the death of an individual. In this article, I argue against to his charges against the two tragedies argument by demonstrating that this argument is not only compatible but also in line with the common sense pro-life view and that the argument does not overestimate moral significance of the act of killing.

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Ethics briefing

Mon, 2019-07-01 09:34
Assisted dying updateRoyal College of Physicians (RCP) adopts neutral position on assisted dying

In March 2019, the RCP announced that it would adopt a neutral position on assisted dying, following a survey of its UK fellows and members.1

The College had previously polled members and fellows on what the RCP position should be in 2014, at that time 44.4% of respondents thought the RCP should be opposed to assisted dying; 31% thought it should be neutral or have no position; and 24.6% thought it should be in favour. On the basis of these figures, the College reaffirmed its position opposing assisted dying.2

In announcing the 2019 survey, the College’s Council resolved that they would require a ‘supermajority’ of 60% to adopt a position either supporting or opposing a change in the law; if no such majority was received, the College would move to a...

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Correction: Is it ethical to provide IVF add-ons when there is no evidence of a benefit if the patient requests it?

Mon, 2019-07-01 09:34

Zemyarska MS. Is it ethical to provide IVF add-ons when there is no evidence of a benefit if the patient requests it? J Med Ethics 2019;45:346–50. doi: 10.1136/medethics-2018-104983.

The Acknowledgements section of Dr Zemyarska’s Student Essay that was published in the May 2019 issue of the Journal of Medical Ethics should have read: ’Dr Zemyarska was assisted in the preparation of her student essay by Professor Christian Becker who conceived the topic and the initial title of the essay and then provided feedback on one draft. Dr Kevin Coward also provided feedback on the essay in his capacity as her personal tutor.'

The Competing Interests statement should have read: ’Dr Zemyarska worked at a fertility clinic offering add-ons from October 2018 to March 2019, but has since transitioned to healthcare consulting. Her original submission and the first revision to it were submitted prior to her employment at a fertility clinic.’

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