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The COVID-19 pandemic is putting the NHS under unprecedented pressure, requiring clinicians to make uncomfortable decisions they would not ordinarily face. These decisions revolve primarily around intensive care and whether a patient should undergo invasive ventilation. Certain vulnerable populations have featured in the media as falling victim to an increasingly utilitarian response to the pandemic—primarily those of advanced years or with serious existing health conditions. Another vulnerable population potentially at risk is those who lack the capacity to make their own (...) care decisions. Owing to the pandemic, there are increased practical and normative challenges to following the requirements of the Mental Capacity Act 2005. Both capacity assessments and best interests decisions may prove more difficult in the current situation. This may create a more paternalistic situation in decisions about the care of the cognitively impaired which is at risk of taking on a utilitarian focus. We look to these issues and consider whether there is a risk of patients who lack capacity to make their own care decisions being short-changed. (shrink)

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The shift towards "empirical bioethics" was largely triggered by a recognition that stakeholders' views and experiences are vital in ethical analysis where one hopes to produce practicable recommendations. Such perspectives can provide a rich resource in bioethics scholarship, perhaps challenging the researcher's perspective. However, overreliance on a picture painted by a group of research participants—or on pre‐existing literature in that field—can lead to a biased view of a given context, as the subjectivity of data generated in these ways cannot (and (...) should not wholly) be escaped. In response, we propose the implementation of a complementary approach of ethno‐immersion in bioethics research. By positioning oneself in the context being researched, the researcher can better understand the realities of that context. The researcher's understanding will, naturally, be subjective too. However, it will act as a better developed and more informed outsider view, when considering the picture painted by participants and previous studies, thus enabling the researcher to introduce more nuance when analysing data. We introduce this approach after examining what we call the context detachment problem, whereby some bioethics scholarship—empirical or otherwise—fails to reflect the reality of the healthcare setting it concerns. Our proposed ethno‐immersion (which differs from formal ethnography) is then explored as a response, highlighting its benefits, and answering the question of timing within a research project. Finally, we reflect on the applicability of our proposal to non‐empirical bioethics scholarship, concluding that it remains important but may require some adjustments. (shrink)

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Bioethics, Volume 36, Issue 4, Page 423-433, May 2022.

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Access to abortion care has been hugely affected by the COVID-19 pandemic. This has prompted several governments to permit the use of telemedicine for fully remote care pathways, thereby ensuring pregnant people are still able to access services. One such government is that of England, where these new care pathways have been publicly scrutinised. Those opposed to telemedical early medical abortion care have raised myriad concerns, though they largely centre on matters of patient safeguarding. It is argued that healthcare professionals (...) cannot adequately carry out their safeguarding duties if the patient is not in the room with them. These concerns lack empirical support. Emerging evidence suggests that safeguarding processes may, in fact, be more effective within telemedical abortion care pathways. In this article, we address two specific safeguarding concerns: (1) that a remote consultation prevents a healthcare professional from identifying instances of abuse, and (2) that healthcare professionals cannot reliably confirm the absence of coercion during a remote consultation. We demonstrate that such concerns are misplaced, and that safeguarding may actually be improved in telemedical care pathways as victims of abuse may find it easier to engage with services. It is inevitable that some individuals will fall through the net, but this is unavoidable even with in-person care and thus does not constitute a strong critique of the use of telemedicine in abortion care. These safeguarding concerns set aside, then, we argue that the current approval that enables telemedical early medical abortion should be afforded permanence. (shrink)

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Technology presents a means of improving health outcomes for vast numbers of individuals. It has historically been deployed to streamline healthcare delivery and reach those who would previously have faced obstacles to accessing services. It has also enabled improved health education and management. Telemedicine can be employed in everything from primary care consultations to the monitoring of chronic diseases. Despite recommendation by the World Health Organization, countries have been slow to embrace such technology in the health sector. Nonetheless, it is (...) expected to become more prevalent with increased digitization. Further, amidst the COVID‐19 pandemic, there was a rush to implement forms of telemedicine where possible to prevent patients breaking social distancing rules. In this paper, I present and defend what I term the ‘telemedical imperative’. The telemedical imperative represents a duty for healthcare systems to implement remote access to services where possible, thereby furthering the mission of equity in access to healthcare. It is intended as an addition to in‐person services rather than a replacement. After highlighting the benefits of telemedicine, I provide four criteria that must be met for the telemedical imperative to arise. The first three—safety, effectiveness, and acceptability—are consistent and essential. The fourth adapts to the service in question and requires that there be no other obstacles specific to that service that cannot reasonably be overcome. Finally, I address several potential objections to the telemedical imperative based on more general concerns around the implementation of telemedicine. (shrink)

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Direct-to-consumer genetic testing is a growing phenomenon, fuelled by the notion that knowledge equals control. One ethical question that arises concerns the proband’s duty to share information indicating genetic risks in their relatives. However, such duties are unenforceable and may result in the realisation of anticipated harm to relatives. We argue for a shift in responsibility from proband to provider, placing a duty on test providers in the event of identified actionable risks to relatives. Starting from Parker and Lucassen’s 'joint (...) account model', we adapt Kilbride’s application of the rule of rescue and balance it against the relative’s right not to know, placing responsibility on the providers of direct-to-consumer genetic testing. Where the risk of disease to a relative is actionable, we argue providers ought to share results even in the face of the proband’s objections. Confidentiality issues are navigated by a pre-emptive consent model, whereby consumers agree to the sharing of certain information with their relatives ahead of testing and as a condition of testing. When a relative is informed, the proband’s privacy is protected by maximal deidentification, and the rights of the relative are met by a stepwise approach to informing that allows them to decide how much information they receive. (shrink)

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BackgroundChronic kidney disease is a significant cause of global deaths. Those who progress to end-stage kidney disease often commence dialysis as a life-extending treatment. For cognitively impaired patients, the decision as to whether they commence dialysis will fall to someone else. This scoping review was conducted to map existing literature pertaining to how decisions about dialysis are and should be made with, for, and on behalf of adult patients who lack decision-making capacity. In doing so, it forms the basis of (...) a larger body of work that is exploring how these decisions ought to be made.MethodsTo identify relevant papers, searches were conducted on Ovid MEDLINE(R), Embase, PsychINFO, The Cochrane Library, and Web of Science. Inclusion criteria were then applied, requiring that papers: report on empirical studies about how decisions about dialysis are made and/or discuss how decisions about dialysis should be made with, for, and on behalf of adult patients who lack decision-making capacity; be published from 1961 onwards; and be published in English. This resulted in 27 papers eligible for inclusion.ResultsOf note, the majority of papers originated in the United States. There was wide variation across the included papers. Extracted data were grouped under the following themes: involving various parties (patient involvement, family dominance, and wider communication); objectivity about care options (including difficulties with family detachment); cultural sensitivity; medical versus non-medical factors; managing nonadherent patients; and the role and prevalence of substituted judgement. The literature shows that there is inconsistency in the principles and processes surrounding decisions made about dialysis with, for, and on behalf of adult patients who lack decision-making capacity.ConclusionsThis scoping review demonstrates that there is significant variation in both the practice and theory of dialysis decision making with, for, and on behalf of cognitively impaired adult patients. Complexity arises in considering who should get a say, how influential their say should be in a decision, and what factors are most relevant to the decision. A lack of up-to-date literature exploring this issue is highlighted, with this scoping review providing a useful groundwork from which further research can be undertaken. (shrink)

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Volume 20, Issue 7, July 2020, Page 199-201.

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Albertsen, in his recent article, offers an assessment of the recently introduced opt-out system for organ donation in Wales. However, he focuses on whether concerns raised prior to the enactment of the new system have been realised, rather than any positive impact on the number of actual donors. This side-lining of the main issue has resulted in a strangely positive portrayal of a system that has not yet yielded the results hoped for. Further, his failure to examine data over a (...) number of years—instead opting for just 2—fails to even provide a fair assessment of the concerns he acknowledges. (shrink)

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All four UK nations have, in recent years, introduced “opt out” organ donation systems. Whilst these systems are largely similar, they operate independently. A key feature of each policy is a residency requirement, stipulating that opt out may only apply where the deceased had been ordinarily resident in that nation for at least 12 months. A resident of Scotland who dies in England, for example, would not fall under opt out. Public awareness is the underlying reasoning for such stipulations. A (...) residency requirement was appropriate when Wales was the only UK nation with an opt out system, but, I suggest, the continued imposition of intra-UK borders on organ donation is unjustified now that all four nations operate the same policy. Further, it has the potential to limit organ donation. There is a need for all four systems to be amended to allow for UK-wide applicability, such that providing the deceased was ordinarily resident in the UK, they can fall under opt out in any of the four nations. I argue that such an amendment is ethically justified – continuing to satisfy the public awareness criterion – and practically straightforward. In doing so, I emphasise that my proposed amendment should extend only to the four UK nations, stopping short of the Crown Dependencies even though they also operate opt out systems for organ donation. (shrink)

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The last decade has seen significant developments in UK health policy, with are largely claimed to be evidence based. However, such a characterisation ought, in many cases, to be questioned. Policies can be broadly understood as based primarily on either a logical or empirical case. In the absence of relevant empirical evidence, policymakers understandably appeal to logical cases. Once such evidence is available, however, it can inform policy and enable the logical case to be set aside. Such a linear policy (...) process is not always the reality, and logical cases often continue to guide policy decisions in direct opposition to empirical evidence. In this paper, I discuss two recent examples of this disconnect between logical and empirical cases in UK health policy. The first—organ donation—illustrates an example of a significant policy change being made in opposition to the evidence. I refer to this as the improvidence approach. The second—abortion—provides an example of policymakers not making a change that has extensive supporting data. I refer to this using the more recognisable language of the precautionary approach. Ultimately, I argue that both the improvidence and precautionary approaches are examples of problematic public policy where policymakers provide no explicit justification for going against the evidence. (shrink)

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The freedom to choose for oneself is a part of what it means to be a human being.Jackson J In England and Wales, the Mental Capacity Act 20...

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In Great Britain, abortion has long proven to be contentious in the context of policy making, with it remaining a criminal offence. Despite progress over the last decade to permit home use of abortion medications and remote consultation, we have seen prosecutions in recent years. Regulatory frameworks such as this have been framed as ‘abortion exceptionalism’, such that termination of pregnancy is far more tightly regulated than comparable healthcare. One example of this exceptionalism is the strict abortion reporting requirements found (...) in Great Britain. Per these requirements, any doctor providing abortion care must notify the relevant Chief Medical Officer or Public Health Scotland of each and every termination, including a startling amount of information about the patient. The extent of these requirements raises serious questions in relation to patient confidentiality and is, I suggest, an outlier in these terms. Further, it is questionable whether such reporting can be in any way said to be in the public interest. I begin by outlining the Abortion Regulations 1991, which apply in England and Wales, before considering the updated Scottish approach brought about by the Abortion (Scotland) Amendment Regulations 2021. I then move to examine the abortion reporting requirements against our general conception of patient confidentiality, highlighting the discordance. I ultimately argue that the requirements are not adequately justified and represent yet another, often forgotten, example of abortion exceptionalism in Great Britain. Thus, I suggest that all three nations that comprise Great Britain ought to further revise their approach to abortion data. (shrink)

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Uterus transplantation (UTx) is highly anticipated for the benefits that it might bring to individuals wanting to carry a pregnancy in order to reproduce who do not have a functioning uterus. The surgery—now having been performed successfully in several countries around the world—remains experimental. However, UTx is at some point expected to become a routine treatment for people without a uterus and considering themselves in need of one: women with absolute uterine factor infertility; transgender women; and even cisgender men who (...) wish to gestate. Given the unique benefits UTx offers, uteri are likely to be ‘in demand’, and such demand, we suggest, will feasibly outstrip supply. Therefore, allocation of those uteri available for transplant may become a pressing issue. In this paper, we consider one aspect of organ allocation—the preferences of donors in making a directed or conditional donation of their uterus. To what extent, in the context of uterus donation, would such donations be ethically permissible? (shrink)

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