Stephen Gardiner’s notion of a perfect moral storm is central to understanding these issues.
The authors recognise the ‘ethical basis for the claim of healthcare professionals having a special responsibility in climate change is far from being obvious’. The theoretical framework they choose for making this tentative link more apparent is Korsgaard’s theory of practical identities. The main argument of the authors seems to be that practical identities are pluralistic—a person can identify as a physician and environmentalist simultaneously—and the normative...]]>
We explore what ethical issues are being experienced by clinical scientists, how they think such issues could be best analysed and managed, and whether their practice might be enhanced by more situated approaches to ethics deliberation and practice such as ethical preparedness. From thematic analysis of cases presented by clinical scientists at a specially convened meeting of the UK Genethics Forum, we derived three main ethical themes: (1) the redistribution of labour and responsibilities resulting from the practice of genomic medicine; (2) the interpretation and certainty of results and (3) the proposal that better standardisation and consistency of ethical approaches (for example, more guidelines and policy) could resolve some of the challenges arising.
We argue that although standardisation is important for promoting shared understandings of good (including ethical) practice, supplementary approaches to enhance and sustain ethical preparedness will be important to help clinical scientists and others in the recently expanded genetic/genomic medicine environment foster quality ethical thinking.
]]>Institutional review boards (IRBs) have been criticised for delays in approvals for research proposals due to inadequate or inexperienced IRB staff. Artificial intelligence (AI), particularly large language models (LLMs), has significant potential to assist IRB members in a prompt and efficient reviewing process.
Four LLMs were evaluated on whether they could identify potential ethical issues in seven validated case studies. The LLMs were prompted with queries related to the proposed eligibility criteria of the study participants, vulnerability issues, information to be disclosed in the informed consent document (ICD), risk–benefit assessment and justification of the use of a placebo. Another query was issued to the LLMs to generate ICDs for these case scenarios.
All four LLMs were able to provide answers to the queries related to all seven cases. In general, the responses were homogeneous with respect to most elements. LLMs performed suboptimally in identifying the suitability of the placebo arm, risk mitigation strategies and potential risks to study participants in certain case studies with a single prompt. However, multiple prompts led to better outputs in all of these domains. Each of the LLMs included all of the fundamental elements of the ICD for all case scenarios. Use of jargon, understatement of benefits and failure to state potential risks were the key observations in the AI-generated ICD.
It is likely that LLMs can enhance the identification of potential ethical issues in clinical research, and they can be used as an adjunct tool to prescreen research proposals and enhance the efficiency of an IRB.
Kennedy rightly argues that empirical research is essential for understanding the experiences of pregnancy loss and AAPT
In this paper, I examine whether there are ethical reasons to prohibit trials on MRTs in the context of infertility when they are permitted for preventing mitochondrial disease. Allowing MRTs in one context but not the other might be justified either because their application in the context of mitochondrial disease (1) is supported by a more convincing evidence base, (2) has a higher potential benefit or (3) has a lower risk. I compare both applications of MRTs with respect to these three factors. I conclude that there is no convincing reason to prohibit clinical trials on MRTs for infertility when they are permitted in the context of mitochondrial disease.
]]>I praise the authors for such...]]>
Importantly, there is a small but significant group of neonates that can be classified as severely premature (those born <28...]]>
Romanis and Adkins correctly point out that much of the discourse and care surrounding preterm deliveries focuses mainly on the infant. I agree with Romanis and Adkins that true holistic care should also include the parents rather than focusing exclusively on the child. However, the language they use to petition...]]>
In 2022, the Supreme Court of the...]]>
Romanis and Adkins use the term ‘pregnancy loss’ to refer to the phenomenon where individuals experience a complex set of emotions following the premature ending of pregnancy, despite the survival of the gestated entity. Following Golish and Powell, the authors note how parents may experience contradictory emotions, such as joy mixed with grief, as...]]>
Some commentaries question the usefulness of developing an account of the sort we provide,
Genetic testing presents unique ethical challenges for research and clinical practice, particularly in low-resource settings. To address such challenges, context-specific understanding of ethical, legal and social issues is essential. Return of genetics and genomics research (GGR) results remains an unresolved yet topical issue particularly in African settings that lack appropriate regulation and guidelines. Despite the need to understand what is contextually acceptable, there is a paucity of empirical research and literature on what constitutes appropriate practice with respect to GGR.
The study assessed patients’ awareness, experiences and perceptions regarding genetic testing and the return of GGR results in a hypothetical context.
This cross-sectional study employed a qualitative exploratory approach. Respondents were patients attending the medical outpatient unit of Mulago National Hospital. Three deliberative focus group discussions involving 18 respondents were conducted. Data were analysed through thematic analysis.
Three main themes and several subthemes were identified. Most respondents were aware of genetic testing, supportive of GGR and receiving results. However, only a few had undergone genetic testing due to cost constraints. They articulated the need for adequate information and genetic counselling to inform decision-making. Privacy of results was important to respondents while others were willing to share results.
There was general awareness and support for GGR and the return of results. Stigmatisation emerged as a barrier to disclosure of results for some. Global health inequity impacts access and affordability of genetic testing and counselling in Africa and should be addressed as a matter of social justice.
During the pandemic, numerous calls were made for those voluntarily refusing vaccination to be deprioritised when allocating scarce healthcare resources. While these calls were rejected, the likelihood of the same calls being made during future pandemics necessitates a thorough examination of the ethical implications entailed by such a policy.
Here, I consider an intuitive argument for the use of vaccination status when allocating healthcare resources. This argument claims that, by avoiding vaccination, vaccine refusers are failing to fulfil a social obligation to protect those around them from harm by facilitating herd immunity. They are, therefore, less deserving of healthcare than their vaccinated peers.
I explore three objections to this argument. While a first objection, asserting that no individual can be held responsible for a failure to develop herd immunity, fails, I find two further responses, respectively asserting the primacy of patient autonomy and highlighting the harms deprioritising vaccine refusers would cause to disadvantaged minorities, compelling. I, therefore, conclude that vaccination status should not be considered during healthcare resource allocation, as such discrimination would disproportionately harm marginalised communities.
]]>Authors De Marco and colleagues have presented a new model on the concept of invasiveness, redefining both its technical definition and practical implementation.
Initially, one may notice there is no mention of clinical relevancy, confusion among patients or whether the discrepancy in terms is causing miscommunication. It seems reasonable that some clinical confusion may exist, but so too does a similar imbalance of terms when speaking technically across the specialties; take depression and its definition as a primary example.
While I...]]>
While we agree that the standard account of invasiveness fails to capture existing use and are supportive of their aim, here we express scepticism about the practical utility of De Marco et al’s revised account. Our scepticism concerns the application of De Marco et al’s revised account in the narrow context of clinician–patient communication and deliberation about...]]>
In the contemporary medical ethics landscape, ennui emerges from labyrinthine historical antecedents, manifesting as profound existential drift among healthcare professionals. This state, marked by discord between self and purposive existence, leads to disengagement and disillusionment,...]]>
We propose that the meaning of terms such as ‘invasiveness’ is necessarily heterogeneous, and that...]]>
When making decisions for children, two ethical models predominate, the promotion of the child’s best interests or the avoidance of harm. However, in some circumstances, particularly for children with life-limiting and/or life-threatening illness, all options may be associated with risk. There are no good options, only potentially harmful choices.
In this paper, we explore decisions made by one family in such circumstances. We describe a model adopted from risk management programmes beyond medicine, which offers a potential framework for identifying risks to the child that are morally permissible. Some risks and harms to a child, not ordinarily permitted, may be acceptable when undertaken in the pursuit of a specified desired good, so long as they are as low as reasonably practicable.
]]>Between 6 August and 22 October 2022, third-year and fourth-year US medical students applying to US residency programmes were surveyed through social media and direct outreach to medical schools. Analysis of quantitative and qualitative data from 494 responses was performed to assess downstream effects of Dobbs on residency applicants’ family, health and career choices.
Most respondents said changes in abortion access would likely or very likely influence their decision regarding location of considered residency programme (76.9%), where to start a family (72.2%) and contraceptive planning for them or their partner (57.9%). Cis-gender females were more influenced by Dobbs regarding where (5 (4, 5) p<0.001) and when (3 (3, 5) p<0.001) to start a family. In qualitative responses, medical trainees highlighted the importance of abortion access for their patients, themselves and their loved ones.
Medical trainees are incorporating state abortion access into their residency programme choices. Future physicians care about both the quality of care they will be able to provide and their own health. For personal and professional reasons, reproductive healthcare access is now a key factor in residency match decisions.
]]>This article explores four possible approaches, found in numerous common law jurisdictions, which can be used to address cases involving embryo mix-ups. Our analysis reveals several avenues through which legal parentage can be established. It can be done through gestation and the marital presumption, genetic connections, by adhering to the principle of the best interests of the child, or by recognising multiple individuals as legal parents. We review the advantages and disadvantages of each approach, but we have one clear recommendation: resolving embryo mix-up cases should be done proactively through the establishment of legislation and guidelines, rather than relying on post hoc individual court decisions. Such legislation and guidelines should guarantee the consistency of values throughout diverse reproductive contexts and mandate that fertility clinics and medical professionals provide individuals with comprehensive information regarding the potential risks associated with assisted reproductive treatments.
]]>The article first explains the legal requirements for a strike mandate and illustrates how votes in strike ballots can be counterproductive, bringing about outcomes opposite of what the voter wanted. Second, it argues that the turnout threshold responsible for these surprising results is undemocratic, since it means that outcomes need not reflect the wishes of those balloted. Third, it suggests that this has consequences for how balloted workers ought to vote, if they want the process to be more democratic. In particular, I propose that those who are neutral or indifferent...]]>
However, I argue that MEURI does not truly lie at the intersection of clinical care and research. Due to its intent, structure and oversight requirements, it takes on most of the crucial features of research, to the point that it is best understood as a form of research. As a result, cases where MEURI could practicably be applied should instead make use of existing research frameworks. For those circumstances where research is truly impracticable, a more straightforward oversight system than MEURI is needed. While existing practices of compassionate use have some applicability, proposals to make use of clinical ethics committees to oversee unproven interventions may help achieve the right balance in acting in a patient’s best interests when the relevant evidence base is weak.
]]>Patient involvement is used to describe the inclusion of patients as active participants in healthcare decision-making and research. This study aimed to investigate incoming year 1 medical (MBChB) students’ attitudes and opinions regarding patient involvement in this context.
We established a staff–student partnership to formulate the design of an online research survey, which included Likert scale questions and three short vignette scenarios designed to probe student attitudes towards patient involvement linked to existing legal precedent. Incoming year 1 medical students (n=333) were invited to participate in the survey before formal teaching commenced.
Survey data (49 participants) indicate that students were broadly familiar with, and supportive of, patient involvement in medical treatment. There was least support for patient involvement in conducting (23.9%), contributing to (37.0%) or communicating research (32.6%), whereas there was unanimous support for patients choosing treatment from a selection of options (100%).
Incoming members of the medical profession demonstrate awareness of the need to actively involve patients in healthcare decision-making but are unfamiliar with the utility and value of such involvement in research. Further empirical studies are required to examine attitudes to patient involvement in healthcare.
Given its ubiquity, we might presume that we all understand the presumption’s meaning and application in the same way. Evidence demonstrates that this is not the case and that this has led to harm in vulnerable persons. There is thus strong reason to question our presumptions about the presumption of capacity.
We distinguish between two main ways of understanding and applying the presumption of capacity, and advocate for the one that we argue mitigates risk of harm. Our proposed interpretation offers many advantages in that it is consonant with actual practice of capacity evaluations, precludes confused and abusive avoidance of needed evaluations, and preserves the respect for autonomy motivating the presumption in the first place.
]]>The best solution –...]]>
This article contends that exemplarist medical ethics provides action guidance on everyday medical ethical issues. Further, it offers an ethical methodology that is not tethered to a comprehensive doctrine of the good.
The paper develops an account of, and draws on Zagzebski’s exemplarist moral theory. It then describes how medical providers can morally deliberate by appealing to exemplars. I contend there are three modes of exemplarist action guidance: dialogue, emulation and substituted judgement. It demonstrates how each of these modes guides moral deliberation regarding quotidian medical ethical issues. The article then turns to a moral exemplar of medical practice, Dr. Jim O’Connell, who Tracy Kidder profiles in his 2023 book, Rough Sleepers: Dr. Jim O’Connell’s Urgent Mission to Bring Healing to Homeless People. The advantages and challenges of this approach are delineated before a brief conclusion.
]]>The concept of ‘clinical unease’ is framed with reference to the broader experience of clinical decision-making, and distinguished from other widely discussed phenomena in the healthcare literature like moral distress and conscientious objection. A number of reported cases are briefly examined where the courts were invited to rule in circumstances of apparent ‘unease’. The respective responsibilities of clinicians and courts are discussed: in particular, their capability and readiness to respond to matters of ethical concern.
Four imagined clinical scenarios are outlined where a clinical team might welcome a court adjudication, under current rules. Consideration is given to the likelihood of such cases being heard, and to whether there may be better remedies than the courts. There are final reflections on what clinicians may actually wish for in seeking court involvement, and on whether a willingness to engage with the experience of clinical unease may lead to greater sensitivity towards the value perspectives of others.
]]>This paper argues that clinical, professional and reputational safety will be risked if this deficit of professional guidance for clinical users of AI-CDDSs is not redressed. We argue it is not enough to develop training for clinical users without first establishing professional guidance regarding the rights and expectations of clinical users.
We conclude with a call to action for clinical regulators: to unite to draft guidance for users of AI-CDDS that helps manage clinical, professional and reputational risks. We further suggest that this exercise offers an opportunity to address fundamental issues in the use of AI-CDDSs; regarding, for example, the fair burden of responsibility for outcomes.
]]>According to the German Genetic Diagnostics Act (Gendiagnostikgesetz) in case of an ‘avoidable or treatable’ genetic disorder, geneticists ought to confine themselves to the obligated advice to the patient. Whether a breach of the duty of confidentiality can be justified in exceptional cases by ‘necessity as justification’ for actively informing relatives at risk remains legally unclear. In case of a ‘neither avoidable nor treatable’ genetic disease, geneticists should also refrain from actively informing relatives as the justifiable state of emergency does not permit to break the duty of confidentiality.
]]>This response to their article argues that basing discussions surrounding this important topic on a single bioethical concept does not address the needs of this cohort and is restrictively siloed. The discussion should include considerations of human rights and the need for legislative reforms to address social conditions, in addition to traditional bioethical principles. Work in this area needs to become interdisciplinary and collaborative as well as integrate input from the patients themselves. The concept of the dignity of these patients, in its broadest sense, needs to be infused into the discussion in order to optimise the exploration for solutions for this cohort.
The stance of MAiD as harm reduction, in this context, does not meet the definition of harm reduction, nor does it represent a commitment to the best interests of these patients.
]]>Research using data from medical care promises to advance medical science and improve healthcare. Academia is not the only sector that expects such research to be of great benefit. The research-based health industry is also interested in so-called ‘real-world’ health data to develop new drugs, medical technologies or data-based health applications. While access to medical data is handled very differently in different countries, and some empirical data suggest people are uncomfortable with the idea of companies accessing health information, this paper aims to advance the ethical debate about secondary use of medical data generated in the public healthcare sector by for-profit companies for medical research (ReuseForPro).
We first clarify some basic concepts and our ethical-normative approach, then discuss and ethically evaluate potential claims and interests of relevant stakeholders: patients as data subjects in the public healthcare system, for-profit companies, the public, and physicians and their healthcare institutions. Finally, we address the tensions between legitimate claims of different stakeholders in order to suggest conditions that might ensure ethically sound ReuseForPro.
We conclude that there are good reasons to grant for-profit companies access to medical data if they meet certain conditions: among others they need to respect patients’ informational rights and their actions need to be compatible with the public’s interest in health benefit from ReuseForPro.
Second, should MAiD be available to people in such circumstances, even when a sound argument can be made that the agents in question are autonomous? In response, we use a harm reduction approach, arguing that even though such decisions are tragic, MAiD should be available. Our argument engages with relational theories of autonomy as well as recent criticism raised against them and is intended to be general in application, although it emerges in response to the Canadian legal regimen around MAiD, with a focus on recent changes in Canada’s eligibility criteria to qualify for MAiD.
]]>I argue against this normative moral framing of clinician and state involvement in non-sexual reproduction, suggesting that clinician and state join the non-sexual reproductive project at the point of triggering conception. Begetting a child is more than just the provision and regulation of healthcare; it generates rights and confers responsibilities on all who join this morally significant project. All who collaborate have the right to join or refuse to join the project. I suggest this is intuitively understood in the sexual realm, but not in the non-sexual realm. My key substantive claim is that non-sexual reproduction is a pluralist pursuit that morally implicates more than the genetic and gestational contributors. I find that while the moral basis of a clinician or the state’s right to refuse to join the ART project is the same as for those providing gestational or genetic input, the reasons that morally underpin their refusal differs.
]]>There is a growing concern about artificial intelligence (AI) applications in healthcare that can disadvantage already under-represented and marginalised groups (eg, based on gender or race).
Our objectives are to canvas the range of strategies stakeholders endorse in attempting to mitigate algorithmic bias, and to consider the ethical question of responsibility for algorithmic bias.
The study involves in-depth, semistructured interviews with healthcare workers, screening programme managers, consumer health representatives, regulators, data scientists and developers.
Findings reveal considerable divergent views on three key issues. First, views on whether bias is a problem in healthcare AI varied, with most participants agreeing bias is a problem (which we call the bias-critical view), a small number believing the opposite (the bias-denial view), and some arguing that the benefits of AI outweigh any harms or wrongs arising from the bias problem (the bias-apologist view). Second, there was a disagreement on the strategies to mitigate bias, and who is responsible for such strategies. Finally, there were divergent views on whether to include or exclude sociocultural identifiers (eg, race, ethnicity or gender-diverse identities) in the development of AI as a way to mitigate bias.
Based on the views of participants, we set out responses that stakeholders might pursue, including greater interdisciplinary collaboration, tailored stakeholder engagement activities, empirical studies to understand algorithmic bias and strategies to modify dominant approaches in AI development such as the use of participatory methods, and increased diversity and inclusion in research teams and research participant recruitment and selection.
I also highlight a significant conceptual inconsistency in the literature. On one hand, there is broad consensus that reproductive rights are predominantly negative, yet access to fertility treatment is framed as a component of the right. This wrongly contorts the negative nature of reproductive rights into a positive claim-right to ART. I conclude that this mistakenly frames ART access as sitting within the scope of reproductive freedom. I offer a revised conceptual paradigm of reproductive rights that has important clinical and policy implications for the provision and regulation of ART.
]]>Informal mHealth is widely used by community health nurses in Ghana to extend healthcare delivery services to clients who otherwise might have been excluded from formal health systems or would experience significant barriers in their quest to access formal health services. The nurses use their private mobile phones or devices to make calls to their clients, health volunteers, colleagues or superiors. These phone calls are also reciprocal in nature. Besides, the parties exchange or share other health data and information through text messages, pictures, videos or voice clips. There are some ethical dimensions that are inherent in these practices that ought to be critically scrutinised by bioethicists.
The author has argued in this paper that informal mHealth at large scale adoption in Ghana is associated with some bioethical challenges.
This essay was largely based on an analysis of an empirical study published by Hampshire et al in 2021 on the use of informal mHealth methods in Ghana.
Widespread adoption of Informal mHealth in Ghana is associated with privacy invasion of both the nurses and their clients, breaches confidentiality of the parties, discredits the validity of informed consent processes and may predispose the nurses to some other significant aggregated harms.
The author affirms his partial support for a formalised adoption process of informal mHealth in Ghana but has reiterated that the current ethical challenges associated with informal mHealth in Ghana cannot escape all the debilitating bioethical challenges, even if it is formalised.