The Cold War Politics of Genetic Research

Abstract While the trade of human organs are illegal and widely condemned, a black market flourishes. Estimates indicate that 10% of kidney transplants from living donors involve illegal payments to the kidney seller. This paper presents a typology for approaches aimed at curtailing the black market in human organs. The policies are evaluated from two perspectives: their ethical permissibility and their expected efficiency in ending and minimizing the trade in human organs. To end or minimize organ trading, we must reduce the organ shortage in order to reduce demand for organs, alleviate poverty to reduce the supply of organs, and disincentivize brokers and medical facilitators through a concerted effort to reduce the profit rate of the international organ trade.

Abstract Children with complex medical conditions including those with severe intellectual disability are living longer. For some, support with medical technology such as Long-Term Ventilation can prolong their lives further. Such technological supports can have significant implications for the child and her family and consume considerable resources though they can also offer real benefits. Sometimes clinicians question whether children with very severe cognitive impairments should have their life prolonged by technology, though they would be prepared to provide the same treatment in equivalent cases without cognitive disability. We describe and analyse four ways in which this view might be justified. Although it could be claimed that children with severe cognitive disability have lives that are not worth living, in most cases this view can and should be rejected. However, the burdens of life-prolonging technology may outweigh the benefits of such treatment either in the present or in the future. Consequently it might not be in their interests to provide such technology, or to ensure that it is provided as part of a time-limited trial. We also consider circumstances where medical technology could offer modest benefits to an individual, but resources are scarce. In the face of resource imitation, treatment may be prioritised to children who stand to benefit the most. This may in some circumstances, justify selectively withholding treatment from some medically complex children.

Abstract The year 2024 marked the 60th anniversary of the World Medical Association’s Declaration of Helsinki (DoH). Coincidentally, the WMA published the 8th revision of this landmark document guiding medical research involving human subjects. One of the key changes in this latest revision concerns the notion of vulnerability, which has always been central to the DoH’s ethos. The term ‘vulnerability’ was explicitly introduced in the 5th revision, published in 2000, which lists five vulnerable groups. Subsequent revisions have significantly altered how vulnerability is portrayed and understood within the document. This article traces the conceptualisation of vulnerability across the various versions of the DoH, culminating in its recently published 8th revision. We explore the underlying principles of each revision and examine how these principles have both influenced and been influenced by broader ethical discourses. Lastly, we address some of the challenges that future revisions must meet to ensure that the document remains internally coherent and practically applicable for researchers and research ethics committees alike.

Abstract This article examines the assessment of mental capacity in the context of euthanasia, particularly when requested by patients with mental illnesses. It proposes a holistic alternative approach to the traditional functional model, arguing that the latter is insufficient to capture the complexity of these patients’ decisions. Using approaches based on narrative, hermeneutic, and dialogical ethics, it offers an evaluation that considers the patient’s life story, values, and context. Shared decision-making and empathy are identified as fundamental components to ensure informed and consensual decisions, promoting an environment of respect and mutual understanding. The article reviews Spanish legislation on euthanasia, highlighting the need to include medical ethics experts in the Guarantee and Evaluation Commissions. These experts provide a comprehensive ethical perspective essential for addressing the ethical complexities in euthanasia requests and ensuring fair decisions that reflect the patient’s true will. It recommends reviewing and expanding current protocols, as well as including continuous ethics training to improve medical practice in this context. The conclusions suggest that an assessment of mental capacity based on ethical principles and an integrated narrative can significantly improve medical practice and decision-making in euthanasia, especially for these patients. Furthermore, the inclusion of ethics experts in the commissions can provide a more humane and just perspective, ensuring that decisions respect the patient’s dignity and autonomy.

Controlled Human Infection Studies (CHIS) involving the deliberate exposure of healthy individuals to infectious agents, are emerging as a valuable tool for medical research. This systematic survey explores the perceptions of ethics committee members from various Indian medical research institutions after participating in a sensitization workshop on CHIS. This cross-sectional study was conducted on the workshop participants through an online survey. The workshop was held in a hybrid mode and around 60 participants from four tertiary care institutions and research institutes had participated. A structured questionnaire was used to assess their evolving perspectives, challenges, and recommendations related to CHIS and the effectiveness of the workshop. Both Likert scale and open-ended items were included in the survey. Responses are presented as percentage and views supported through the quotes from responses. Around 43 participants responded to the survey (72%). Participants acknowledged the potential benefits of CHIS but were concerned about the psychological harm and other risks. Challenges were identified in conducting and reviewing CHIS, including regulatory approvals, risk assessment, and robust informed consent. The need for development of regulatory guidelines, specialized training, risk mitigation strategies, community engagement, and compensation mechanisms were highlighted. The sensitization workshop was considered valuable in enhancing participants' understanding of CHIS, although participants expressed a need for continued training and experience to effectively review such studies. With the Indian Council of Medical Research (ICMR) releasing a policy statement on ethical conduct of CHIS in India, this study provides a foundation for future capacity-building initiatives among ethics committee members. The findings emphasize the significance of ongoing dialogue to standardize the ethical review process for CHIS, thus facilitating their acceptance and realization in India's medical research landscape.

Abstract Patient visitor restrictions were implemented in unprecedented ways during the COVID-19 pandemic and included bans on any visitors to dying patients and bans separating mothers from infants. These were implemented without high quality evidence they would be beneficial and the harms to patients, families and medical personnel were often immediately clear. Evidence has also accumulated finding strict visitor restrictions were accompanied by long-term individual and societal consequences. We highlight numerous examples of restrictions that were enacted during the COVID-19 pandemic, including some that continue to be in place today. We outline six specific concerns about the nature and effects of the visitor restrictions seen during the COVID-19 pandemic. These considerations may help provide both an ethical and science-based framework, through which healthcare workers, families and government entities can work towards safeguarding patient and family rights and well-being.

Abstract Thoracoabdominal normothermic regional perfusion (TA-NRP), a new method of controlled donation after circulatory death, seems to provide more and better organs for patients on organ transplant waiting lists compared to standard controlled donation after circulatory death. Despite its benefits, the ethical permissibility of TA-NRP is currently a highly debated issue. The recent statement published by the American College of Physicians (ACP) highlights the reasons for these debates. Critics’ main concern is that TA-NRP violates the Dead Donor Rule. This paper presents an ethical analysis of the objections raised by the ACP against TA-NRP and argues that TA-NRP is not only morally permissible but also morally required where it is financially and technically feasible. To support this conclusion, the concepts of ‘resuscitation,’ ‘intention,’ ‘irreversibility,’ ‘permanence,’ ‘impossibility,’ and ‘respect’ in the context of TA-NRP are explored. Additionally, the ethical permissibility of this procedure is evaluated through the lenses of Utilitarianism, Kantianism, the core principles of bioethics, and the Doctrine of Double Effect. This ethical analysis demonstrates why the ACP’s objection lacks a solid moral foundation and conflates moral and legal considerations. This paper also argues that extra measures are needed to ensure the moral permissibility of TA-NRP, emphasizing the importance of informed consent, additional brain blood flow and activity monitoring, and a contingency plan to abort the organ procurement process if a sign of morally relevant brain activity is detected.

Healthcare delivery and access, both in the United States and globally, were negatively affected during the entirety of the COVID-19 pandemic. This was particularly true during the first year when countries grappled with high rates of illness and implemented non-pharmaceutical interventions such as stay-at-home orders. Among children with special healthcare needs, research from the United Kingdom (U.K.) has shown that the pandemic response uniquely impacted various aspects of their care, including decreased access to care, delays in diagnosis, and poorer chronic disease control. In response to these findings, and to begin to comprehend whether the concerning findings from the nationalized system of healthcare in the U.K. extend to the highly dissimilar United States (U.S.) healthcare context, we reviewed the literature on alterations in access to and delivery of care during the early stages of the COVID-19 pandemic for children with special healthcare needs in the U.S. We then utilize these findings to consider the ethical and policy considerations of alterations in healthcare provision during pandemics and crisis events in the U.K. and U.S. and make recommendations regarding how the needs of CSHCN should be considered during future responses.

Abstract Antimicrobial resistance has been termed a ‘silent pandemic’, a ‘hidden killer.’ This language might indicate a threat of significant future harm to humans, animals, and the environment from resistant microbes. If that harm is uncertain but serious, the precautionary principle might apply to the issue, and might require taking ‘precautionary measures’ to avert the threat of antimicrobial resistance, including stewardship interventions like antibiotic prescription caps, bans on certain uses in farming sectors, and eliminating over-the-counter uses of antibiotics. The precautionary principle is a useful tool in ethical analyses of antimicrobial stewardship measures, but as I argue in this article, it ought not be used as a standalone tool. The principle considers the magnitude of harms to be averted and those arising from precautionary measures, but—importantly—it does not consider the distribution of those harms. That may raise issues of social justice if the harms of stewardship measures befall already disadvantaged populations. To avoid this blind spot in ethical analysis using the precautionary principle, it ought never be used alone, but rather always alongside justice-considering ethical concepts such as reciprocity, benefit-sharing, or a just transition.

There is currently a pronounced lack of uniformity in the values placed on a life or a QALY by different New Zealand government entities taking actions designed to save lives or QALYs. With some limited exceptions, equity suggests that all QALYs be equally valued, and therefore likewise for all lives with the same residual life expectancy and quality of life. Prima facie, this is attainable by adopting the best (and only credible) New Zealand estimate of the value of life (the NZTA’s $12.5 m value of the life of a median age person in good health), and using that or its QALY equivalent as a cutoff figure to determine interventions throughout the public sector. This provides opportunities for large welfare gains, from curtailing existing interventions that currently use much larger cutoff values (such as earthquake strengthening regulations) and expanding interventions that currently use much smaller cutoff values (such as public health spending). However, the NZTA’s figure is only applicable to small increases in lives saved, and must decline as the number of additional lives saved increases. This relationship should be estimated.

The following text is the de-identified and edited transcript of an invited presentation by Professor Clare Delany on the topic of ‘How clinical ethics discussions can be a model for accommodating and incorporating plural values in paediatric and adult healthcare settings.’ Professor Delany’s presentation formed part of the Conference on Accommodating Plural Values in Healthcare and Healthcare Policy, which was held in Melbourne, Australia, on Monday, October 30, 2023. This conference was a key output of the Australian Research Council Discovery Project grant DP190101597, ‘Religion, pluralism, and healthcare practice: A philosophical assessment’. Professor Delany’s presentation was introduced by Doctor Lauren Notini, Research Fellow and Lecturer at Monash Bioethics Centre, Monash University.

Frail and elderly persons approaching end of life who suffer cardiac arrest are often subject to rigorous, undignified, and inappropriate resuscitation attempts despite poor outcomes. This scoping review aims to investigate how people feel about the appropriateness of CPR in this population. This review was guided by the PRISMA-ScR methodological framework. A search strategy was developed for four online databases (MEDLINE, EMCARE, PSYCHINFO, CINAHL). Two reviewers were utilised for title/abstract screening, full text review and data extraction. Full text, peer reviewed studies were eligible for inclusion which discussed perspectives in the frail and/or elderly population with a focus on cardiopulmonary resuscitation (CPR). The database search yielded 3693 references (MEDLINE n = 1417, EMCARE n = 1505, PSYCHINFO n = 13, CINAHL n = 758). Following removal of duplicates (n = 953), title and abstract screening was performed on 2740 papers. A total of 2634 articles did not meet the inclusion criteria. Twenty-five studies were included in the scoping review and analysed for data extraction. Five themes emerged: (i) Preferences towards CPR, (ii) Preferences against CPR, (iii) Poor knowledge of CPR/Estimated survival rates, (iv) Do Not Resuscitate Orders, and (v) Decisional authority. This scoping review maps and describes the common perspectives shared by CPR stakeholders in the frail/elderly population. Findings revealed CPR decisions are often made based on incorrect knowledge, DNAR orders are frequently underused, CPR decisional authority remains vague and healthcare professionals have mixed views on the appropriateness of CPR in this population.

AbstractWhat is the true significance of biological kinship? During the last decades, it seemed to be uncontroversial that abandoned and even adopted people feel the negative impact of biological parents’ absence throughout life in several ways (Miller et al. 2000; Keyes, Margaret A., Anu Sharma, Irene J Elkins, and William G. Iacono, Matt McGue. 2008. The Mental Health of US Adolescents Adopted in Infancy. Archive Pediatric Adolescense Medicine 162(5): 419–425.). However, in the case of people conceived via “third-party reproduction”, especially in sperm donation, the disruption of the kinship network derived from natural bonds tends to be presented as something irrelevant. This article disputes that assumption, explores its relationship with a deconstructivist vision that presents kinship as a purely social construct and defends the personal and existential value of a person’s biological bonds with her parents. While analysing the anthropological shift inherent to the way some political discourses present the nuclear family and heterologous biotechnology, it proposes renewed philosophical attention on the significance of filiation and human affinity. This article argues for the density of genealogical ties and defends that the consecration of an individual “right to a child”, namely (but not exclusively) through the normalised access to sperm banks, is incompatible with the rights of the child, since it deprives people from knowing not only who but also how is their father.

AbstractIn this paper, I discuss the bioethical principle of justice and the bioethical key concept of vulnerability, in a queer feminist posthuman framework. I situate these contemplations, philosophical by nature, in the context of antimicrobial resistance (AMR), one the most vicious moral problems of our time. Further, I discuss how gender and sexual variance, vulnerability and justice manifest in AMR. I conclude by considering my queer feminist posthuman framework for vulnerability and justice in relation to the notion of antibiotic vulnerabilities, suggesting a lacuna for further AMR research.