Journal of Medical Ethics最新文献

Singapore, a highly affluent island city-state located in Southeast Asia, has increasingly leveraged new assisted reproductive technologies (ART) to overcome its dismal fertility rates in recent years. A new frontier in ART is preimplantation genetic testing (PGT) for polygenic risk scores (PRS) to predict complex multifactorial traits in IVF (in vitro fertilisation) embryos, such as type 2 diabetes, cardiovascular diseases and various other characteristics like height, intelligence quotient (IQ), hair and eye colour. Unlike well-known safety risks with human genome editing, there are negligible risks with PGT-P, because there are no man-made genetic modifications that can be transmitted to future generations. Nevertheless, the current efficacy of using PGT-P to select IVF embryos for either increased or decreased probability of developing specific polygenic traits is still far from certain. Hence, the regulatory safeguards proposed here will be based on the assumption that the efficacy of this new technology platform has already been validated. These include: (1) restricting the application of PGT-P only for prevention of clinically relevant polygenic disease traits, (2) securely blocking patients' access to the raw genomic DNA sequencing data of their IVF embryos, (3) validating diagnosis of polygenic disease traits in the prospective parents/grandparents of IVF embryos, and restricting PGT-P only for preventing specifically diagnosed polygenic disease traits and (4) mandating rigorous and comprehensive genetic counselling for IVF patients considering PGT-P. There is an urgent and dire need to prevent abuse of the PGT-P technique, as well as protect the interests and welfare of patients if its clinical application is to be permitted in the country.

The ageing of the global population prompts many countries to appropriately allocate healthcare resources that ensure adequate elder care. Nevertheless, the shortages in and burdens of professional care continue to persist. Assistive and remote monitoring technologies for home-use support professional carers in providing care to older persons. With secondary analyses of semistructured interviews with 27 older persons and 23 professional carers in Switzerland, we examined their reasons and expectations for accepting or rejecting technologies in elder care contextualised by their moral outlooks on care, life, death and the deterioration from age. Whereas some appreciate the opportunities for greater safety and reassurance from technologies, others may see the alerts as burdensome and the interventions superfluous. We argue that dissatisfaction in professional care may result from a misalignment of the subjective values between the carer and older person. This may exacerbate the problem of appropriate care provision and disrupt the potential of technologies to benefit older persons. An ideal caregiving arrangement may be found when their values do align. We argue that there exists intrinsic value to finding an alignment using the capabilities approach, followed by reflections on autonomy and privacy. Recommendations are offered to practically enable this alignment, with limits set to ensure adequate access to care. With the increasing enthusiasm for technical solutions in professional elder care, this paper contributes a novel perspective by presenting two reasons for inefficiencies in reducing care burdens that are linked to the alignment of core moral outlooks and the realisation of capabilities.

The global allocation of vaccines during the COVID-19 pandemic is widely perceived as unfair. Priority was given to countries that paid the most with little or no concern for who needed the vaccines the most. No satisfactory institutions have been established to allocate vaccines in a future pandemic. In this paper, we join reformers in proposing a new scheme for vaccine distribution: a global auction for vaccines where profits are distributed fairly to participating countries. Our proposal improves upon previous suggestions morally by taking countries' differing valuations of money and vaccines seriously. Since an auction is in the interest of both vaccine manufacturers and high-income countries, it is also politically feasible. A global redistributive auction for vaccines thus promises to be a robust and morally desirable way to allocate vaccines.

The right to informed consent is a core ethical principle. Recent audits of patient information leaflets about electroconvulsive therapy (ECT), in Australia, England, Northern Ireland, Scotland and Wales, suggest that this principle is often not implemented, with efficacy being exaggerated and risks minimised. In the current study a convenience sample of 858 ECT recipients and 286 family members and friends, from 44 countries, responded to an online survey about their experiences of ECT, including the information they recall being given to them before ECT. Most (59%) of the ECT recipients reported that they had not been given 'adequate information' and a further 17% were 'not sure'. For example, 63% of recipients recall being told that 'ECT can cause temporary memory problems', but only 17% that 'ECT can cause long-term or permanent memory problems, 12% that 'ECT can cause heart problems' and 28% that there are 'Risks from repeated general anaesthesia'. There were higher levels of recalling being told about definite benefits, even though some of these benefits are disputed. When asked to consider a list of items of misinformation, many recipients and relatives reported being told 'Depression is caused by a chemical imbalance in the brain' (58% and 53%, respectively) and 'ECT corrects chemical imbalance or other brain abnormality' (42% and 41%). Study limitations include potential sampling issues (eg, self-selection bias, snowball sampling bias, or other barriers to representativeness due to convenience sampling or network-based recruitment), as well as potential recall bias among survey respondents (last ECT treatment was between 1958 and 2024; average=2012.5). Nevertheless, these findings, in conjunction with previous studies, suggest an urgent need for greater efforts to ensure that patients and families are provided with comprehensive, balanced, evidence-based information when deciding whether to have ECT.

In Germany, efforts to reform current legislation governing access to termination of pregnancy (TOP) have recently gained momentum. In 2023, the German Federal Government appointed a 'Commission on Reproductive Self-Determination and Reproductive Medicine', which released recommendations to revise legislation of TOP in April 2024. Currently, TOP is unlawful under the German Criminal Code, with exemptions from punishment for TOP performed within the first 12 weeks of pregnancy following mandatory counselling. Additional exemptions exist in case of criminological or medical-social indications.The Commission report recommends the decriminalisation of early-stage TOP and potential abolition of the mandatory counselling requirement. It further recommends a revision of the medical-social indication, due to a lack of clarity in its interpretation. This indication allows for TOP beyond 12 weeks of pregnancy, where there is danger to the pregnant woman's life or health.This paper provides an overview of Germany's current TOP regulation and the Commission's recommendations, with a particular focus on the ethical and legal challenges posed by the application of the current medical-social indication in cases of fetal anomalies. We argue that while legislative clarity is important, maintaining a broad interpretation of the medical-social indication is crucial to prevent undue restrictions on TOP access at later gestations.The Commission report represents a promising step forward in changes for TOP legislation in Germany, and we welcome its call for legal reform. However, given the outcome of the recent federal election in February 2025, it is unlikely that the revision of TOP legislation will be part of the new government's agenda.

Building a biobank network in developing countries is essential to foster genomic research and precision medicine for patients' benefit. However, there are serious barriers to establishing biobanks in low-income and middle-income countries (LMICs), including Ukraine. Here, we outline key barriers and essential milestones for the successful expansion of biobanks, genomic research and personalised medicine in Ukraine, drawing from the experience of other LMICs. A lack of legal and ethical governance in conjunction with limited awareness about biobanking and community distrust are the principal threats to establishing biobanks. The experiences of LMICs suggest that Ukraine urgently needs national guidelines covering ethical and legal aspects of biospecimen-related research. National guidelines must be consistent with international ethical recommendations for safeguarding participants' rights, welfare and privacy. Additionally, efforts to educate and engage physicians and patient communities are essential for achieving biobanking goals and benefits for precision medicine and future patients.

Given that only a small fraction of patients with cancer exhibits specific markers making them eligible for effective targeted therapies, this paper investigates the justification of treating cancer differently in terms of resource allocation when it comes to the application of novel precise therapies-the so-called onco-exceptionalism. Specifically, it assesses whether the reimbursement of expensive drugs is equitable. To do so, we first contextualise healthcare resource allocation concerning immunotherapeutic treatments for cancer, then explore arguments for and against onco-exceptionalism and finally conclude by advocating for a proactive health approach.