In this paper, we make the case that a person who is considering or has already made a decision that appears seriously harmful to that person should in some cases be judged incapable of making that...

Incidental findings and secondary findings, being results that are unrelated to the diagnostic question, are the subject of an important debate in the practice of clinical genomic medicine. Arguments for reporting these results or not doing so typically relate to the principles of autonomy, non-maleficence and beneficence. However, these principles frequently conflict and are insufficient by themselves to come to a conclusion. This study investigates empirically how ethical principles are considered when actually reporting IFs or SFs and how value conflicts (...) are weighed. A qualitative focus group study has been undertaken, including a multidisciplinary group of professionals from Belgian centres for medical genetics. The data were analysed thematically. All eight Belgian centres participated in this study. Ethical values were frequently referred to for disclosure policies on IFs and SFs. Participants invoked respect for patient autonomy to support the disclosure of IFs and opt-out options for IFs and SFs, non-maleficence for the professional delineation of reportable IFs and opt-out options for IFs and SFs and beneficence for the mandatory reporting of actionable IFs, the delineation of reportable IFs and a current decline of actively pursued SFs. Professional assumptions about patients’ genetic literacy were an important factor in the weighing of values. In line with the traditional bioethical discourse, the mandatory reporting of actionable IFs might be interpreted as a “technological, soft paternalism”. Restricting patients’ choices might be acceptable, but then its motives should be valid and its beneficent outcomes highly plausible. Hence, the presuppositions of technological, soft paternalism - patients’ inability to make informed decisions, normative rationality, the efficacy of beneficent outcomes and the delineated spectrum of beneficence - should be approached critically. Moreover, distributive justice should be considered an important value in the delineation of the current scope of the ethical debate on IFs and SFs. This study of guiding values may stimulate the debate on the ethical grounds for a solid policy on IFs and SFs internationally. (shrink)

In the realm of medical ethics, the foundational principle of respecting patient autonomy holds significant importance, often emerging as a central concern in numerous ethically complex cases, as authorizing medical assistance in dying or healthy limb amputation on patient request. Even though advocates for either alternative regularly utilize prima facie principles to resolve ethical dilemmas, the interplay between these principles is often the core of the theoretical frameworks. As the ramifications of the sustainability crisis become increasingly evident, there is a (...) growing need to integrate awareness for sustainability into medical decision-making, thus reintroducing potential conflict with patient autonomy. The contention of this study is that the ethical standards established in the 20th century may not adequately address the challenges that have arisen in the 21st century. The author suggests an advanced perception of patient autonomy that prioritizes fostering patients’ knowledge, self-awareness, and sense of responsibility, going beyond a sole focus on their intrinsic values. Empowering patients could serve as a tool to align patient autonomy, beneficence, and the aim to reduce resource consumption. (shrink)

The bioethical principle of autonomy is of paramount importance within medical practice. The extent to which a patient’s autonomy overlaps or conflicts with the physician’s duty of beneficence and non-maleficence, however, is not so clear cut, especially for those cases in which the patient’s request for medical intervention goes against the physician’s advice, either because of personal belief or because there is uncertainty regarding the therapeutic approach. Body integrity dysphoria (BID) is a condition that has been included recently in the (...) International Classification of Diseases, 11th edition (ICD-11). It may lead an affected individual to develop an intense desire to remove a specific body part in order to restore congruity between their body and their mind. Thus, its occurrence creates challenging moral and ethical dilemmas for the medical world (Loriga, 2023). The aim of this study was to investigate how Czech physicians understood, assessed and supported patient autonomy regarding requests for invasive body modifications. The objective was to produce a blueprint regarding how much a patient could influence the medical treatment they could gain within the Czech medical system and to develop a comparison with the ethical challenges of BID. A five-section survey was designed and submitted to Czech physicians on topics relevant to the BID debate. On the surface, the results showed an apparent predisposition toward collaboration between doctors and patients. However, further investigation showed that this supposed collaboration crumbled as the physiological risk-reward ratio moved further toward risk, which caused physicians progressively to rely less on the patient’s opinion and psychological needs. Moreover, a strongly authoritarian approach was evident, which became overwhelming in cases of amputation requests and removed, a priori, any collaboration. The results indicate that the Czech medical system does not accept or comprehend fully patients’ psychological needs, and therefore the BID phenomenon is a long way from being understood, which requires a fundamental paradigm shift. (shrink)