Background While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analysis is more likely to identify unsolicited findings (UF) and variants that cannot be classified as benign or disease-causing (variants of uncertain significance; VUS). UF and VUS pose new challenges for genetic health professionals (GHPs) who are obtaining informed consent for genomic sequencing from patients.Methods We conducted semi-structured interviews with 31 GHPs across Europe, Australia (...) and Canada to identify some of these challenges.Results Our results show that GHPs find it difficult to prepare patients to receive results because a vast amount of information is required to fully inform patients about VUS and UF. GHPs also struggle to engage patients – many of whom may be focused on ending their ‘diagnostic odyssey’ – in the informed consent process in a meaningful way. Thus, some questioned how ‘informed’ patients actually are when they agree to undergo clinical genomic sequencing.Conclusions These findings suggest a tension remains between sufficient information provision at the risk of overwhelming the patient and imparting less information at the risk of uninformed decision-making. We suggest that a shift away from ‘fully informed consent’ toward an approach aimed at realizing, as far as possible, the underlying goals that informed consent is meant to promote. (shrink)

Background While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analysis is more likely to identify unsolicited findings (UF) and variants that cannot be classified as benign or disease-causing (variants of uncertain significance; VUS). UF and VUS pose new challenges for genetic health professionals (GHPs) who are obtaining informed consent for genomic sequencing from patients.Methods We conducted semi-structured interviews with 31 GHPs across Europe, Australia (...) and Canada to identify some of these challenges.Results Our results show that GHPs find it difficult to prepare patients to receive results because a vast amount of information is required to fully inform patients about VUS and UF. GHPs also struggle to engage patients – many of whom may be focused on ending their ‘diagnostic odyssey’ – in the informed consent process in a meaningful way. Thus, some questioned how ‘informed’ patients actually are when they agree to undergo clinical genomic sequencing.Conclusions These findings suggest a tension remains between sufficient information provision at the risk of overwhelming the patient and imparting less information at the risk of uninformed decision-making. We suggest that a shift away from ‘fully informed consent’ toward an approach aimed at realizing, as far as possible, the underlying goals that informed consent is meant to promote. (shrink)

Consider that an individual improves her capacities by neuroscientific means. It turns out that, besides altering her in the way(s) she intended, the enhancement also changes her personality in significant way(s) she did not foresee. Yet the person endorses her new self because the neuroenhancement she underwent changed her. Can the person’s approval of her new personality be autonomous? While questions of autonomy have already gathered a significant amount of attention in philosophical literature on human enhancement, the problem just described—henceforth (...) referred to as the question whether selfvalidating neuroenhancement can be autonomous—would not appear to have received due consideration. This article takes a step towards remedying the shortage. I start by explicating the main points of departure of its argument. In the subsequent sections of the article, I consider several possible reasons for deeming self-validating neuroenhancement incompatible with autonomy. On the basis of the consideration, I propose that self-validating neuroenhancement can be autonomous. (shrink)

Specifying the moral demands of respect for the autonomy of people with dementia (PWD) in nursing homes (NHs) remains a challenging conceptual task. These challenges arise primarily because received notions of autonomous decision-making and informed consent do not straightforwardly apply to PWD in NHs. In this paper, I investigate whether, and to what extent, the influential account of autonomous decision-making and informed consent proposed by Beauchamp and Childress has applicability and relevance to PWD in NHs. Despite its otherwise practical orientation (...) and suitability for acute care settings, I identify three problems with this account when applied to PWD in NHs. These problems include (1) intentionality as an all-or-nothing condition of autonomous decision-making, (2) construing consent as one-off authorization, and (3) unresolved ambiguities around the primacy of precedent autonomy over best interest considerations. To address these problems, I propose and defend a number of revisions to Beauchamp and Childress’s account. First, I suggest that we consider intentionality as a non-binary criterion of autonomous decision-making. Second, I argue for a model of process consent to overcome the moral inadequacy of construing consent as one-off authorization in NHs. And, to overcome the third problem, I suggest accounting for both precedent and extant autonomy of PWD, considering mandates of precedent autonomy not as prescriptive but as informative, and drawing a less rigid distinction between autonomy considerations and best interest judgements. I conclude that this revised version of Beauchamp and Childress’s account fares better than the original version in capturing relevant autonomy considerations to care for PWD in NHs. (shrink)

Background: Personal genomic testing (PGT) offers individuals genetic information about relationships, wellness, sporting ability, and health. PGT is increasingly accessible online, including in emerging markets such as Australia. Little is known about what consumers expect from these tests and whether their reflections on testing resonate with bioethics concepts such as autonomy. Methods: We report findings from focus groups and semi-structured interviews that explored attitudes to and experiences of PGT. Focus group participants had little experience with PGT, while interview participants had (...) undergone testing. Recordings were transcribed and analyzed using thematic analysis. Findings were critically interpreted with reference to bioethics scholarship on autonomy. Results: Fifty-six members of the public participated in seven focus groups, and 40 individuals were interviewed separately. Both groups valued the choice of PGT, and believed that it could motivate relevant actions. Focus group themes centered on the perceived value of choices, knowledge enabling action and knowledge about the self. Interview themes suggest that participants reflexively engage with their PGT information to make meaning, and that some appreciate its shortcomings. Critical interpretation of findings shows that while consumers of PGT are able to exercise a degree of autonomy in choosing, they may not be able to achieve a substantive conceptualization of autonomy, one that promotes alignment with higher-order desires. Conclusions: PGT consumers can critically reason about testing. However, they may uncritically accept test results, may not appreciate drawbacks of increased choice, or may overestimate the potential for information to motivate behavioral change. While consumers appear to be capable of substantive autonomy, they do so without ongoing support from companies. PGT companies promote a problematic (“default”) account of autonomy, reliant on empowerment rhetoric. This leaves consumers vulnerable to making decisions inconsistent with their higher-order desires. As PGT expands, claims about its power and value need to be carefully drawn. (shrink)

Disclosure in clinical practice is aimed at promoting patient autonomy, usually culminating in patient choice (e.g., to consent to an operation or not, or between different medications). In medical ethics, there is an implicit background assumption that knowing more about (X) automatically translates to greater, or more genuine, autonomy with respect to one's choices involving (X). I challenge this assumption by arguing that in rare cases, withholding information can promote a patient's autonomy (understood as the capacity for rational choice in (...) alignment with one's values and goals). (shrink)

There is evidence to suggest that some patients who undergo Deep Brain Stimulation can experience changes to dispositional, emotional and behavioural states that play a central role in conceptions of personality, identity, autonomy, authenticity, agency and/or self. For example, some patients undergoing DBS for Parkinson’s Disease have developed hypersexuality, and some have reported increased apathy. Moreover, experimental psychiatric applications of DBS may intentionally seek to elicit changes to the patient’s dispositional, emotional and behavioural states, in so far as dysfunctions in (...) these states may undergird the targeted disorder. Such changes following DBS have been of considerable interest to ethicists, but there is a considerable degree of conflict amongst different parties to this debate about whether DBS really does change PIAAAS, and whether this matters. This paper explores these conflicting views and suggests that we may be able to mediate this conflict by attending more closely to what parties to the debate mean when they invoke the concepts lumped together under the acronym PIAAAS. Drawing on empirical work on patient attitudes, this paper outlines how these different understandings of the concepts incorporated into PIAAAS have been understood in this debate, and how they may relate to other fundamental concepts in medical ethics such as well-being and autonomy. The paper clarifies some key areas of disagreement in this context, and develops proposals for how ethicists might fruitfully contribute to future empirical assessments of apparent changes to PIAAAS following DBS treatment. (shrink)

BackgroundRespect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of ‘relational autonomy’ may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative (...) care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.Main bodyHere, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.ConclusionThis article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices. (shrink)

The Target Article “Non-invasive prenatal testing for ‘non-medical’ traits: ensuring consistency in ethical decision making” by Bowman-Smart et al. (2023) raises the important issue that “decision-...

Caesarean delivery is a common and life-saving intervention. However, it involves an overall increased risk for short-term and long-term complications for both mother and child compared with vaginal delivery. From a medical point of view, healthcare professionals should, therefore, not recommend caesarean sections without any anticipated medical benefit. Consequently, caesarean sections requested by women for maternal reasons can cause conflict between professional recommendations and maternal autonomy. How can we assure ethically justified decisions in the case of caesarean sections on maternal (...) request in healthcare systems that also respect patients’ autonomy and aspire for shared decisions? In the maternal–professional relationship, which can be characterised in terms of reciprocal obligations and rights, women may not be entitled to demand a C-section. Nevertheless, women have a right to respect for their deliberative capacity in the decision-making process. How should we deal with a situation of non-agreement between a woman and healthcare professional when the woman requests a caesarean section in the absence of obvious medical indications? In this paper, we illustrate how the maternal–professional relationship is embedded in a nexus of power, trust and risk that reinforces a structural inferiority for women. To accommodate for beneficial use of power, these decision processes need to be trustworthy. We propose a framework, inspired by Lukes’ three-dimensional notion of power, which serves to facilitate trust and allows for beneficial power in shared processes of decision-making about the delivery mode for women requesting planned C-sections. (shrink)

Reproductive genetic carrier screening is increasingly being offered more widely, including to people with no family history or otherwise elevated chance of having a baby with a genetic condition. There are valid reasons to reject a prevention-focused public health ethics approach to such screening programs. Rejecting the prevention paradigm in this context has led to an emphasis on more individually-focused values of freedom of choice and fostering reproductive autonomy in RCS. We argue, however, that population-wide RCS has sufficient features in (...) common with other public health screening programs that it becomes important also to attend to its public health implications. Not doing so constitutes a failure to address the social conditions that significantly affect people’s capacity to exercise their reproductive autonomy. We discuss how a public health ethics approach to RCS is broader in focus than prevention. We also show that additional values inherent to ethical public health—such as equity and solidarity—are essential to underpin and inform the aims and implementation of reproductive carrier screening programs. (shrink)

The “right not to know” has generated significant discussion, especially regarding genetic information. In this paper, I argue that this purported right is better understood as a preference and that treating it as a substantive right has led to confusion. To support this claim, I present three critiques of the way the right not to know has been characterized. First, I demonstrate that the many conceptualizations of this right have hampered debate. Second, I show that the way autonomy is conceptualized (...) in this literature is also problematic. Third, I examine the notion of a right in more detail, to support my third critique: that the right to know and the right not to know genetic information are often erroneously treated as having equivalent status. On my understanding, the claim being made is better thought of as a preference, not a right, and a preference not to know certain information becomes only one of several considerations relevant to medical decision making. (shrink)