Autonomous Choice Research Articles

Autonomy and prevention: From conflicting to complementary aims of prenatal screening.

From an ethical point of view, there is an important distinction between two types of prenatal screening. The first of these targets maternal or foetal conditions (e.g., infectious diseases, blood group sensitization) where early detection allows for interventions that improve the chances of a healthy pregnancy outcome. The second screens for foetal conditions such as Down syndrome, where a timely diagnosis in most cases only allows for a choice between preparation for a child with special needs or termination of the pregnancy. Whereas the former makes an easy fit with the prevention aim of most other population screening programmes, the latter does not. In order to steer clear from a possible eugenic reading of its aim, a wide international consensus has emerged for the view that prenatal screening of this type should have the atypical aim of helping women (couples) to make autonomous reproductive choices, rather than reducing the birth prevalence of the relevant disorders. However, keeping these types of prenatal screening apart may become increasingly difficult given the development of tests, such as the Non-Invasive Prenatal Test, which cannot only be used for both types of screening but may also lead to interconnected findings on both sides of the divide. This makes it an urgent question: What the aim or aims of this new hybrid screening should be? As neither 'prevention' nor 'autonomy' will do, we argue for a normative framework that gives both aims their due, while recognizing the tensions between them.

In Defense of "Physician-Assisted Suicide": Toward (and Back to) a Transparent, Destigmatizing Debate.

Many bioethicists have recently shifted from using "physician-assisted suicide" (PAS) to "medical aid-in-dying" (MAID) to refer to the act of voluntarily hastening one's death with the assistance of a medical provider. This shift was made to obscure the practice's connection to "suicide." However, as the charge of "suicide" is fundamental to arguments against the practice, "MAID" can only be used by its proponents. The result has been the fragmentation of the bioethical debate. By highlighting the role of human agency-as opposed to natural processes-in causing death, the term "PAS" makes it easier both to perceive potential risks to vulnerable populations and to affirm suicide as a potentially autonomous choice. As such, "PAS" thus more transparently expresses the arguments of both supporters and opponents of the "right to die," while avoiding the unnecessary stigmatization of suicide and suicidal people which is a result of the usage of "MAID."

Drifting Away from the Roots: Genderfluidity as Diola’s Mangrove Fishing Strategies in Three Island-Villages of Northern Guinea-Bissau

AbstractBiodiversity loss, habitat degradation, globalization, and societal transformations are challenging rural, and especially coastal communities in Guinea-Bissau where mangrove-dependent livelihoods are exposed to increased vulnerability. The Diola, traditional farmer-fishermen of the northern island-villages, have witnessed swift societal changes following the country’s economic liberalization, climate change, and youth migration from rural areas. Despite historically being a secondary subsistence activity with more predefined gender roles rooted in tradition, mangrove fishing has become a major source of cash income. Yet, women’s mangrove fishing contributions are still overlooked, resulting in general assumptions of static female fishing identities with limited control over their income. We present three case studies of Diola women’s involvement in mangrove fishing through a mixed method approach that combines qualitative techniques and household surveys conducted between 2017 and 2023. Specifically, we explore: (1) diverging societal coping strategies and livelihood developments in three Diola villages; (2) the primary drivers behind village-specific societal transformations; (3) social dynamics and female roles in mangrove fishing-related activities and village decision-making; and (4) the political ecology of interventions. Our findings underscore the complexity of gender-fluid small-scale fishing strategies as female roles beyond fish trade defy cultural generalizations. Contemporary Diola women make autonomous personal and work choices that meet their current needs and add to their household budget to face new welfare demands. Inclusive resource governance needs more gender-specific data for meaningfully implemented interventions adapted to local circumstances, enabling an active participation of all genders in conservation practices and development.

Transcending failure: A study on the “failed domestication” of online news for young visually impaired people in China

Drawing on the triple articulation framework, this study explores the “failed domestication” of online news consumption among young visually impaired people (YVIP), focusing on technological objects, symbolic environments, and individual texts. The findings suggest that “failed domestication” is not merely a consequence of limitations in technical design or social contexts but rather the result of “negotiation” between individuals and media. YVIP develop unique media usage strategies by simplifying operational procedures, foregoing updates, filtering out news irrelevant to their daily lives, and personalizing their interpretation of texts. In contrast to the notion of “failure” rooted in ableism, these behaviors reflect a deep understanding by the visually impaired of their capabilities and specific needs, constituting a form of “alternative success.” The use of digital media by people with disabilities is a process of autonomous choice rather than the “enforcing normalcy.” Therefore, this study advocates for creating a more flexible and human-centric media ecosystem that enables people with disabilities to choose appropriate media usage patterns based on their individual needs and preferences, thus promoting genuine digital inclusivity.

Informed consent in the age of smart technologies

Technology is increasingly being brought into the home care of older people. Digitalization is seen as an enabler for efficient and resource-saving operations. In the use of technology, informed consent is considered an ethical practice and part of a responsible home care service system. The aim of this article is to describe the problem of informed consent in situations where emerging technologies, such as artificial intelligence (AI) and mass data, are used as part of welfare services and home care for older people. The article discusses principles and ways to better integrate informed consent as an ethical practice into a responsible home care service system. A qualitative study was carried out to gather the views of experts in the field of elderly care and ethics. A content analysis of a semi-structured focus group was used to explore perceptions of the changing nature of informed consent. According to our findings, the informed consent model requires updating. The key is to embrace the idea that consent is a living process designed to respect people's autonomous choices and protect them from risk. If the nature of the use of the data collected from individuals changes significantly in the future, the consent should also be updated to reflect this change. This aspect is important because new technologies will change the nature of the collection and use of the data. Mass data collection combines multiple databases so that the resulting data can be used even far from the original purpose or context in which it was collected. Therefore, consent should always be tailored to the context, allowing sufficient time for the person seeking and giving consent to clarify the content of the consent. This process highlights the importance of understanding the agency of the consent giver.

Oocyte donors' experience and expectations in a non-profit fertility care setting.

In this survey, we aimed to provide the description of previous oocyte donors' profile in a Belgian tertiary fertility hospital clinic. The research question is as follows: could certain aspects be changed or improved, according to previous oocyte donors? The final purpose is to boost adherence to future oocyte donation (OD) programs, given the large gap between supply and demand. We set up an observational cross-sectional study of oocyte donors who were recruited in a tertiary referral hospital. Participants were asked to join an anonymous online survey with questions about demographic and reproductive variables, reasons to start or discontinue OD, satisfaction rate, experience, and attitude towards presumed anonymity. A total of 218 women were eligible to join the study, with a response rate of 49% (108/218). The emerging profile of the oocyte donor is a well-educated (102/108 with at least a high school degree), employed (86/108) woman in her thirties. Altruism and solidarity were the main drivers of their choice (105/108), and a general permissive attitude towards disclosure of their personal information to the recipient (60/108) was registered. In case of negative experience or discontinuation, concerns regarding pain management and specific long-lasting psychological support were expressed (8/20). Our findings suggest the need to improve pain relief and to offer psychological support even beyond ending the donation process. These interventions could improve both participation and adherence to OD programs, ensuring an autonomous and free choice while avoiding any risk of exploitation.

Stabilizing financial networks via mergers and acquisitions

A bi-level model is proposed to explore efficient policies for supporting negotiations on financial crisis resolution. In a principal–agent framework, this model minimizes the welfare loss function of a central authority (social planner, SP) through the simultaneous choice of subsidy levels and potential pairs of banks to merge. The SP’s choice of mergers needs to be incentive-compatible with the autonomous choices of banks, and the evaluation of the financial network must adhere to standard accounting principles. Incentive compatibility is enforced by two options for conditions, based on stable matching or competitive bidding. For the evaluation of the financial network, we employ an extended Eisenberg-Noe clearing payment equilibrium by considering bankruptcy costs and the seniority levels of liabilities. Additionally, liabilities are not cleared among solvent banks, and corporate bonds may be used for clearing payments. The bi-level model specifies conditions for the clearing equilibrium. For demonstration, we use major European banks, and a scenario linked to the adverse economic conditions used in the 2016 EU-wide stress testing.

‘Living-alone’ wanghong: Women’s singleness as a wanghong genre and the configuration of Chinese postfeminist wanghong culture

In this article, I explore how women’s singleness is represented by ‘living-alone’ wanghong on the Chinese social media platform Xiaohongshu (小红书) and discuss the configuration of Chinese postfeminist wanghong culture. The term ‘“living-alone” wanghong’ refers to a group of Chinese vloggers – mostly women – who showcase their daily lives in domestic spaces while living by themselves. ‘Living-alone’ wanghong narrate their singleness as an autonomous choice that leads to a happy, high-quality, and bourgeois life. This narrative is distinct from the stigmatised ‘ shengnü’ (剩女, leftover women) discourse in contemporary urban China. By conducting thematic analysis of 50 sampled ‘living-alone’ vlogs featuring female wanghong, I examine three recurring themes: economic independence; self-care/self-discipline; and enjoyable loneliness. The analysis contextualises these three tropes in the postfeminist wanghong culture on Chinese social media. I argue that while ‘living-alone’ wanghong productively challenge stigmas around single women in the context of urban China, they ultimately transform women’s singleness into a neoliberal and postfeminist object in feminised consumer culture. Within their narratives, the structural struggles that single women face become issues that can and should be resolved by individual women. This transformation overshadows the underlying logic of consumption/commercialisation within Chinese postfeminist wanghong culture. This article further discusses the importance of the intersectional gender dimension in wanghong studies, as evidenced by the case study of ‘living-alone’ wanghong.

Gender Ideology and Women's Autonomy in Colleen Hoover's Regretting You

This study investigates the issue of women's autonomy through Colleen Hoover's novel Regretting You. With MacKinnon's dominance theory as a tool, this research paper explores the impact of patriarchal societal norms on power dynamics between men and women. The study's objective is to examine how gender ideology shapes women's choices without their awareness. By investigating the consequences of these norms, this study aims to focus on how sexual dominance inhibits female autonomy. The study employs a qualitative research method, specifically close textual analysis with thematic coding, to identify recurring motifs and character archetypes. Through this approach, the study examines how the novel portrays women as oppressed, victimized, and objectified within the dominant cultural discourse. The findings of the study indicate that internalized patriarchal norms have a significant influence on female characters' attitudes towards domestic violence. Ultimately, this study emphasizes how systemic oppression impedes women's ability to make autonomous choices and underscores the importance of addressing issues such as domestic violence and sexual domination through the experiences of female characters.

Research on External Manifestation of Character Existentialism in Chinese Animation in the New Media Era - Taking The Outcast, Killer Seven and Incarnation as Examples

Existentialism, after over a century of development, has evolved from a philosophical idea into a way of life. In recent years, a group known as "refined egoists" has emerged in both reality and animated works. The appearance of these extreme existentialists who ignore social responsibility reveals that in this era of transition between old and new ideologies, existentialist thought has awakened in people's value systems. This article intends to analyze the external manifestations of character’s existentialism in animation works to summarize the reflections of objective phenomena in reality and to discuss the contradictions and problems that the current young generation are facing between themselves and society. This article uses qualitative research methods to analyze representative characters from three animated series, The Outcast, Killer Seven, and Incarnation, and uses a thematic analysis method that combines existentialism theory to summarize the external manifestations of characters in terms of their internal conflicts, conflicts between individuals, and conflicts between individuals and society. These manifestations include the denial of determinism, affirmation of subjectivity under relative justice, identification with minority groups, denial of authority, and autonomous choice of values. Young generation people are confronted with unprecedentedly great uncertainty and insecurity brought about by the freedom of choice, as well as the social reality of the gradual awakening of existentialist consciousness in contemporary society.

Anticipatory declarations in obstetric care: a relational and spatial examination of patient empowerment, institutional impacts and temporal challenges.

Seeking an anticipatory declaration from the Court of Protection (CoP) to manage a risk of future loss of capacity in pregnant people during labour and delivery appears to be occurring more frequently. This article examines a growing case sample of recent CoP judgments in which anticipatory declarations have been sought and adopts a combined relational and spatial approach to question whether these types of anticipatory declarations empower patient autonomous choice, and to illuminate the complex web of relational, spatial, and temporal factors that hold influence over the way in which mental capacity law operates. Viewing such processes from both a patient and institutional perspective offers useful insights into the law's normative workings, boundaries, and constraints, and ultimately points to conclusions on the (in)effectiveness of anticipatory declarations as a legal mechanism for dealing with the risk of a patient losing capacity in the future. Moreover, however, taking a broader, spatial view signals the challenges posed by these cases to mental capacity legislation itself. The justifiability of the binary construct of capacity/incapacity has been challenged by some writers in this field, and this article offers further reflection on the integrity of this binary through its discussion of anticipatory orders for pregnant people.

Dynamic consent: a royal road to research consent?

In recent years, the principle of informed consent has come under significant pressure with the rise of biobanks and data infrastructures for medical research. Study-specific consent is unfeasible in the...

Readability and Comprehension of Anesthesia Informed Consent Forms in a Spanish County Hospital: An Observational Study.

(1) Background: The wording of informed consent forms could hinder their comprehension and hinder patients' autonomous choice. The objective of this study was to analyze the readability and comprehension of anesthesia informed consent forms in a Spanish county hospital. (2) Methods: Descriptive and cross-sectional study carried out on patients who were going to undergo anesthetic techniques. The readability of the forms was analyzed using the INFLESZ tool and their subjective comprehension using an ad hoc questionnaire. (3) Results: The analyzed forms presented a "somewhat difficult" legibility. A total of 44.2% of the patients decided not to read the form, mainly because they had previously undergone surgery with the same anesthetic technique. The language used in the forms was considered inadequate by 49.5% of the patients and 53.3% did not comprehend it in its entirety. A statistically significant negative correlation of age and INFLESZ readability score with the overall questionnaire score was found. A statistically significant association was observed as a function of age and educational level with the different criteria of the questionnaire. (4) Conclusions: The anesthesia informed consent forms presented low readability with limited comprehension. It would be necessary to improve their wording to favor comprehension and to guarantee patients' freedom of choice.

Assisted suicide in persons with mental disorders: a review of clinical-ethical arguments and recommendations.

Persons with mental disorders have the same right to self-determination as patients with somatic diseases, also regarding death and dying. However, there are several challenges that render persons with mental disorders especially vulnerable to inappropriate conduct of assisted suicide: their wish to die may be a symptom of their mental disease and not an autonomous choice, decision-making competence may be compromised by their illness and more difficult to assess, the severity of suffering may be more difficult to evaluate from an external perspective, the wish to die may be more variable over time and the prognostic uncertainty in mental illness makes it more difficult to determine whether the severe suffering is, in fact, treatment-resistant. After reviewing the clinical and ethical background of assisted suicide in persons with mental disorders, we assess each of these challenges to a medically and ethically justified practice of assisted suicide in mentally ill persons, based on relevant clinical and ethical literature. We conclude that the only ethically valid argument to exclude persons with mental disorders from suicide assistance is their potential inability to make a free, autonomous decision. However, the mentioned challenges should be taken into account in evaluating a person's request for assisted suicide and for promoting her well-informed and deliberated decision-making. In addition to assessing the person's decision-making capacity, the evaluation process should be guided by the goal to empower the person to make an autonomous choice between the available options. We conclude the paper with perspectives for a clinically and ethically justified practice of evaluating requests for assisted suicide in persons with mental disorders.

Let me decide: Increasing user autonomy increases recommendation acceptance

The use of algorithm assistance for decision making is vastly increasing in recent years, largely in online settings wherein users receive advice from recommendation systems. Despite the prevalence of such augmented decision making, users sometimes demonstrate aversion toward algorithms and even reject the recommendations of highly accurate systems. Research in behavioral decision making on the one hand, and in information systems on the other, has yet to fully comprehend these phenomena. We build on insight from these two research streams, as well as from self-determination theory, in identifying the psychological need for autonomy as a driver of decreasing algorithm aversion and increasing recommendation acceptance. We identify two concrete autonomy mechanisms—choice autonomy and control autonomy—which may increase the willingness of users to accept algorithmic recommendations. In three online experiments, simulating the process of selecting a vacation package, we consistently find that showing users multiple recommendations instead of a single recommendation, thereby increasing their choice autonomy, significantly increases recommendation acceptance, both when the system is perfectly accurate (Study 1) and when it is not (Studies 2 and 3). Furthermore, we find in Study 3 that allowing users control over whether they receive single or multiple recommendations, thereby increasing their control autonomy, has a positive moderating effect on the relationship between choice autonomy and recommendation acceptance, suggesting a complementarity between the two autonomy mechanisms. In so doing, we provide theoretical grounding and empirical evidence for the positive consequences of increasing user autonomy on the effectiveness of recommendation systems.

Toward a person-centered ethics framework for autonomy in spinal cord injury research and rehabilitation.

In this paper, we explore how the concepts of autonomy and autonomous choice are understood in the context of spinal cord injury in the academic literature, both in reporting on research results and more broadly on outcomes and quality of life. We find inconsistent, framework-absent portrayals of autonomy as well as an absence of discourse that draws upon ethical constructs and theory. In response, we advance a person-centered framework for spinal cord injury research that combines both lived experience and a disability ethics approach to fill this gap.

Working through the body in metacognitive interpersonal therapy to change relational patterns in dependent personality disorder: The case of Lia.

Persons with dependent personality disorder (DPD) have difficulties describing their inner world, and in realizing their negative ideas about the self, such as being weak, unworthy or powerless are just ideas. As a consequence, they tend to over-rely on others and may lose control over their emotions. Treating these persons can gain benefits from including body-focused techniques as they can promote a) awareness of internal states, b) better emotion regulation, c) the capacity to consider their negative ideas about themselves as not necessarily true, and d) gain power of and agency. We will describe the therapist used body-focused techniques in the context of Metacognitive Interpersonal Therapy when treating Lia, a 40-year-old woman suffering from DPD who also suffered from generalized anxiety disorder and had difficulties in making autonomous choices. She had a romantic relationship with a man she described as distant and judgmental so she felt lonely and not entitled to express her discomfort or capable to break up. The therapist used body-focused techniques, together with behavioural exposure, mindfulness and guided imagery, to let Lia be more aware of her thoughts and feelings, and then to regulate affects and realize she had previously capacities. At therapy termination anxiety diminished and she could break up with the partner and start a new one where she felt free to express herself. We suggest how bodily-focused techniques can be used to enhance therapy effectiveness in DPD.

Understanding the user perception of digital nudging in platform interface design

AbstractGiven the nascent understanding of user perceptions toward digital nudges in e-commerce, our study examines key factors: perceived usefulness, ease of use, trust, and privacy risks. Via an online experiment of 273 participants, we examined the influence of digital nudging interventions – social norms, defaults, and scarcity warnings – against a control group. Employing descriptive and inferential statistics, notable trust variations were found between default and scarcity warning groups versus controls. To assess these findings, we interviewed 11 information systems and psychology experts. This research enriches our understanding of digital nudges in e-commerce and provides design insights. Theoretical implications span from providing propositions in order to enhance user involvement, conducting narrative accompanying research, analyzing diverse time points of nudging. Practical implications focus on emphasizing to users their choice autonomy and the highlighting that defaults and scarcity warnings are designed to mitigate inherent heuristics and biases for combining nudging with boosting elements.

Comparative study on informed consent regulation in health care among Italy, France, United Kingdom, Nordic Countries, Germany, and Spain

The information and subsequent expression of will, so-called informed consent, have become the essential element of health right, understood as the right to autonomous choice in health, based on the fiduciary relationship between physician and patient. This gradually leads European Countries to adopt special legislations and to issue frequent judgments on the subject. However, new challenges in daily clinical practice call for further study of legal solutions. The authors analyse and compare the regulations on informed consent in health care of Italy, France, the United Kingdom, the Nordic Countries, Germany, and Spain. The health and legal contexts, existence of special regulations on informed consent and their characteristics are discussed. Informed consent resulted a mandatory requirement. Clear communication about treatment, therapeutic alternatives, and major risks, discussed in conversation, but preferably documented in writing, are agreed upon. The possibility of dissent and withdrawal of consent are also included. There is a growing interest in involving and regulating the entire health team in information and consent. Lowering the age of consent for minors or analysing the maturity of minors are attempts to increase their participation in health decisions. On another side, the protection of adult incapables persons requires greater involvement of family and fiduciaries to better adapt to changing health needs. Health policy must take responsibility for training health professionals and citizens about the value of health information and communication as a shared choice in care planning, to strengthen the bond of trust with the healthcare system and users.

Important issues in proposing autonomy training in home parenteral nutrition for short bowel syndrome patients: a qualitative insight from the patients' perspectives.

The standard treatment for short bowel syndrome is home parenteral nutrition. Patients' strict adherence to protocols is essential to decrease the risk of complications such as infection or catheter thrombosis. Patient training can even result in complete autonomy in daily care. However, some patients cannot or do not want too much responsibility. However, doctors often encourage them to acquire these skills. Based on qualitative investigations with patients, we wanted to document issues of importance concerning perceptions of autonomy in daily care. Semistructured interviews were conducted with 13 adult patients treated by home parenteral nutrition using a maximum variation sampling strategy. We proceeded to a thematic analysis following an inductive approach. After achieving clinical management of symptoms, a good quality of life is within the realm of possibility for short bowel syndrome patients with home parenteral nutrition. In this context, achieving autonomy in home parenteral nutrition could be a lever to sustain patients' quality of life by providing better life control. However, counterintuitively, not all patients aim at reducing constraints by reaching autonomy in home parenteral nutrition. First, they appreciate the social contact with the nurses, which is particularly true among patients who live alone. Second, they can feel safer with the nurse's visits. Regaining freedom was the main motivation for patients in the training program and the main benefit for those who were already autonomous. Medical teams should consider patients' health locus of control (internal or external) for disease management to support them concerning the choice of autonomy in daily care for parenteral nutrition.