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This article describes our efforts to screen and enrol clinical trial participants conscientiously in the COVID-19 pandemic setting. We present the standard screening and enrolment process prior to, and our process of adapting to, the pandemic. Our goal was to develop a way to screen and enrol people for clinical trials that was both equitable and effective. In addition, we outline the steps our research department took to ensure that ethical, clinical and logistical factors were considered when matching a patient to a clinical trial. [ABSTRACT FROM AUTHOR]

Introduction: Social media has transformed how music therapists work, with numerous practitioners utilizing the affordances of social media in music therapy practice. So far, music therapy research has been significantly limited regarding the ethical implications of social media use. A better understanding of the ethics of social media use is needed to inform the continuous evaluation of professional ethical guidelines. Methods: We conducted a systematic text condensation of transcripts from one conversational focus group consisting of five participants with diverse connections to music therapy and social media. Results: The results highlight the many ways social media can facilitate both substantial value as well as serious risk in music therapy practice. Through the analysis, it has also become clear that music therapists must make complex considerations in working with social media to maintain a level of responsible practice. Discussion: This study provides (a) insights and experiences from practice gathered in a conversational focus group, (b) discussions exploring the possible value and risks of social media use in music therapy, and (c) implications for practice including a summary of some ethical reflections. [ABSTRACT FROM AUTHOR]

Simple Summary: To respect the interests of sentient animals, we should consider asking for their consent before using them for human purposes. While mentally competent humans can provide informed consent by understanding the risks and benefits, non-human animals cannot fully understand these aspects. Thus, we need other methods to determine their preferences and choices. A promising approach is to obtain informed consent by proxy from humans, alongside seeking assent from the animals where possible and paying attention to any signs of dissent. If we want to take sentient non-human animals and their interests seriously, we can try to ask for their consent before using them for human purposes. With mentally competent humans, we speak of informed consent: for them to participate in scientific studies, for example, it is required that they consent explicitly, in full understanding of the risks and benefits. This full understanding cannot be expected from non-human animals. We must therefore look for ways to know what they want and to estimate what they would do if they had a deep understanding of their options and the consequences of these options for themselves and others. This concept is explored by applying it to animal experiments. The most promising method is to gain informed consent by proxy from thoroughly informed competent humans, in combination with seeking assent where possible and being alert to dissent. [ABSTRACT FROM AUTHOR]

Abstract Behavioural nudges are often criticised because they “work best in the dark”. However, recent experimental evidence suggests that the effectiveness of nudges is not reduced when they are delivered transparently. Most people also endorse transparent nudges. Yet, transparent nudging may undermine human autonomy—a minority may oppose to being nudged and feel manipulated, even if they know what is happening. We propose an alternative way of maintaining autonomy that is not reducible to transparency: individuals can be asked if they consent in advance to being nudged. To assess whether consensual nudges are effective, we ask consent from 1518 UK citizens to be nudged. Subsequently, we default all participants into donating to a charity of their choice, irrespective of self-reported consent. We find that the default nudge is equally effective for both consenting and non-consenting individuals, with negligible difference in average donations. However, non-consenting individuals report higher levels of resentment and regret and lower levels of happiness and support compared to the consenting group. Based on these findings, we argue that ignoring consent can have serious ethical ramifications for policy-making with nudges.

How is the validity of our consent, and others' moral permission to act on our consent affected by coercion? Everyone agrees that in cases of two-party coercion—when X coerces Y to do something with or for X—the consent of the coerced is invalid, and the coercer is not permitted to act upon the consent they receive. But coercers and the recipients of consent are not always identical. Sometimes a victim, Y, agrees to do something to, with, or for Z because they are being coerced by X. Recently, several philosophers have argued that consent under third-party coercion can be fully valid. We argue that this view has troubling implications. We develop a novel view of consent in third-party coercion cases, which we call the partial validity account. The core idea is that, under severe coercion, Y's consent is at most partially valid—it reduces the strength of, but does not completely dissolve, Z's consent-sensitive duties. We argue that the partial validity account gets the right results in important cases and explains the moral factors at play better than alternative accounts. [ABSTRACT FROM AUTHOR]

Behavioural nudges are often criticised because they "work best in the dark". However, recent experimental evidence suggests that the effectiveness of nudges is not reduced when they are delivered transparently. Most people also endorse transparent nudges. Yet, transparent nudging may undermine human autonomy—a minority may oppose to being nudged and feel manipulated, even if they know what is happening. We propose an alternative way of maintaining autonomy that is not reducible to transparency: individuals can be asked if they consent in advance to being nudged. To assess whether consensual nudges are effective, we ask consent from 1518 UK citizens to be nudged. Subsequently, we default all participants into donating to a charity of their choice, irrespective of self-reported consent. We find that the default nudge is equally effective for both consenting and non-consenting individuals, with negligible difference in average donations. However, non-consenting individuals report higher levels of resentment and regret and lower levels of happiness and support compared to the consenting group. Based on these findings, we argue that ignoring consent can have serious ethical ramifications for policy-making with nudges. [ABSTRACT FROM AUTHOR]

This section explores the challenges involved in translating genomic research into genomic medicine. A number of priorities have been identified in the Australian National Health Genomics Framework for addressing these challenges. Responsible collection, storage, use and management of genomic data is one of these priorities, and is the primary theme of this section. The recent release of Genomical, an Australian data-sharing platform, is used as a case study to illustrate the type of assistance that can be provided to the health care sector in addressing this priority. The section first describes the National Framework and other drivers involved in the move towards genomic medicine. The section then examines key ethical, legal and social factors at play in genomics, with particular focus on privacy and consent. Finally, the section examines how Genomical is being used to help ensure that the move towards genomic medicine is ethically, legally and socially sound and that it optimises advances in both genomic and information technology. [ABSTRACT FROM AUTHOR]

In this article, we examine the significance of establishing participatory and consentful recordkeeping practice in the face of ubiquitous use of records beyond their original intent. Among such secondary uses is the decontextualisation of data as part of the 'industrialisation' of access and use of 'historical' records within current transactional contexts, together with a wide range of data sharing practices arising from contemporary data science paradigms. To situate the call to action for consentful recordkeeping practice, we begin the article by exploring how human ability to navigate through the perpetual twilight of records becomes increasingly murky when a wholesale approach to data collection and governance is applied by machine learning practitioners. We then re-frame some classical archival principles to align them with participatory approaches; specifically, by expanding the scope of Jenkinsonian 'moral defence' as an imperative for proactive engagement with the Archival Multiverse. We then describe a case study of consentful recordkeeping in practice, using the example of the AiLECS Lab's newly developed collection acquisition and management system. This principles-based framework informs our practices for collecting and curating datasets for machine learning research and development and aims to privilege the ongoing consent of those represented in records to their use. In the context of this work, our core premise is that technologies designed to prevent exploitation of children should aim to avoid underlying data practices that are themselves exploitative (of children or adults). [ABSTRACT FROM AUTHOR]

Human body donors play a crucial role in anatomical education, research, and clinical skills training, and those interested in anatomical donation may bequeath their bodies to body donation programs (BDPs). The purpose of this study was to evaluate the perspective of body donors on the donation process in order to make recommendations for improvement that align with donor values. A survey was administered via email to 2145 individuals that had enrolled in The Ohio State University's BDP and yielded a 40% response rate. Results showed that a majority of registered donors do not place high importance on detailed consent options during the enrollment process, but do value BDP oversight, such as through the use of an oversight committee to supervise the program. Only 9.1% of donors felt that their loved ones should be permitted to make changes to their consent forms after they have passed. Although 96.2% of participants would allow photos/videos to be taken of their donated bodies, females were significantly less likely to consent to this than males (p = 0.001), as well as less likely to allow their donations to be utilized for anatomy outreach (p = 0.023). Racial minorities were significantly less trusting of the university to treat their donation with dignity and respect compared to White registrants (p = 0.034). Suggestions for improving BDP protocols include the implementation of an annual newsletter for registrants, improving methods to spread awareness about donation, increasing transparency during the consent process, and creating resources for donors' families. [ABSTRACT FROM AUTHOR]

he United Nations Convention on the Rights of the Child (UNCRC) related to the rights of the child, on the one hand, in articles 12, 13, 14 and 15, regulates the freedoms of thought, opinion, conscience and religion, as well as association and free expression, on the other hand. Objectives: also, the holders of obligations for the child’s best interest have the duty to turn these rights into reality as a direct guarantee of respecting their interests. Therefore, the state has an obligation to create the possibility that no child is marginalized in the realization of these fundamental freedoms through all possible measures. Research methods: right compared to the position in Rep. Moldova, USA, Georgia, etc. in relation to legislative changes, jurisprudence with special regard to the cases resolved by the ECHR in the field, theoretical methods such as the comparative, historical, sociological method of course regarding the discernment of the child, because the methods used are strictly subordinate to the proposed purpose. Results and implications of the study: the Committee on the Rights of the Child (CRC), in its general comment no. 12 (2009), shows that the practices through which the contribution of children is required to rise to certain levels of honest and moral participation of children.

An emergency team was challenged with ethical issues while managing an unmarried adolescent girl who presented with an acute abdomen wherein a ruptured ectopic pregnancy was suspected. Consent remained at the center of this dilemma given the age of the patient and the nature of the issues. Herein, we deliberate upon the challenges faced by the treating team in accessing the reproductive history, obtaining consent for performing pregnancy tests and for therapeutic interventions. [ABSTRACT FROM AUTHOR]

Background: Incapacitated patients without surrogates are a highly vulnerable population that pose a unique challenge in the critical care setting. Laws regarding consent in this population vary, with many states requiring a lengthy guardian appointment process. Lack of familiarity with local laws and ambiguity with hospital policy can contribute to staff moral distress and exacerbate delays in patient care. Methods: A single-center interdisciplinary focus group was conducted to characterize staff opinions and workflow in the guardianship petition process. Subsequently, a survey was disseminated to various members of the ICU care team. The survey captured demographic information, familiarity with certain aspects of the guardianship process, opinions of appropriateness of care of these patients, and overall feelings of moral distress. Results: Focus group themes included administrative processes, desire for more education, and ethical concerns. Survey results show that clinical staff were largely unfamiliar with both hospital policies (50%) and local legislation surrounding legal guardianship (68%). There was a strong desire for an institutional procedural flowchart (85%). Perception on care varied but had no correlation to demographic factors. Every respondent reported moral distress, ranging from mild to severe (100%). Moral distress was correlated with perception of care (p=0.015), but not demographic factors. Conclusion: An institutional flowchart and other educational materials were developed with the primary intention of alleviating staff moral distress. Secondarily, these educational materials are also intended to improve delays in initiation of the guardianship process as even marginally improving the timeliness of care for vulnerable patients is worthwhile. Continued careful attention to institutional processes can be a manner of upholding the ethical pillar of justice for highly vulnerable individuals. [ABSTRACT FROM AUTHOR]

Background: Informed consent is a continuous process of communication with the patient and not merely the signing of a form. The Irish Medical Council's Guide to Good Practice and Ethics state that no part of the consent process should be delegated to an intern unless the procedure is a minor with which the intern is very familiar and all relevant information has first been explained to the intern. Aims: We aimed to evaluate whether practices regarding interns and consent had changed in the past five years. Methods: An anonymous Google Forms survey was distributed to interns from all intern networks between 24-August and 26-November 2021. Results: Of 854 interns, there were 147(17.2%) survey responses. 129(87.8%) participants had consented for a procedure. 111(86%) responded that they had consented for procedures that they had not witnessed before. 92(71.3%) reported that their medical supervisor did not explain procedures to them prior to obtaining consent. 128(99.2%) of interns were not usually observed by a more senior doctor when obtaining consent. 116(89.9%) were expected to obtain consent from patients on a regular basis, with 78(60.5%) feeling pressured into doing so on at least one occasion. Results were largely unchanged compared to when the same survey was circulated in 2016. Conclusions: Interns remain routinely involved in the consent process without adequate training or supervision. This is unfair on our most junior doctors and on patients. Steps must be taken to ensure the IMC guidance is adhered to and this deficiency must be highlighted to Senior Clinicians. [ABSTRACT FROM AUTHOR]

Arranging assent opportunities is an increasingly common strategy for involving clients in therapeutic decisions within behavior analysis. Recent behavior‐analytic articles have helped create a basic behavioral definition and conceptualization of assent, but much more guidance is needed for practitioners and researchers interested in embedding assent into their practices. The purpose of this article is to advance the conceptualization and understanding of assent and assent practices by refining previous definitions and conceptualizations of assent and providing six essential considerations for embedding assent into practice. The six considerations consist of determining the applicability and feasibility of assent, assessing assent‐related skills, arranging assent procedures and teaching assent‐related skills, arranging fair choices, selecting opportunities to assess assent, and informally assessing assent. Following the discussion of the considerations for assent practices, we issue a call for specific topics of research on assent. [ABSTRACT FROM AUTHOR]

The United Nations Convention on the Rights of the Child (UNCRC) related to the rights of the child, on the one hand, in articles 12, 13, 14 and 15, regulates the freedoms of thought, opinion, conscience and religion, as well as association and free expression, on the other hand. Objectives: also, the holders of obligations for the child's best interest have the duty to turn these rights into reality as a direct guarantee of respecting their interests. Therefore, the state has an obligation to create the possibility that no child is marginalized in the realization of these fundamental freedoms through all possible measures. Research methods: right compared to the position in Rep. Moldova, USA, Georgia, etc. in relation to legislative changes, jurisprudence with special regard to the cases resolved by the ECHR in the field, theoretical methods such as the comparative, historical, sociological method of course regarding the discernment of the child, because the methods used are strictly subordinate to the proposed purpose. Results and implications of the study: the Committee on the Rights of the Child (CRC), in its general comment no. 12 (2009), shows that the practices through which the contribution of children is required to rise to certain levels of honest and moral participation of children. [ABSTRACT FROM AUTHOR]

Summary: This editorial describes the Cass Review findings and the extraordinary challenge we all face in managing uncertainty amid a toxic and highly polarised debate. Children and young people will only get the best care if patients and professionals join forces to seek answers collaboratively and respectfully. [ABSTRACT FROM AUTHOR]

The majority of the literature focused on whether consent should be extended to the adolescent population arises from themes adapted from American tort law. In contrast to the USA, Ontario does not delineate an age of consent for medical treatment and relying on American guidelines to guide practice in Ontario is problematic. While the literature is saturated with discussions for and against seeking adolescent consent, there are currently no bioethical guidelines on adolescent consent in the province of Ontario. This paper explores adolescent refusal of care and adolescent request for care in opposition to parental wishes. The paper seeks to answer the following questions: What is the difference between an adolescent and an adult in medical decision-making? What are the barriers to seeking adolescent consent? And, can the neurobiological argument be an accurate guide for obtaining adolescent consent? [ABSTRACT FROM AUTHOR]

Abstract Context In vitro fertilisation (IVF) is now a common assisted reproductive technology (ART) procedure globally, with 8 million children alive today having been conceived utilising IVF. For many patients, IVF is a difficult experience with many discontinuing treatment because of emotional, relationship and financial stress, or intolerable physical side effects of hormone treatments. Design and Participants A qualitative study, in which 31 professionals and 25 patients from the ART sector in Australia were interviewed. The interviews were analysed using codebook thematic analysis. Results Our data indicates there are ‘silences’ within the therapeutic relationship of IVF, which may limit the capacity for patients to prepare emotionally, financially, or medically for the procedure, and may contribute to psychological distress and dissatisfaction with care. These ‘silences’ include what the patient ‘is not told’ by their clinician or ‘does not hear’ and what the patient feels they ‘cannot say’. Discussion Drawing upon the work of Jay Katz, Charis Thompson, and Miles Little on ‘silences’ and performance in clinical practice, we argue that although IVF is a complex and multifaceted procedure that is often conducted in a commercial setting, the clinical and therapeutic relationship between doctor and patient remains pivotal to the experiences of patients. The ‘silences’ within this relationship may impact negatively on decision‐making, and on the delivery and experience of care. Conclusions Careful attention to the realities of IVF treatment in the clinic room (and awareness of the performances that hide them) should allow for more present and compassionate care. Such care may leave patients more satisfied with their experience and their choices, regardless of treatment outcomes. Patient or Public Contribution This article draws on interviews with patients who had undergone or were currently undergoing IVF, as well as a range of representatives from the ART community (including reproductive medicine specialists, general practitioners, fertility nurses, counsellors, administrators in ART businesses and embryologists).

If we want to take sentient non-human animals and their interests seriously, we can try to ask for their consent before using them for human purposes. With mentally competent humans, we speak of informed consent: for them to participate in scientific studies, for example, it is required that they consent explicitly, in full understanding of the risks and benefits. This full understanding cannot be expected from non-human animals. We must therefore look for ways to know what they want and to estimate what they would do if they had a deep understanding of their options and the consequences of these options for themselves and others. This concept is explored by applying it to animal experiments. The most promising method is to gain informed consent by proxy from thoroughly informed competent humans, in combination with seeking assent where possible and being alert to dissent.

Sexting is a form of intimate communication available in today's digital society consisting of exchanging erotic-sexual content online. However, doing it without the consent of the person appearing in the content is becoming a normalized form of cyberviolence among adolescents. To advance our understanding of this phenomenon, further research is needed on its facilitating factors, which may include those related to its potential moral dimension and online disinhibition. This study aims to analyze, according to gender and age, the relationship between nonconsensual forwarding of erotic-sexual content, differentiating between the type of content and the gender of the person appearing in it, moral disengagement, and toxic online disinhibition. A total of 1,611 adolescents (47.9 percent girls) aged 12–15 years (M = 13.4; SD = 1.0) participated in the study. Moral disengagement and toxic disinhibition have been shown to facilitate nonconsensual forwarding of erotic-sexual content, but their relevance varies depending on the type of content, and whether girls or boys appear in it. Facilitating factors for nonconsensual forwarding of content featuring boys include age, the diffusion of the consequences, and toxic online disinhibition. For girls, identifying with the male gender and cognitive restructuring were the main facilitators. These findings represent an original advance in the field of study by discriminating between the type of content forwarded and the gender of the person who appears in it. The differences found contribute toward explaining the processes that lead to making immoral decisions when sexting and help lay the foundations for designing psychoeducational programs in the future. [ABSTRACT FROM AUTHOR]

The richness and complexity of consent present challenges to those aiming to make related contributions to computer information systems (CIS). This paper aims to support consent-related research in CIS by simplifying the understanding of existing literature and facilitating the framing of future consent management research. Firstly, it outlines existing consent management research and shows how it relates to the literature in law and ethics. Secondly, it presents some fundamental explanations and definitions that must be considered for further contributions to the consent management literature. Thirdly, it identifies five types of consent-related stances often taken in the consent management literature and explains each in some detail. Fourth, it explains one of the identified types of stances (i.e., the disciplinary stance) by expanding on the links between consent as a legal construct and its ethical counterpart. Fifth, considering another of the identified types of stances (i.e., the theoretical stances normally adopted in the consent management literature), the paper presents the key requirements for legally and ethically effective consent management based on three prominent theories. Sixth, it presents the identified types of stances in a conceptual model, contending that the model is novel, relevant, understandable, and useful. [ABSTRACT FROM AUTHOR]

This study aims to know the attitude and perceptions of biobanks among the general public and their willingness to donate bio specimens from a hospital in India. Biobanks collect, store bio specimens for diagnosis, treatment and research purpose. According to modern bio banking, bio specimens needs to have standard operating procedures to do so. The bio specimen should be kept confidential and anonymous. Do they have an awareness of the role of biobanks? Do they know the concept of consent and implications of retaining specimens in biobanks? This paper evaluates these areas. A cross sectional study was conducted among general public above 18 years of age using convenience sampling. The data was obtained through a questionnaire which was distributed via online using Google forms and assessed the ethical perception of the general public regarding their willingness to donate own biological samples for teaching and research purposes and their awareness and attitude on biobanks. A total of 200 participants were included in the study. 71.4% participants did not have any prior knowledge about biobanks. 59.6% of the participants were willing to donate the biospecimens for advancement in medical research, benefit the society and future generation. 43.8% of respondents emphasised the main discouraging factor in participation in biobank research is that they have fear of sample exploitation. 37.9 percent participants responded that they would like to specify the scope for use when granting permission to use their sample for research. Biobank will advance in medical research only when medical institutes and government bodies’ install privacy, consent laws and initiate lot of awareness programmes to improve public perspectives and knowledge about biobanking. [ABSTRACT FROM AUTHOR]

This paper aims to foreground the persistent ethical conundrums within the process of engaging children labeled with intellectual disabilities in the research process. I consider what happens when researchers are embedded within and committed to sustaining relationships with disabled children? I explore the possibilities of the enactment of consent as an ongoing negotiation between researcher and research participants. I contend that resisting and transforming unbalanced relations of power within research take seriously the importance of remaining mired in the ethical conundrums of the constant negotiation of research relationships that include making space for participant refusals throughout the research process. [ABSTRACT FROM AUTHOR]

Research with children is influenced by researcher's own perspectives and the diverse constructions including socio cultural perspectives of childhood. Are young children respected and cared for or overlooked by the practitioner or researcher's personal goals in research? Are issues, related to ethics in relation to children's consent and participation in research lost in translation especially in terms of expectations and interpretation in different cultural contexts. This paper explores the diverse perspectives of issues around ethics related to research with young children in early years settings. It questions the perceived tensions around adults' decisions about children's participation in research. The issues related to children's voice, gatekeepers of consent, participation, power, and children's rights will be discussed and the extent to which they influence the decisions which adults make about children's participation in any research. [ABSTRACT FROM AUTHOR]

Context: In vitro fertilisation (IVF) is now a common assisted reproductive technology (ART) procedure globally, with 8 million children alive today having been conceived utilising IVF. For many patients, IVF is a difficult experience with many discontinuing treatment because of emotional, relationship and financial stress, or intolerable physical side effects of hormone treatments. Design and Participants: A qualitative study, in which 31 professionals and 25 patients from the ART sector in Australia were interviewed. The interviews were analysed using codebook thematic analysis. Results: Our data indicates there are 'silences' within the therapeutic relationship of IVF, which may limit the capacity for patients to prepare emotionally, financially, or medically for the procedure, and may contribute to psychological distress and dissatisfaction with care. These 'silences' include what the patient 'is not told' by their clinician or 'does not hear' and what the patient feels they 'cannot say'. Discussion: Drawing upon the work of Jay Katz, Charis Thompson, and Miles Little on 'silences' and performance in clinical practice, we argue that although IVF is a complex and multifaceted procedure that is often conducted in a commercial setting, the clinical and therapeutic relationship between doctor and patient remains pivotal to the experiences of patients. The 'silences' within this relationship may impact negatively on decision‐making, and on the delivery and experience of care. Conclusions: Careful attention to the realities of IVF treatment in the clinic room (and awareness of the performances that hide them) should allow for more present and compassionate care. Such care may leave patients more satisfied with their experience and their choices, regardless of treatment outcomes. Patient or Public Contribution: This article draws on interviews with patients who had undergone or were currently undergoing IVF, as well as a range of representatives from the ART community (including reproductive medicine specialists, general practitioners, fertility nurses, counsellors, administrators in ART businesses and embryologists). [ABSTRACT FROM AUTHOR]

While there is potential for societal benefit from linkage and integration of large datasets, there are gaps in our understanding of the implications for children and young people, and limited inclusion of their views within this discourse. We aimed to understand the views and expectations of children, young people and their parents/caregivers in Aotearoa New Zealand regarding child health data storage, linkage and consent for use. This qualitative study included 24 Māori and non-Māori children, young people and their families across five focus groups, recruited from a community-based health service. A mixed Māori and non-Māori research team facilitated participant recruitment and data collection. Child, adolescent and parent/caregiver groups were held separately. Sessions were audio-recorded and the verbatim transcripts were analysed thematically. We identified three themes: (i) I am more than a number: seeing patients as people; (ii) In safe hands: data as power; and (iii) What are your intentions with my data? Consent as an active relationship. A key challenge was the reductive and stigmatizing potential of data integration for minoritised groups. Hypothetical discussions of data sharing and linkage were contingent on trust between the participant and the health professional, with negotiated data ownership. Consent was conceived as an active relationship needing renewal and renegotiation as children reached adulthood. Current consent processes for ongoing use of child data require further deliberation. Without a strong ethical and child rights-based approach to issues of child health data management, consent and linkage, we risk exacerbating health inequities and experiences of breach of trust. [ABSTRACT FROM AUTHOR]

'Uneasy comedy' can be a surprising source of moral insight. Comedies like John Marston's The Dutch Courtesan and Shakespeare's All's Well That Ends Well provoke uneasy laughter, laughter mixed with anxiety and moral concern – concern especially at how characters manipulate and deceive others to achieve certain outcomes. But the characters claim this deception is justified. They argue that their situation calls for a particular moral framework – one based on the achievement of desirable ends, rather than one based on autonomy and consent – and that their actions count as moral within that framework. The issue is that their arguments partially but don't completely succeed. A key moral piece seems to be missing – but what is it? Is the problem with the characters' actions or with the framework? To answer that question, we must determine how one would act morally within that framework and when it would be the right one to use. We must ask, essentially, how the story would have to change before we could laugh more freely. Uneasy comedies bring moral clarity through their suggestions about the different moral frameworks called for by different life contexts and what it takes to act worthily within those frameworks. [ABSTRACT FROM AUTHOR]

Precision medicine is an emergent medical paradigm that uses information technology to inform the use of targeted therapies and treatments. One of the first steps of precision medicine involves acquiring the patient’s informed consent to protect their rights to autonomous medical decision-making. In pediatrics, there exists mixed recommendations and guidelines of consent-related practices designed to safeguard pediatric patient interests while protecting their autonomy. Here, we provide a high-level, clinical primer of (1) ethical informed consent frameworks widely used in clinical practice and (2) promising modern adaptations to improve informed consent practices in pediatric precision medicine. Given the rapid scientific advances and adoption of precision medicine, we highlight the dual need to both consider the clinical implementation of consent in pediatric precision medicine workflows as well as build rapport with pediatric patients and their substitute decision-makers working alongside interdisciplinary health teams.

Abstract In a previous paper in this journal, Jennifer Frey presented three arguments against New-Kantian approaches. This paper briefly reiterates these arguments and shows why New-Kantian positions do not succumb to them. Most noteworthy, such positions are formal and not substantive. They care little about the question whether people pursue the same goods and instead stress the role of procedure in explicating rationality and consent in explicating the good. By stressing this distinction between formal and substantive approaches, this paper also provides a hint to the contentious topic of how Kantians can deal with cultural diversity, historicity, and plurality in ethics. It finishes with some questions to the author of the previous paper: do non-formal approaches imply that peace can only exist within similarity?

Keywords: Analytic identity; ethics; consent EN Analytic identity ethics consent 843 848 6 11/02/23 20231001 NES 231001 And now what will become of us without barbarians Those men were some kind of solution. I want to underline professional identity's I communicative i , external-facing function because consideration of "what is a professional identity I for i ?" In the final analysis, defining an analytic identity and being open to revisiting it is an individual ethical labour because it needs to be considered in a dialogue with "the things that matter", as Taylor puts it: I can define my identity only against the background of things that matter. Conclusion: The "work of identity" In this contribution I have suggested that defining an analytic identity at the macro level is beneficial to the development of our discipline and necessary to clearly communicate what we offer to those who seek our help. [Extracted from the article]

Organ donation and transplantation has transformed the lives of many around the world. Despite its place as a treatment option for numerous forms of end-stage organ disease, the need for careful ethical and legal consideration is paramount. In this article we discuss three rules: the Dead Donor Rule, which underpins the use of organs for donation from deceased individuals; the 'Rule of Consent' which includes consideration of both deceased and living donors and the recipients of organs; and finally the 'Fair Transplant Rule', which offers protection from the challenging issues of exploitation and organ allocation fairness. When applied in combination these rules should provide an ethically robust platform on which to deliver organ donation and transplantation. These rules can act universally and are applicable across all jurisdictions. Clinicians are encouraged to see organ donation not as a single event, but as a complex combination of individual ethical and legal activities which require independent consideration specific to the donor patient. [ABSTRACT FROM AUTHOR]

Obtaining informed consent can be challenging during peer research when the boundaries between researcher and participant are blurred. We developed a novel visual consent method with illiterate artists in Nepal who conducted peer interviews in their communities. Artists discussed and sketched images related to ethical principles to create a visual consent form. This improved comprehension about research ethics and developed the confidence of artists to conduct peer-interviews, but we found that artists memorised the form; they did not engage participants in looking at the pictures with them; and they did not use the pictures that they disagreed with. In future research, the visuals should be developed in consultation with participants and be used to explain the study to participants. The tool development process can be used to establish a joint understanding about the research, its harms, and benefits, and to develop relational and iterative consent processes in participatory action research. [ABSTRACT FROM AUTHOR]

In this article, we contribute to an emerging body of literature concerning the often-overlooked topics of access and consent in research. We posit our understanding of access and consent as continuous ethical reflection and negotiation, conceptualised here as ethical performance, which is particularly valuable in research in institutional contexts defined by numerous power asymmetries. We draw empirically from research on street-level institutional encounters between social work practitioners and migrant-background service users in the Helsinki capital region. Access in this research was a multi-stage process including various stage-related negotiations, and the previous stages always influenced the stages that followed. Nevertheless, access and consent were always erratic and subject to revision. We describe how the need for ethical reflexivity arises in various concrete, often unpredictable, situations, and argue for the importance of paying explicit analytical attention to negotiations regarding access and consent. [ABSTRACT FROM AUTHOR]

This article will focus on obtaining informed consent from the perspective of a surgical advanced clinical practitioner (SACP). There are many considerations regarding obtaining informed consent and it is recognised that the duty of this role will vary within each NHS trust. This article will reflect on whether SACPs should obtain consent for surgical procedures. [ABSTRACT FROM AUTHOR]

Within medical ethics, there is widespread agreement that morally valid consent includes an understanding condition. Disagreement centers on what is meant by that understanding condition. Tom Dougherty proposed that this understanding condition should be divided into the two mutually exclusive categories of descriptive information and contextual information. Further, Dougherty argues that each type of information is necessary to satisfy the understanding condition. In contrast, I argue that when the deontic aspect of valid consent is in view, each type of information can be sufficient to satisfy the understanding condition on its own. Moreover, by analyzing delegation, which is conceptually related to consent since both are morally transformative actions, I show that delegation often depends not on descriptive or contextual information but on trust. So, I argue that trustworthiness can also be a type of information that does the same work as descriptive and contextual information in satisfying the understanding condition for valid consent. [ABSTRACT FROM AUTHOR]

Mainstream law and ethics literature on consent to children's surgery contrasts with moral experiences of children and adults observed in two heart surgery centres. Research interviews were conducted with 45 practitioners and related experts, and with 16 families of children aged 6 to 15, admitted for non-urgent surgery, as well as an online survey. Thematic data analysis was informed by critical realism and childhood studies. Impersonal adult-centric mainstream literature assumes young children cannot consent. It is based on dichotomies: adult/child, competent/incompetent, respect or protect children, inform or distract them, use time swiftly or flexibly, verbal/non-verbal communication, respect or control children and reason/emotion. Through their moral experiences, adults and children resolve these seeming dichotomies. Through understanding young children's reasoning and emotions about complex distressing decisions related to heart surgery, adults share knowledge, control, trust and respect with them. They see children's consent or refusal before non-urgent surgery as a shared personal moral experience within the child's life course, beyond mere legal compliance. Adults help children to understand and 'want' the surgery that offers things they value: better health or to 'be more like their friends'. If children are not convinced, sometimes surgery is postponed or occasionally cancelled. [ABSTRACT FROM AUTHOR]

The bedrock of delivering cosmetic dentistry remains good communication underpinned by a clear and transparent consent process. This article looks at this while exploring the ethical and risk management issues that have started to challenge the profession. While patients' demand for cosmetic dentistry has exploded, this article explores the ethical conundrums faced by these treatments against the backdrop of whether their happiness is affected by their image. [ABSTRACT FROM AUTHOR]

Minor adolescents are often excluded from HIV prevention clinical trials due to unresolved ethical issues. Their under-representation in research leads to delayed access to new HIV prevention approaches. We examine the relationship between consent procedures, trial features, demographic and social characteristics, and minor adolescents' willingness to participate (WTP) in biomedical HIV prevention research. We recruited 14–17-year-olds at risk of HIV for this quasi-experimental study. Adolescents were randomly assigned to (1) self-consent, (2) adult permission required, or (3) parental permission required and underwent simulated consent procedures for two types of HIV prevention trials. They rated likelihood of participating in each study if offered the opportunity and completed a survey with demographic, social, and behavioral measures. One hundred and twenty nine adolescents with diverse identities and socioeconomic status enrolled. Among the 58% of participants who identified as lesbian, gay, bisexual, transgender, or queer (LGBTQ), 76% were out to at least one parent/guardian (outness). Mean WTP was 3.6 (of 5; 5 = definitely would participate) across all participants and both trial types. We found no evidence of an association between WTP and consent condition, LGBTQ identity, or outness. However, medical mistrust, communication with parents, and concern about HIV were associated with WTP. Our results suggest adolescents are willing to participate in HIV prevention trials and parental involvement in the consent process may not be the most important deciding factor. However, variation in WTP within consent groups, and variation in other significant variables, underscores the need for individualized approaches to recruitment and consent for these trials. [ABSTRACT FROM AUTHOR]

Ultra-rapid genomic sequencing (urGS) is increasingly used in neonatal and pediatric intensive care settings (NICU/PICU), demonstrating high diagnostic and clinical utility. This study aimed to explore the perspectives of healthcare professionals (HPs) and the challenges raised by urGS, particularly when making treatment decisions. Four focus groups and two interviews were conducted with HPs who had experience using urGS in NICU/PICU. Inductive content analysis was used to analyze the data. Nineteen HPs participated overall (eight clinical geneticists, nine genetic counselors, and two intensivists). One challenging area of practice identified by HPs was setting realistic expectations for outcomes of urGS among HPs and families. HPs reported modifying pre-test counseling to include life-limiting diagnoses as a possible test outcome and felt concerned about the timing of the test and its impact on parent–child bonding. UrGS results of uncertain prognostic significance posed considerable challenges. Moral distress arose when families and HPs were misaligned regarding treatment goals following the urGS diagnosis. We identified areas of practice that remain ethically challenging for HPs using urGS in the NICU/PICU. HPs experiences of using urGS in the NICU/PICU could inform specialized training in withdrawal of treatment decision making for the genomics workforce. [ABSTRACT FROM AUTHOR]