In pediatric oncology, genetic and genomic tests are proposed throughout the care pathway for many reasons (e.g., cancer characterization, identification of the most appropriate treatment, patient selection for clinical trials, identification of tissue/organ donors, or risk of relapse prediction). Despite the many different approaches (somatic or germline testing, targeted gene or genome sequencing), the implicated individuals are confronted with situations that may intersect and that are interesting to compare. No study has identified and analyzed the available works on these new practices in pediatric oncology. The aim of this narrative literature review was to describe the ethical and psychological perspectives of children with cancer, parents, and healthcare professionals when genetic or genomic testing is proposed as part of the cancer management. Eighteen articles met the inclusion criteria and were comprehensively coded using MAXQDA. Their analysis showed that concerning the subjective implications of genetic and genomic testing, the areas of ambivalence (desire of treatment, desire for knowledge, uncertainty, and guilt) reported by patients and their parents seem to mirror the healthcare professionals\' concerns. The ethical and psychological issues about predisposition testing, long discussed in the context of hereditary retinoblastoma and Li-Fraumeni syndrome, represent a useful starting point for a wider discussion of a genetic and genomic testing pathway in pediatric oncology more broadly.

The 4 basic principles of ethics (beneficence, nonmaleficence, autonomy, and justice) can guide clinical decision-making for the pregnant patient during labor and delivery, as well as when undergoing nonobstetric surgery. An evidence-based decision-making conversation with the patient facilitates obtaining informed consent. When maternal-fetal conflict arises, both during labor and delivery and nonobstetric surgery, beneficence-based obligations to both parties should be considered, with discussions and decisions well documented. Labor is not an impediment to women providing consent for care. A careful balance between evidence-based clinical judgment and patient autonomy is necessary when addressing cesarean delivery.

Background Hand surgeons have been charged with the use of diverse modalities to enhance the consenting process following the Montgomery ruling. Artificial Intelligence language models have been suggested as patient education tools that may aid consent. Methods We compared the quality and readability of the Every Informed Decision Online (EIDO) patient information leaflet for carpal tunnel release with the artificial intelligence language model Chat Generative Pretrained Transformer (GPT). Results The quality of information by ChatGPT was significantly higher using the DISCERN score, 71/80 for ChatGPT compared to 62/80 for EIDO (p=0.014). DISCERN interrater observer reliability was high (0.65) using the kappa statistic. Flesch-Kincaid readability scoring was 12.3 for ChatGPT and 7.5 for EIDO, suggesting a more complex reading age for the ChatGPT information. Conclusion The artificial intelligence language model ChatGPT produces high-quality information at the expense of readability when compared to EIDO information leaflets for carpal tunnel release consent.

Community-based palliative care (CBPC) clinicians sometimes contend with an ethically charged scenario when they encounter patients for the first time: The patient\'s spouse, or other loved one or caregiver, revokes the patient\'s valid informed consent to initiate care. While surrogates are usually motivated by protective instincts, there are other situations where surrogates act out of self-interest. This article considers whether it is ever ethically justified for an adult to revoke another adult\'s valid informed consent to initiate palliative care services. The article examines this scenario from three perspectives: the patient\'s capacity to give or relinquish informed consent, the surrogate\'s intent and use of substituted judgment or best interest, and the clinician\'s duty to provide clinical care. This ethical analysis argues that CBPC clinicians have an ethical responsibility to provide palliative care services for patients who have given valid informed consent for those services even when a surrogate acts as an interfering or oppositional force.

Substance-involved rape is increasing among college students, particularly women (Koss et al., 2022). Addressing rape requires first measuring it accurately in surveys to understand its true scope and nature. We used cognitive interviews with 40 young adults to qualitatively test the construct validity of an alcohol- and other drugs (AOD)-involved rape item in the Sexual Experiences Survey by asking participants to comment on different operationalizations of this construct. Our findings revealed that different phrasings elicited different interpretations of the items by participants. Specifically, the results indicated that (1) respondents viewed the different operationalizations as a sequence of events with varying severity; (2) some participants focused on the intentionality and responsibility of the perpetrator as opposed to opportunistic perpetration; and (3) study participants consistently chose one of the operationalizations as describing \"being roofied\" (being drugged without consent). Participants also contributed additional scenarios not described in the questionnaire and shared their interpretations of the items. The results underscore the importance of refining survey language to properly measure AOD-involved rape and allow us to understand how to tailor appropriate questions for best comprehension. The findings indicate the benefit in including several items about AOD-involved rape in questionnaires such as the Sexual Experiences Survey, with each item addressing different scenarios of victim intoxication. The results could also have important implications for sexual violence prevention programs, which should discuss consent, intentions, and responsibility specifically in the context of AOD consumption.

Nurses are regularly confronted with moral questions and ethical dilemmas in their practice, for example where a patient\'s decisions about their treatment conflict with the nurse\'s own views. While the standards contained in the Nursing and Midwifery Council The Code: Professional Standards of Practice and Behaviour for Nurses, Midwives and Nursing Associates provide nurses with an overarching framework to guide practice, it is important that nurses understand the four main principles that underpin ethical care - autonomy, beneficence, non-maleficence and justice. This article examines these four principles and how they relate to nurses\' ethical decision-making. The author also explores how nurses\' ethics were tested by the coronavirus disease 2019 (COVID-19) pandemic. Having an awareness of ethical decision-making can enhance nurses\' practice by providing them with a theoretical framework for treating patients with dignity and respect.

England switched to an opt-out system of consent in 2020 aiming to increase the number of organs available. Spain also operates an opt-out system yet has almost twice the organ donations per million population compared with England. We aimed to identify both differences and similarities in the consent policies, documents and procedures in deceased donation between the two countries using comparative qualitative content and discourse analysis. Spain had simpler, locally tailored documents, the time taken for families to review and process information may be shorter, there were more pathways leading to organ donation in Spain, and more robust legal protections for the decisions individuals made in life. The language in the Spanish documents was one of support and reassurance. Documents in England by comparison appeared confusing, since additions were designed to protect the NHS against risk and made to previous document versions to reflect the law change rather than being entirely recast. If England\'s ambition is to achieve consent rates similar to Spain this analysis has highlighted opportunities that could strengthen the English system-by giving individuals\' decisions recorded on the organ donor register legal weight, alongside unifying and simplifying consent policies and procedures to support families and healthcare professionals.

Digital phenotyping, or personal sensing, is a field of research that seeks to quantify traits and characteristics of people using digital technologies, usually for health care purposes. In this commentary, we discuss emerging ethical issues regarding the use of social media as training data for artificial intelligence (AI) models used for digital phenotyping. In particular, we describe the ethical need for explicit consent from social media users, particularly in cases where sensitive information such as labels related to neurodiversity are scraped. We also advocate for the use of community-based participatory design principles when developing health care AI models using social media data.

OBJECTIVE: Adequate preoperative information is known to improve patient outcomes. We aimed to evaluate perioperative education for paediatric patients and families undergoing intestinal stoma formation.
METHODS: UK paediatric surgery centres were invited to recruit patients aged 6-16 years with a stoma in situ or reversed within the last 2 years. Patient and parent questionnaires were posted for potential participants.
RESULTS: Eighty-three patient/parent dyads returned questionnaires. Median age was 11.5 years (range 4.1-17.8), with 48% (n = 40) formed electively. Parents rated how well-informed they felt perioperatively out of 10 (0 poorly, 10 highly informed). Parents were better informed about surgical issues and stoma care than psychological and social impacts (7.45 vs 6.11; p < 0.0001). 54% reported surgical complications but significantly fewer patients listed these amongst the worst things about having a stoma (24.4%) when compared with psychosocial issues: distress from bag leaks (90.8%; p < 0.0001), self-consciousness (54.1%; p = 0.0001), and restricted activity (40.2%; p = 0.03).
CONCLUSIONS: Parents felt well-informed for medical and practical aspects but less well-informed of psychological and lifestyle impacts of having a stoma. Surgical complications were less important to patients than the impact on daily life. Increased psychosocial information would enable families to be better prepared for life with a stoma.

UNASSIGNED: Data sharing in developmental science is increasingly encouraged, supported by funder and publisher mandates for open data access. Data sharing can accelerate discovery, link researchers with high quality analytic expertise to researchers with large datasets and democratise the research landscape to enable researchers with limited funding to access large sample sizes. However, there are also significant privacy and security concerns, in addition to conceptual and ethical considerations. These are particularly acute for developmental science, where child participants cannot consent themselves. As we move forward into a new era of data openness, it is essential that we adequately represent the views of stakeholder communities in designing data sharing efforts.
UNASSIGNED: We conducted a comprehensive survey of the opinions of 195 parents on data sharing in developmental science. Survey themes included how widely parents are willing to share their child\'s data, which type of organisations they would share the data with and the type of consent they would be comfortable providing.
UNASSIGNED: Results showed that parents were generally supportive of curated, but not open, data sharing. In addition to individual privacy and security concerns, more altruistic considerations around the purpose of research were important. Parents overwhelmingly supported nuanced consenting models in which preferences for particular types of data sharing could be changed over time. This model is different to that implemented in the vast majority of developmental science research and is contrary to many funder or publisher mandates.
UNASSIGNED: The field should look to create shared repositories that implement features such as dynamic consent and mechanisms for curated sharing that allow consideration of the scientific questions addressed. Better communication and outreach are required to build trust in data sharing, and advanced analytic methods will be required to understand the impact of selective sharing on reproducibility and representativeness of research datasets.