AJOB Empirical Bioethics最新文献

{"title":"Talking About Suffering in the Intensive Care Unit.","authors":"Brent M Kious, Judith B Vick, Peter A Ubel, Olivia Sutton, Jennifer Blumenthal-Barby, Christopher E Cox, Deepshikha Ashana","doi":"10.1080/23294515.2024.2399534","DOIUrl":"10.1080/23294515.2024.2399534","url":null,"abstract":"<p><strong>Background: </strong>Some have hypothesized that talk about suffering can be used by clinicians to motivate difficult decisions, especially to argue for reducing treatment at the end of life. We examined how talk about suffering is related to decision-making for critically ill patients, by evaluating transcripts of conversations between clinicians and patients' families.</p><p><strong>Methods: </strong>We conducted a secondary qualitative content analysis of audio-recorded family meetings from a multicenter trial conducted in the adult intensive care units of five hospitals from 2012-2017 to look at how the term \"suffering\" and its variants were used. A coding guide was developed by consensus-oriented discussion by four members of the research team. Two coders independently evaluated each transcript. We followed an inductive approach to data analysis in reviewing transcripts; findings were iteratively discussed among study authors until consensus on key themes was reached.</p><p><strong>Results: </strong>Of 146 available transcripts, 34 (23%) contained the word \"suffer\" or \"suffering\" at least once, with 58 distinct uses. Clinicians contributed 62% of first uses. Among uses describing the suffering of persons, 57% (<i>n</i> = 24) were related to a decision, but only 42% (<i>n</i> = 10) of decision-relevant uses accompanied a proposal to limit treatment, and only half of treatment-limiting uses (<i>n</i> = 5) were initiated by clinicians. The target terms had a variety of implicit meanings, including poor prognosis, reduced functioning, pain, discomfort, low quality of life, and emotional distress. Suffering was frequently attributed to persons who were unconscious.</p><p><strong>Conclusions: </strong>Our results did not support the claim that the term \"suffering\" and its variants are used primarily by clinicians to justify limiting treatment, and the terms were not commonly used in our sample when decisions were requested. Still, when these terms were used, they were often used in a decision-relevant fashion.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"52-59"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11785475/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142297529","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"Down Syndrome is Not a Curse\": parent Perspectives on the Medicalization of Down Syndrome.","authors":"Kirsten A Riggan, Marsha Michie, Megan Allyse","doi":"10.1080/23294515.2024.2388533","DOIUrl":"10.1080/23294515.2024.2388533","url":null,"abstract":"<p><strong>Background: </strong>Potential clinical interventions to mitigate or eliminate symptoms of Down syndrome (DS) continue to be an active area of pre-clinical and clinical research. However, views of members of the DS community have yet to be fully explored.</p><p><strong>Methods: </strong>We conducted a survey with parents/caregivers of people with DS (<i>n</i> = 532) to explore interest in potential therapeutic approaches during fetal development or childhood that may improve neurocognition and modulate the DS phenotype. We qualitatively analyzed open-ended responses.</p><p><strong>Results: </strong>Some respondents rejected the development of therapies for DS categorically as being fundamentally ableist and promoting the erasure of diverse individuals. Many reflected tensions between the desire to improve quality of life and an aversion to erasure of a child's personality.</p><p><strong>Conclusion: </strong>Findings suggest that views on identity, personality, and disability may influence the acceptance of new interventions, especially if they are thought to mitigate positive attributes of the phenotype or negatively influence social acceptance of people with DS.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"10-21"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11785502/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141903169","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Enhancing Animals is \"Still Genetics\": Perspectives of Genome Scientists and Policymakers on Animal and Human Enhancement.","authors":"Rebecca L Walker, Zachary Ferguson, Logan Mitchell, Margaret Waltz","doi":"10.1080/23294515.2024.2441688","DOIUrl":"https://doi.org/10.1080/23294515.2024.2441688","url":null,"abstract":"<p><strong>Background: </strong>Nonhuman animals are regularly enhanced genomically with CRISPR and other gene editing tools as scientists aim at better models for biomedical research, more tractable agricultural animals, or animals that are otherwise well suited to a defined purpose. This study investigated how genome editors and policymakers perceived ethical or policy benefits and drawbacks for animal enhancement and how perceived benefits and drawbacks are alike, or differ from, those for human genome editing.</p><p><strong>Methods: </strong>We identified scientists through relevant literature searches as well as conference presentations. Policymakers were identified through rosters of genome editing oversight groups (e.g., International Commission on the Clinical Use of Human Germline Genome Editing, World Health Organization) or efforts aimed at influencing policy (e.g., deliberative democracy groups). Interviews covered participants' views on ethical differences between interventions affecting somatic or germline cells and distinctions between using gene editing for disease treatment, prevention, and enhancement purposes.</p><p><strong>Results: </strong>Of the 92 participants interviewed, 81 were genome editing scientists, and 33 were policymakers, with 22 interviewees being both scientists and policymakers. Multiple areas were identified in which the ethical implications of genomic enhancements for nonhuman animals differ from those for human animals including with respect to experiential welfare; germline edits; environmental sustainability; and justice.</p><p><strong>Conclusions: </strong>Overall, respondents viewed that animal enhancement is unburdened by the ethical complexities of human enhancement. These views may be related to participant perceptions of animals' lesser moral status and because germline editing in animals is common practice.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"1-9"},"PeriodicalIF":0.0,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142847861","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Associations Between the Legalization and Implementation of Medical Aid in Dying and Suicide Rates in the United States.","authors":"Olivia P Sutton, Brent M Kious","doi":"10.1080/23294515.2024.2433474","DOIUrl":"https://doi.org/10.1080/23294515.2024.2433474","url":null,"abstract":"<p><strong>Background: </strong>Some have hypothesized that changing attitudes toward medical aid in dying (MAID) contribute to increased suicide rates, perhaps by increasing interest in dying or the perceived acceptability of suicide. This would represent a strong criticism of MAID policies. We sought to evaluate the association between the legalization and implementation of MAID across the U.S. and changing suicide rates.</p><p><strong>Methods: </strong>We evaluated state-level monthly suicide death rates from 1995 to 2021. Because suicide rates vary by state, we constructed geographically-weighted regression models controlling for annualized state-level sociodemographic factors, such as racial distribution (percent Caucasian), average age, income levels, unemployment rates, rates of spiritual engagement, firearm ownership rates, gender ratios, and education levels. We applied a difference-in-difference analysis within our geographically-weighted models.</p><p><strong>Results: </strong>927,929 Suicide deaths were represented in the study. Ten states and the District of Columbia had legalized MAID within the study period. In an univariable analysis, states that legalized MAID differed significantly from non-MAID states with respect to mean monthly suicide rate (non-MAID States: 1.46; MAID states: 1.78; <i>p</i> < 0.0001), as well as several covariates. Monthly suicide death rates were spatially autocorrelated (Moran's <i>I</i> = 0.607, <i>p</i> < 0.0001). In separate geographically-weighted difference-in-difference analyses, changes in suicide rates were not significantly associated with MAID legalization (<i>β</i> = 0.042, <i>p</i> = 0.33) or with later MAID implementation (<i>β</i> = 0.030, <i>p</i> = 0.63), with differences in suicide rates in MAID and non-MAID states being attributable to baseline between-state differences.</p><p><strong>Conclusions: </strong>Our study failed to find evidence that suicide rates were positively associated with MAID legalization or MAID implementation, when controlling for geographic variation and multiple sociodemographic factors associated with suicide risk. This finding contrasts with other studies that have reported a positive association between suicide rates and MAID, and so calls into question one argument against MAID legalization.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"1-9"},"PeriodicalIF":0.0,"publicationDate":"2024-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142802599","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethics Consultation in U.S. Pediatric Hospitals: Adherence to National Practice Standards.","authors":"Helena Arango, Colette Gramszlo, Jaideep Grewal, Arzu Cetin, Meaghann Weaver, Jennifer K Walter","doi":"10.1080/23294515.2024.2433473","DOIUrl":"https://doi.org/10.1080/23294515.2024.2433473","url":null,"abstract":"<p><strong>Background: </strong>The American Society for Bioethics and Humanities (ASBH), a professional organization that certifies ethics consultants who pass the qualifying examination, published standards for the conduct of ethics consultations (EC). A national survey of adult hospital ethics consultants identified adherence to these standards, but no assessment of pediatric hospitals' adherence has been done.</p><p><strong>Methods: </strong>In this cross-sectional study, a national questionnaire was distributed electronically in 2022 to pediatric ethics consultants at children's hospitals, collecting information about adherence to the ASBH standards. Hospital characteristics were extracted from the Children's Hospital Association Annual Benchmark Report. Quantitative analysis included descriptive statistics to assess adherence and analyses of variance to investigate associations between hospital characteristics and the time taken to respond to consultations.</p><p><strong>Results: </strong>Of the 181 eligible pediatric hospitals, we received 104 completed surveys (57%) from 45 states. Pediatric EC have similar adherence rates to ASBH standards as adult hospitals. High-adherence (>75%) areas included having an expert available for EC and permitting any staff member to request EC. Low-adherence areas included having comprehensive policies covering all aspects of EC activities, having a response plan for egregious violations, and the elicitation of formal feedback after EC. There is an increased average response time for ethics consultation services in smaller pediatric hospitals and church-operated hospitals.</p><p><strong>Conclusions: </strong>Pediatric hospitals overall have moderate adherence to the ASBH EC standards, with the highest rates occurring for standards that are shared by the American Academy of Pediatrics. Additional research into the barriers to standard adherence and the effectiveness of standards is warranted with emphasis on the impact of adherence on consultation quality.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"1-8"},"PeriodicalIF":0.0,"publicationDate":"2024-12-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142787217","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Monitored and Cared for at Home? Privacy Concerns When Using Smart Home Health Technologies to Care for Older Persons.","authors":"Yi Jiao Angelina Tian, Vanessa Duong, Eike Buhr, Nadine Andrea Felber, Delphine Roulet Schwab, Tenzin Wangmo","doi":"10.1080/23294515.2024.2416121","DOIUrl":"https://doi.org/10.1080/23294515.2024.2416121","url":null,"abstract":"<p><strong>Background: </strong>States and families are facing growing challenges provide adequate care for older persons. Smart home health technologies (SHHTs) in the forms of sensor or robotic devices have been discussed as technical solutions for caregiving. Ethical and social concerns are raised with the use of such technologies for caregiving purposes, a particularly prominent one being privacy. This paper contributes to the literature by distinguishing privacy concerns into both the type of technologies and conceptual dimensions.</p><p><strong>Methods: </strong>Data for this paper stem from sixty semi-structured interviews with older persons, informal, and formal caregivers living in the German-speaking regions of Switzerland. All information related to privacy, that were initially inductively coded, were thematically sorted into four dimensions of privacy (physical, psychological, social, and informational) and by the type of technologies studied.</p><p><strong>Results: </strong>Participants were especially concerned about privacy intrusions from smart wearables and ambient sensors than robotic technologies, which may be due to the relative lack of familiarity with the latter. Informational privacy was evident in the context of data collection capacities and potential for misuses of data. The installation and implementation of both visual and ambient sensors induced discomfort to their senses of physical space. Alerts of smart wearables and obtrusive sightings of SHHTs garnered worries related to stigmatization and manipulation, indicating intrusions into end-users' psychological privacy. Little discussions of social dimensions of privacy were evident in the data, even toward robotic technologies for their functions to promote social interactions for older persons.</p><p><strong>Conclusions: </strong>This paper is one of the first that use the stratification approach on empirical data to highlight the multi-faceted privacy concerns when technologies may be implemented in elder care. Our paper could thus supports potential end-users in deciding which technologies to use and how to balance different privacy concerns against other values that they may hold important.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"1-16"},"PeriodicalIF":0.0,"publicationDate":"2024-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476863","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"Ethical Responsibility Very Often Gets Drowned Out\": A Qualitative Interview Study of Genome Scientists' and ELSI Scholars' Perspectives on the Role and Relevance of ELSI Expertise.","authors":"Daphne O Martschenko, Anna Granucci, Mildred K Cho","doi":"10.1080/23294515.2024.2370769","DOIUrl":"10.1080/23294515.2024.2370769","url":null,"abstract":"<p><strong>Background: </strong>Genome scientists and Ethical, Legal, and Social Implications of genetics (ELSI) scholars commonly inhabit distinct research cultures - utilizing different research methods, asking different research questions, and valuing different types of knowledge. Collaborations between these two communities are frequently called for to enhance the ethical conduct of genomics research. Yet, little has been done to qualitatively compare genome scientists' and ELSI scholars' perspectives on collaborations with each other and the factors that may affect these collaborations.</p><p><strong>Methods: </strong>20 semi-structured interviews with US-based genome scientists and ELSI scholars were conducted between June-September 2021. Interviews were analyzed using inductive thematic analysis.</p><p><strong>Results: </strong>Genome scientists and ELSI scholars provided different understandings of the value and goals of their collaborations with each other. Genome scientists largely perceived ELSI expertise to be relevant for human subjects research; they described ELSI scholars as communicators who help the public and/or study participants better understand genomics research. In comparison, ELSI scholars viewed themselves as developing and implementing policies; they expressed frustration at how scientists can misunderstand their research methods or negatively perceive them. A combination of factors - both structural (e.g., criteria for promotion) and cultural (e.g., perceptions of what colleagues value and respect) - seemed to shape these diverging perspectives.</p><p><strong>Conclusion: </strong>Academic institutions, funders, and researchers commonly call for collaborations between genome scientists and ELSI scholars, but under-consider how their different conceptual frameworks, research methods, goals, norms, and values, conjoin to affect such partnerships. Acknowledging, exploring, and addressing the complex interplay between these factors could help to more effectively facilitate collaborations between genome scientists and ELSI scholars.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"312-323"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11502269/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141447263","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Advance Medical Decision-Making Differs Across First- and Third-Person Perspectives.","authors":"James Toomey, Jonathan Lewis, Ivar R Hannikainen, Brian D Earp","doi":"10.1080/23294515.2024.2336900","DOIUrl":"10.1080/23294515.2024.2336900","url":null,"abstract":"<p><strong>Background: </strong>Advance healthcare decision-making presumes that a prior treatment preference expressed with sufficient mental capacity (\"T1 preference\") should trump a contrary preference expressed after significant cognitive decline (\"T2 preference\"). This assumption is much debated in normative bioethics, but little is known about lay judgments in this domain. This study investigated participants' judgments about which preference should be followed, and whether these judgments differed depending on a first-person (deciding for one's future self) versus third-person (deciding for a friend or stranger) perspective.</p><p><strong>Methods: </strong>A vignette-based survey was conducted (<i>N</i> = 1445 US Americans; gender-balanced sample), in a 3 (relationship: self, best friend, stranger) × 2 (T1 preference: treat, do not treat) × 2 (T2 contrary preference: ambiguous, unambiguous) design.</p><p><strong>Results: </strong>Participants were more likely to defer to the incapacitated T2 preference of a third-party, while being more likely to insist on following their own T1 capacitated preference. Further, participants were more likely to conclude that others with substantial cognitive decline were still their \"true selves,\" which correlated with increased deference to their T2 preferences.</p><p><strong>Conclusions: </strong>These findings add to the growing evidence that lay intuitions concerning the ethical entitlement to have decisions respected are not only a function of cognition, as would be expected under many traditional bioethical accounts, but also depend on the relationship of the decision to the decision-maker's true self.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"237-245"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140872657","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"To Counsel or Not to Counsel: Physician Attitudes and Experiences with Do-It-Yourself (DIY) Fecal Microbiota Transplant (FMT).","authors":"Susannah F Colt, Rebekah J Choi, Anna Wexler","doi":"10.1080/23294515.2024.2370776","DOIUrl":"10.1080/23294515.2024.2370776","url":null,"abstract":"<p><strong>Background: </strong>In the early 2010s, a phenomenon known as do-it-yourself (DIY) fecal microbiota transplant (FMT) emerged as lay individuals began self-administering FMTs at home. Although prior research indicates that many individuals who perform DIY FMT have sought advice from healthcare providers, to date there has been no investigation of physicians' experiences with DIY FMT. The objective of this qualitative study was to examine the attitudes of physicians who offer FMT regarding the practice of DIY FMT and to assess how they navigated the ethical challenges of patient requests for DIY FMT.</p><p><strong>Methods: </strong>We recruited physicians listed on two patient-created online databases of FMT providers. All physicians who indicated having been approached for advice about DIY FMT were included in the study. Semi-structured interviews with physicians explored their attitudes toward and experiences with DIY FMT.</p><p><strong>Results: </strong>Of 18 physicians interviewed, one reported having provided counsel in response to an initial patient inquiry about DIY FMT, 2 indicated they explicitly advised against DIY FMT and refused to provide advice, and 15 fell in a middle category of discouraging DIY FMT and discussing reasons why. Among the physicians in this third category, four reported that they had changed their approach to providing counsel in response to a patient telling them they were going to perform DIY FMT anyway.</p><p><strong>Conclusions: </strong>Physicians in our study employed a wide range of strategies for promoting safety in the DIY FMT context, from explicitly advising against the procedure to the provision of guidance aimed at mitigating potential harms. While there has been increasing attention to the practices of DIY medicine, this study underscores the need for greater attention to the ethically complex situations that physicians face when patients request guidance for unapproved at-home treatments.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"324-335"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11502274/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141471314","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pediatric Assent in Clinical Practice: A Critical Scoping Review.","authors":"Jason Adam Wasserman, Amelia N Najor, Natalie Liogas, Stephanie M Swanberg, Abram Brummett, Naomi T Laventhal, Mark Christopher Navin","doi":"10.1080/23294515.2024.2388517","DOIUrl":"10.1080/23294515.2024.2388517","url":null,"abstract":"<p><strong>Background: </strong>This study assesses how pediatric assent is conceptualized and justified within the therapeutic context. Pediatric ethicists generally agree that children should participate in medical care decisions in developmentally appropriate ways. Much attention has been paid to pediatric assent for research participation, but ambiguities persist in how assent is conceptualized and operationalized in the therapeutic context where countervailing considerations such as the child's best interest and parental permission must also be weighed.</p><p><strong>Methods: </strong>Searches were conducted in 11 databases including PubMed, Embase, Cochrane Library, and Web of Science. Articles published between 2010 and 2020 were screened in COVIDENCE for meeting each of four criteria: (1) focusing on pediatric assent, (2) focusing on clinical care, (3) including normative claims, and (4) containing substantive statements about the meaning of pediatric assent. Full texts were abstracted for (1) operational definitions of assent, (2) discussion of the temporal nature of assent, (3) description of the concept of \"understanding,\" and (4) ethical justifications for soliciting assent. These excerpts were coded and code patterns formed themes presented in the results.</p><p><strong>Results: </strong>The final analytic data set contained 29 articles. Analysis yielded three key themes. First, valid assent varies by treatment, population (e.g., younger versus older), and geographic/cultural context. Second, assent represents two distinct longitudinal processes: One involves eliciting preferences over a disease course or care episode; the other focuses on children's developmental maturation. Third, ethical justifications for assent draw variously on instrumental and intrinsic reasons, but often remain ambiguous.</p><p><strong>Conclusions: </strong>There is widespread agreement that assent is morally valuable, but there remain substantial ambiguities or disagreements about its meaning, process, and ethical justification.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"336-346"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142019052","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}