AJOB Empirical Bioethics最新文献

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Expert Views on Medical Involvement in the Swiss Assisted Dying Practice: "We Want to Have Our Cake and Eat It Too"? 专家对瑞士辅助死亡实践中医疗参与的看法:我们想 "既吃蛋糕又吃蛋糕"?
AJOB Empirical Bioethics Pub Date : 2024-01-01 Epub Date: 2023-07-24 DOI: 10.1080/23294515.2023.2232796
Christina Nyquist, Raphael Cohen-Almagor, Scott Y H Kim
{"title":"Expert Views on Medical Involvement in the Swiss Assisted Dying Practice: \"We Want to Have Our Cake and Eat It Too\"?","authors":"Christina Nyquist, Raphael Cohen-Almagor, Scott Y H Kim","doi":"10.1080/23294515.2023.2232796","DOIUrl":"10.1080/23294515.2023.2232796","url":null,"abstract":"<p><strong>Background: </strong>Most jurisdictions that allow euthanasia and assisted suicide (AS) regulate it through the medical profession. However, the extent and nature of how medicine should be involved are debated. Swiss AS practice is unusual in that it is managed by lay AS organizations that rely on a law that permits AS when done for nonselfish reasons. Physicians are not mentioned in the law but are usually called upon to prescribe the lethal medications and perform capacity evaluations.</p><p><strong>Methods: </strong>We analyzed in-depth interviews of 23 Swiss AS experts including ethicists, lawyers, medical practitioners, and senior officials of AS organizations for their views on AS.</p><p><strong>Results: </strong>Although there was agreement on some issues (e.g., need for better end-of-life care), the interviewees' preferred model for AS, and the nature of preferred medical involvement, varied, which we categorized into five types: preference for AS practice as it occurred prior to lay AS organizations; preference for the current lay model; preference for a modified lay model to increase autonomy protections while limiting medical AS normalization; preference for various types of more medicalized models of AS; and, ambivalence about any specific model of medical involvement. The rationales given for each type of model reflected varying opinions on how medicine's role would likely impact AS practice and demonstrated the experts' attitudes toward those impacts.</p><p><strong>Conclusion: </strong>The dynamics within the Swiss AS regime, as reflected in the varying views of Swiss AS experts, shed light on the dilemmas inherent to medical scope and involvement in AS, which may have implications for debates in other jurisdictions.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"41-59"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10805980/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9919514","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}
引用次数: 0
Stakeholders' Ethical Concerns Regarding Psychiatric Electroceutical Interventions: Results from a US Nationwide Survey. 利益相关者对精神科电疗干预的伦理关注:美国全国性调查的结果。
AJOB Empirical Bioethics Pub Date : 2024-01-01 Epub Date: 2023-06-21 DOI: 10.1080/23294515.2023.2224592
R Bluhm, E D Sipahi, E D Achtyes, A M McCright, L Y Cabrera
{"title":"Stakeholders' Ethical Concerns Regarding Psychiatric Electroceutical Interventions: Results from a US Nationwide Survey.","authors":"R Bluhm, E D Sipahi, E D Achtyes, A M McCright, L Y Cabrera","doi":"10.1080/23294515.2023.2224592","DOIUrl":"10.1080/23294515.2023.2224592","url":null,"abstract":"<p><strong>Background: </strong>Psychiatric electroceutical interventions (PEIs) use electrical or magnetic stimulation to treat mental disorders and may raise different ethical concerns than other therapies such as medications or talk therapy. Yet little is known about stakeholders' perceptions of, and ethical concerns related to, these interventions. We aimed to better understand the ethical concerns of a variety of stakeholder groups (patients with depression, caregivers of patients, members of the public, and psychiatrists) regarding four PEIs: electroconvulsive therapy (ECT), repetitive transcranial magnetic stimulation (rTMS), deep brain stimulation (DBS), and adaptive brain implants (ABI).</p><p><strong>Methods: </strong>We conducted a national survey of these four stakeholder groups, using an embedded video vignette experiment depicting a patient with treatment-resistant depression and her psychiatrist discussing the possibility of treatment with one of the four PEIs.</p><p><strong>Results: </strong>Participants' ethical concerns varied by stakeholder group, by PEI, and by the interaction of the two. The three non-clinician groups tended to have similar ethical concerns, but to differ from psychiatrists. Similar concerns were raised with regard to the two implantable technologies, DBS and ABI. Overall, there was relatively little concern about the involuntary use of PEIs, though some expressed concern about the adequacy of information provided during the consent process. There was also significant concern that patients may not receive helpful therapies.</p><p><strong>Conclusions: </strong>To our knowledge, this is the first national survey that includes multiple stakeholder groups and multiple PEI modalities. A better understanding of the ethical concerns of stakeholders can help to shape clinical practice and health care policy regarding PEIs.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"11-21"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10733552/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9672759","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}
引用次数: 0
Frequency of Perceived Conflict between Families and Clinicians at Time of Clinical Ethics Consultation in Hospitalized Children. 住院儿童临床伦理咨询时家庭和临床医生之间感知冲突的频率。
AJOB Empirical Bioethics Pub Date : 2024-01-01 Epub Date: 2024-01-24 DOI: 10.1080/23294515.2023.2262958
Aleksandra E Olszewski, Chuan Zhou, Jiana Ugale, Jessica Ramos, Arika Patneaude, Douglas J Opel
{"title":"Frequency of Perceived Conflict between Families and Clinicians at Time of Clinical Ethics Consultation in Hospitalized Children.","authors":"Aleksandra E Olszewski, Chuan Zhou, Jiana Ugale, Jessica Ramos, Arika Patneaude, Douglas J Opel","doi":"10.1080/23294515.2023.2262958","DOIUrl":"10.1080/23294515.2023.2262958","url":null,"abstract":"<p><strong>Background: </strong>Little is known about the frequency of conflict between clinicians and families at the time of pediatric clinical ethics consultation (CEC) and what factors are associated with the presence of conflict.</p><p><strong>Methods: </strong>We conducted a retrospective cohort study at a single, tertiary urban US pediatric hospital that included all hospitalized patients between January 2008 and December 2019 who received CEC. Utilizing the hospital's CEC database that requires documentation of the presence of conflict by the consultant at the time of CEC, we determined the frequency and types of perceived conflict between families and clinicians. We also assessed the bivariable association between conflict and patient age, patient- or family-reported race/ethnicity, language for care, insurance status, clinical setting, and consultant involvement.</p><p><strong>Results: </strong>Perceived conflict between clinicians and families was present in 44% (91/209) of CEC. We observed a higher occurrence of clinician-family conflict within certain consult topics than others, in particular, informed consent/parental permission (69%), cultural considerations (67%), benefit/harm assessment (58%), and limitation of life-sustaining treatment (58%). We found no other significant associations between the presence of perceived conflict and patient sociodemographic factors or CEC factors.</p><p><strong>Conclusions: </strong>Conflict between healthcare teams and families appears common in CEC, particularly with certain consult topics. Further study is needed to better understand conflict types, causes of conflicts, management and mediation strategies, and outcomes.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"60-65"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41158468","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}
引用次数: 0
Perceptions of Psychosocial and Ethical Issues and the Psychological Characteristics of Donors in the Clinical Setting of Living Kidney Donors: A Qualitative Study. 活体肾脏捐献者临床环境中对社会心理和伦理问题的看法以及捐献者的心理特征:定性研究。
AJOB Empirical Bioethics Pub Date : 2024-01-01 Epub Date: 2023-07-07 DOI: 10.1080/23294515.2023.2232776
Nana Arai, Naoki Yokoyama, Mayumi Hara, Yoshiyuki Takimoto
{"title":"Perceptions of Psychosocial and Ethical Issues and the Psychological Characteristics of Donors in the Clinical Setting of Living Kidney Donors: A Qualitative Study.","authors":"Nana Arai, Naoki Yokoyama, Mayumi Hara, Yoshiyuki Takimoto","doi":"10.1080/23294515.2023.2232776","DOIUrl":"10.1080/23294515.2023.2232776","url":null,"abstract":"<p><strong>Background: </strong>There are several psychosocial and ethical issues surrounding the decision to be a living kidney donor. The present study aimed to determine the perceptions of psychosocial and ethical issues that living kidney donors may have, and analyze their psychological characteristics.</p><p><strong>Methods: </strong>Face-to-face semi-structured interviews were conducted with 15 donors. Thematic analysis was then performed to categorize the thematic elements of the transcripts. All procedures were approved by the relevant review board.</p><p><strong>Results: </strong>Four main categories were identified: Awareness of family dynamics, barriers to a proper understanding, contrasting psychological effects of recipient presence in clinical practice, insufficient information explained in informed consent.</p><p><strong>Conclusion: </strong>Donors felt that they took on the \"role as a care giver\" for the recipient and were less aware of themselves as patients. This is a new concept that has not been shown in previous studies. Donors exist within the recipient and family, and the range of their autonomy may go beyond the traditional concept of autonomy and be rooted in relational autonomy. This study suggested that medical treatment in the presence of the recipient promotes the relational autonomy of the donor.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"22-32"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9749942","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}
引用次数: 0
Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository. 比较加入基因组研究库的青少年和儿童家长对基因组隐私和数据共享的态度。
AJOB Empirical Bioethics Pub Date : 2024-01-01 Epub Date: 2023-07-24 DOI: 10.1080/23294515.2023.2232780
Courtney Berrios, Shelby Neal, Tricia Zion, Tomi Pastinen
{"title":"Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository.","authors":"Courtney Berrios, Shelby Neal, Tricia Zion, Tomi Pastinen","doi":"10.1080/23294515.2023.2232780","DOIUrl":"10.1080/23294515.2023.2232780","url":null,"abstract":"<p><strong>Background: </strong>Sharing of genomic data aims to make efficient use of limited resources, which may be particularly valuable in rare disease research. Adult research participants and parents of pediatric research participants have shown support for data sharing with protections, but little is known about adolescent attitudes on genomic privacy and data sharing.</p><p><strong>Methods: </strong>In-depth interviews were conducted with 10 adolescents and 18 parents of children enrolled in a pediatric genomic research repository. Interview transcripts were analyzed for themes on attitudes toward genomic privacy, restricted-access data sharing, and open-access data sharing. Findings in adolescent and parent participants were compared and contrasted.</p><p><strong>Results: </strong>No adolescents endorsed privacy concerns for restricted-access data sharing. Both adolescents and parents saw value in data sharing for reaching the goals of research and discussed trust in institutions and researchers to protect their data and use it as intended. Adolescents were more likely than parents to accept open-access data sharing, including after risks were discussed.</p><p><strong>Conclusions: </strong>In this exploratory study, adolescents and parents enrolled in a genomic research repository shared many attitudes about genomic data sharing, but adolescents were less concerned about privacy and more agreeable toward open-access data sharing. Future research is needed to investigate this hypothesis in expanded populations and settings, and to clarify whether adolescent attitudes change with age and experiences.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"33-40"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10805964/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10223177","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}
引用次数: 0
A Focus Group Study of the Views of Persons with a History of Psychiatric Illness about Psychiatric Medical Aid in Dying. 关于有精神病史者对精神科临终医疗协助的看法的焦点小组研究。
AJOB Empirical Bioethics Pub Date : 2024-01-01 Epub Date: 2023-06-20 DOI: 10.1080/23294515.2023.2224591
Brent M Kious, Margaret Pabst Peggy Battin
{"title":"A Focus Group Study of the Views of Persons with a History of Psychiatric Illness about Psychiatric Medical Aid in Dying.","authors":"Brent M Kious, Margaret Pabst Peggy Battin","doi":"10.1080/23294515.2023.2224591","DOIUrl":"10.1080/23294515.2023.2224591","url":null,"abstract":"<p><strong>Background: </strong>Medical aid in dying (MAID) is legal in a number of countries, including some states in the U.S. While MAID is only permitted for terminal illnesses in the U.S., some other countries allow it for persons with psychiatric illness. Psychiatric MAID, however, raises unique ethical concerns, especially related to its effects on mental illness stigma and on how persons with psychiatric illnesses would come to feel about treatment and suicide. To explore those concerns, we conducted several focus groups with persons with lived experience of mental illness.</p><p><strong>Methods: </strong>We conducted three video-conference-based focus groups involving adults residing in the U.S. who reported a prior diagnosis of any psychiatric illness. Only participants who reported thinking that MAID for terminal illness was morally acceptable were included. Focus group participants were asked to respond to a series of four questions. Groups were facilitated by a coordinator who was independent of the research team.</p><p><strong>Results: </strong>A total of 22 persons participated in the focus groups. The majority of participants had depression and anxiety disorders; no participants had psychotic disorders such as schizophrenia. Many participants strongly favored permitting psychiatric MAID, generally on the basis of respect for autonomy, its effects on stigma, and the severe suffering caused by mental illness. Others expressed concerns, typically related to difficulties in ensuring decision-making capacity and to the risk that MAID would be used in lieu of suicide.</p><p><strong>Conclusions: </strong>Persons with a history of psychiatric illness, as a group, have a diverse array of views about the permissibility of psychiatric MAID, reflecting nuanced consideration of how it relates to the public perception of mental illness, stigma, autonomy, and suicide risk.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"1-10"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10042887","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}
引用次数: 0
Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders. HIV分子监测中的同意?:关键利益相关者的观点。
AJOB Empirical Bioethics Pub Date : 2024-01-01 Epub Date: 2024-01-24 DOI: 10.1080/23294515.2023.2262967
Stephen Molldrem, Anthony K J Smith, Vishnu Subrahmanyam
{"title":"Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders.","authors":"Stephen Molldrem, Anthony K J Smith, Vishnu Subrahmanyam","doi":"10.1080/23294515.2023.2262967","DOIUrl":"10.1080/23294515.2023.2262967","url":null,"abstract":"<p><strong>Background: </strong>The emergence of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs as key features of the United States (US) HIV strategy since 2018 has caused major controversies. HIV surveillance programs that re-use individuals' routinely collected clinical HIV data do not require consent on the basis that the public benefit of these programs outweighs individuals' rights to opt out. However, criticisms of MHS/CDR have questioned whether expanded uses of HIV genetic sequence data for prevention reach beyond traditional public health ethics frameworks. This study aimed to explore views on consent within MHS/CDR among critical stakeholders.</p><p><strong>Methods: </strong>In 2021 we interviewed 26 US HIV stakeholders who identified as being critical or concerned about the rollout of MHS/CDR. Stakeholders included participants belonging to networks of people living with HIV, other advocates, academics, and public health professionals. This analysis focused on identifying the range of positions among critical and concerned stakeholders on consent affordances, opt-outs, how to best inform people living with HIV about how data about them are used in public health programs, and related ethical issues.</p><p><strong>Results: </strong>Participants were broadly supportive of introducing some forms of consent into MHS/CDR. However, they differed on the specifics of implementing consent. While some participants did not support introducing consent affordances, all supported the idea that people living with HIV should be informed about how HIV surveillance and prevention is conducted and how individuals' data are used.</p><p><strong>Conclusions: </strong>MHS/CDR has caused sustained controversy. Among critical stakeholders, consent is generally desirable but contested, although the right for people living with HIV to be informed was centrally supported. In an era of big data-driven public health interventions and routine uses of HIV genetic sequence data in surveillance and prevention, CDC and other agencies should revisit public health ethics frameworks and consider the possibility of consent processes.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"66-79"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41145506","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}
引用次数: 0
A Content Analysis of Self-Reported Financial Relationships in Biomedical Research. 对生物医学研究中自我陈述的财务关系的内容分析。
AJOB Empirical Bioethics Pub Date : 2023-04-01 Epub Date: 2022-12-28 DOI: 10.1080/23294515.2022.2160509
S Scott Graham, Nandini Sharma, Martha S Karnes, Zoltan P Majdik, Joshua B Barbour, Justin F Rousseau
{"title":"A Content Analysis of Self-Reported Financial Relationships in Biomedical Research.","authors":"S Scott Graham, Nandini Sharma, Martha S Karnes, Zoltan P Majdik, Joshua B Barbour, Justin F Rousseau","doi":"10.1080/23294515.2022.2160509","DOIUrl":"10.1080/23294515.2022.2160509","url":null,"abstract":"<p><strong>Introduction: </strong>Financial conflicts of interest (fCOI) present well documented risks to the integrity of biomedical research. However, few studies differentiate among fCOI types in their analyses, and those that do tend to use preexisting taxonomies for fCOI identification. Research on fCOI would benefit from an empirically-derived taxonomy of self-reported fCOI and data on fCOI type and payor prevalence.</p><p><strong>Methods: </strong>We conducted a content analysis of 6,165 individual self-reported relationships from COI statements distributed across 378 articles indexed with PubMed. Two coders used an iterative coding process to identify and classify individual fCOI types and payors. Inter-rater reliability was κ = 0.935 for fCOI type and κ = 0.884 for payor identification.</p><p><strong>Results: </strong>Our analysis identified 21 fCOI types, 9 of which occurred at prevalences greater than 1%. These included research funding (24.8%), speaking fees (20.8%), consulting fees (18.8%), advisory relationships (11%), industry employment (7.6%), unspecified fees (4.8%), travel fees (3.2%), stock holdings (3.1%), and patent ownership (1%). Reported fCOI were held with 1,077 unique payors, 22 of which were present in more than 1% of financial relationships. The ten most common payors included Pfizer (4%), Novartis (3.9%), MSD (3.8%), Bristol Myers Squibb (3.2%), AstraZeneca (3.1%), GSK (3%), Boehringer Ingelheim (2.9%), Roche (2.8%), Eli LIlly (2.5%), and AbbVie (2.4%).</p><p><strong>Conclusions: </strong>These results provide novel multi-domain prevalence data on self-reported fCOI and payors in biomedical research. As such, they have the potential to catalyze future research that can assess the differential effects of various types of fCOI. Specifically, the data suggest that comparative analyses of the effects of different fCOI types are needed and that special attention should be paid to the diversity of payor types for research relationships.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"14 2","pages":"91-98"},"PeriodicalIF":0.0,"publicationDate":"2023-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10182247/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9502380","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}
引用次数: 0
A Critical Analysis of White Racial Framing and Comfort with Medical Research. 批判性分析白人种族框架和对医学研究的舒适度。
AJOB Empirical Bioethics Pub Date : 2023-04-01 Epub Date: 2023-01-03 DOI: 10.1080/23294515.2022.2160506
Paige Nong, Melissa Creary, Jodyn Platt, Sharon Kardia
{"title":"A Critical Analysis of White Racial Framing and Comfort with Medical Research.","authors":"Paige Nong, Melissa Creary, Jodyn Platt, Sharon Kardia","doi":"10.1080/23294515.2022.2160506","DOIUrl":"10.1080/23294515.2022.2160506","url":null,"abstract":"<p><strong>Objective: </strong>Analyze racial differences in comfort with medical research using an alternative to the traditional approach that treats white people as a raceless norm.</p><p><strong>Methods: </strong>Quantitative analysis of survey responses (n = 1,570) from Black and white residents of the US to identify relationships between perceptions of research as a right or a risk, and comfort participating in medical research.</p><p><strong>Results: </strong>A lower proportion of white respondents reported that medical experimentation occurred without patient consent (p < 0.001) and a higher proportion of white respondents reported that it should be their right to participate in medical research (p = 0.02). Belief in one's right to participate was significantly predictive of comfort (b = 0.37, p < 0.001). Belief in experimentation without consent was significantly predictive of comfort for white respondents but not for Black respondents in multivariable analysis.</p><p><strong>Conclusions: </strong>A rights-based orientation and less concern about the risks of medical research among white respondents demonstrate comparative advantage. Efforts to diversify medical research may perpetuate structural racism if they do not (1) critically engage with whiteness and its role in comfort with participation, and (2) identify and respond specifically to the needs of Black patients.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"14 2","pages":"65-73"},"PeriodicalIF":0.0,"publicationDate":"2023-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10182236/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9855371","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}
引用次数: 0
Offering and Returning Secondary Findings in the Context of Exome Sequencing for Hearing Loss: Clinicians' Views and Experiences. 在听力损失的外显子组测序的背景下提供和返回次要发现:临床医生的观点和经验。
AJOB Empirical Bioethics Pub Date : 2023-04-01 DOI: 10.1080/23294515.2022.2160507
Lauren Notini, Clara Gaff, Julian Savulescu, Danya F Vears
{"title":"Offering and Returning Secondary Findings in the Context of Exome Sequencing for Hearing Loss: Clinicians' Views and Experiences.","authors":"Lauren Notini,&nbsp;Clara Gaff,&nbsp;Julian Savulescu,&nbsp;Danya F Vears","doi":"10.1080/23294515.2022.2160507","DOIUrl":"https://doi.org/10.1080/23294515.2022.2160507","url":null,"abstract":"<p><strong>Background: </strong>There is ongoing debate regarding whether and under which circumstances secondary findings (SF) should be offered in the pediatric context. Although studies have examined patient perspectives on receiving SF, little research has been conducted examining the experiences of clinicians offering SF to parents of newborns receiving genomic sequencing for a recently diagnosed medical condition.</p><p><strong>Methods: </strong>To address this, we conducted qualitative interviews exploring the views and experiences of 12 clinicians who offered SF to parents of infants who had diagnostic exome sequencing (ES) to identify the cause of their hearing loss. Interviews explored clinicians' accounts of parents' choices and decision-making about receiving SF, their views on whether and when to offer SF, their experiences returning SF, and any ethical challenges they encountered. Interviews were audio-recorded, transcribed and analyzed using inductive content analysis.</p><p><strong>Results: </strong>Clinicians reported parents who declined all SF often felt finding out about future conditions unrelated to their child's hearing loss may be unhelpful, or even harmful, or were overwhelmed by their child's diagnosis. Clinicians also reported that some parents chose SF because they felt obliged to, even if they did not want to receive them. They explained that while some parents experienced decision-making regarding SF as positive, for others, this process was challenging or distressing. While clinicians generally agreed SF should be offered, mainly to promote parental choice, most felt SF should be offered after disclosing diagnostic results, primarily to avoid overwhelming parents. Clinicians encountered several ethical challenges, including balancing parental autonomy with non-maleficence, wanting to report or not report certain SF, and questioning whether parents can make an autonomous choice regarding SF.</p><p><strong>Conclusions: </strong>Our findings, which are novel as they relate to parents of young infants with a recent diagnosis of hearing loss, add new insights into clinicians' and parents' decision-making regarding SF in pediatrics.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"14 2","pages":"74-83"},"PeriodicalIF":0.0,"publicationDate":"2023-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9855368","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}
引用次数: 1
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