AJOB Empirical Bioethics最新文献_第4页

A Vision for Empirical ELSI along the R&D Pipeline. 沿着研发管道进行经验性 ELSI 的愿景。

AJOB Empirical Bioethics Pub Date : 2024-04-01 Epub Date: 2024-01-12 DOI: 10.1080/23294515.2023.2297931

Ramya M Rajagopalan, Julie Cakici, Cinnamon S Bloss

引用次数: 0

Patient Perceptions on the Advancement of Noninvasive Prenatal Testing for Sickle Cell Disease among Black Women in the United States. 患者对美国黑人妇女镰状细胞病无创产前检查进展的看法。

AJOB Empirical Bioethics Pub Date : 2024-04-01 Epub Date: 2024-02-13 DOI: 10.1080/23294515.2024.2302996

Shameka P Thomas, Faith E Fletcher, Rachele Willard, Tiara Monet Ranson, Vence L Bonham

{"title":"Patient Perceptions on the Advancement of Noninvasive Prenatal Testing for Sickle Cell Disease among Black Women in the United States.","authors":"Shameka P Thomas, Faith E Fletcher, Rachele Willard, Tiara Monet Ranson, Vence L Bonham","doi":"10.1080/23294515.2024.2302996","DOIUrl":"10.1080/23294515.2024.2302996","url":null,"abstract":"Background: Noninvasive prenatal testing (NIPT) designed to screen for fetal genetic conditions, is increasingly being implemented as a part of routine prenatal care screening in the United States (US). However, these advances in reproductive genetic technology necessitate empirical research on the ethical and social implications of NIPT among populations underrepresented in genetic research, particularly Black women with sickle cell disease (SCD).Methods: Forty (N = 40) semi-structured interviews were conducted virtually with Black women in the US (19 participants with SCD; 21 participants without SCD) from June 2021 to January 2022. We employed a qualitative approach to examine the study participants' perceptions of the potential advancement of NIPT for screening SCD in the fetus. Data were analyzed using NVivo 12 qualitative software.Results: The themes revealed the complexities involving the intersectional lived experiences of SCD, prenatal care, lack of synergy among health providers, and NIPT decision-making. The results further revealed that even when Black women have shared commonalities in their lived experiences while navigating SCD and motherhood, their perceptions of NIPT screening technologies are divergent.Conclusion: Expanding the ethical discourse on the social implications of NIPT is critical to fully elucidate how Black women perceive NIPT's utility, particularly as NIPT advances to screen for SCD in the fetus. Neglecting to include Black women with genetic conditions in empirical studies on NIPT may contribute to ongoing health inequities and limit and constrain reproductive choices among Black women with and without SCD.","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"154-163"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139724356","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

Spotlighting Structural Constraints on Decisions About Participation in Genomic and Precision Medicine. 聚焦参与基因组和精准医疗决策的结构性制约因素。

AJOB Empirical Bioethics Pub Date : 2024-04-01 Epub Date: 2024-05-22 DOI: 10.1080/23294515.2024.2355893

Deanne Dunbar Dolan, Mildred K Cho, Sandra Soo-Jin Lee

引用次数: 0

Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa. 家长和医疗服务提供者对非洲裂隙家庭基因组研究结果返还的看法。

AJOB Empirical Bioethics Pub Date : 2024-04-01 Epub Date: 2024-01-18 DOI: 10.1080/23294515.2024.2302993

Abimbola M Oladayo, Sydney Prochaska, Tamara Busch, Wasiu L Adeyemo, Lord J J Gowans, Mekonen Eshete, Waheed Awotoye, Veronica Sule, Azeez Alade, Adebowale A Adeyemo, Peter A Mossey, Anya Prince, Jeffrey C Murray, Azeez Butali

{"title":"Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa.","authors":"Abimbola M Oladayo, Sydney Prochaska, Tamara Busch, Wasiu L Adeyemo, Lord J J Gowans, Mekonen Eshete, Waheed Awotoye, Veronica Sule, Azeez Alade, Adebowale A Adeyemo, Peter A Mossey, Anya Prince, Jeffrey C Murray, Azeez Butali","doi":"10.1080/23294515.2024.2302993","DOIUrl":"10.1080/23294515.2024.2302993","url":null,"abstract":"Background: Inadequate knowledge among health care providers (HCPs) and parents of affected children limits the understanding and utility of secondary genetic findings (SFs) in under-represented populations in genomics research. SFs arise from deep DNA sequencing done for research or diagnostic purposes and may burden patients and their families despite their potential health importance. This study aims to evaluate the perspective of both groups regarding SFs and their choices in the return of results from genetic testing in the context of orofacial clefts.Methods: Using an online survey, we evaluated the experiences of 252 HCPs and 197 parents across participating cleft clinics in Ghana and Nigeria toward the return of SFs across several domains.Results: Only 1.6% of the HCPs felt they had an expert understanding of when and how to incorporate genomic medicine into practice, while 50.0% agreed that all SFs should be returned to patients. About 95.4% of parents were willing to receive all the information from genetic testing (including SFs), while the majority cited physicians as their primary information source (64%).Conclusions: Overall, parents and providers were aware that genetic testing could help in the clinical management of diseases. However, they cited a lack of knowledge about genomic medicine, uncertain clinical utility, and lack of available learning resources as barriers. The knowledge gained from this study will assist with developing guidelines and policies to guide providers on the return of SFs in sub-Saharan Africa and across the continent.","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"133-146"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11153024/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139492355","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

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":"Background: 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.Methods: 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.Results: 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.Conclusion: 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.","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":"Background: 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).Methods: 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.Results: 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.Conclusions: 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.","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":"Background: 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.Methods: 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.Results: 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.Conclusions: 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.","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":"Background: 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.Methods: 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.Results: 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.Conclusion: 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.","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":"Background: 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.Methods: 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.Results: 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.Conclusions: 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.","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":"Background: 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.Methods: 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.Results: 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.Conclusions: 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.","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