Capturing Perceived Utility from Qualitative Studies of Genomic Sequencing: Translating a Conceptual Model into a Working Codebook [0.03%]
从基因组测序的定性研究中捕获感知效用：将概念模型转化为工作代码簿
Betty Cohn,Tesla Theoryn,Olivia Sommerland et al.
Betty Cohn et al.
Introduction: As genomic sequencing (GS) is integrated into clinical medicine, understanding how patients and families perceive its utility is critical. Conceptual models for perceived utility have been developed, however...
Who Receives Ethics Consultations? An Analysis of Racial and Ethnic Characteristics of an Ethics Consult Service in an Urban Academic Medical Center [0.03%]
哪些人接受伦理咨询？分析城市教学医院伦理咨询中服务对象的种族和族裔特征
Vivian Kim,Adira Hulkower,Elizabeth Chuang
Vivian Kim
Background: In healthcare settings, it is crucial to understand the identities of patients receiving services, both for cultural considerations and to identify and prevent disparities in care. ...
"I Have Someone's Life in my Hands": How Cancer Care Partners Experience and Navigate Moral Challenges [0.03%]
“我手中握着一个人的生命”——肿瘤患者的看护者是如何体验并应对道德困境的
Clare Whitney,Jane Evered,Fiona Larsson et al.
Clare Whitney et al.
Background: Cancer care partners (also known as caregivers or caretakers) are individuals without formal training or experience in cancer care who provide health or social support to others with cancer. Care partners are ...
"It's an Uphill Battle. We Have a Long Way to Go": Perspectives of Canadian Individuals Living with Genetic Conditions Detectable by Prenatal Cell-Free DNA Screening [0.03%]
“这是一场艰难的斗争。我们还有很长的路要走”——加拿大携带可通过产前细胞游离DNA筛查检测到的遗传病致病基因突变患者的治疗体验与看法
Mathilde Cassou,Vardit Ravitsky,Anne-Marie Laberge
Mathilde Cassou
Background: In Canada, prenatal cell-free DNA screening is mainly used as a second-tier screening test that targets specific aneuploidies, namely trisomy 21, 18 and 13. ...
Psychological Harms of HIV Vaccine Trial Participation in Tanzania: Could Post-Trial Participants Engagement Help? [0.03%]
坦桑尼亚HIV疫苗试验参与者的精神创伤：能否通过参与试验后的干预来解决？
Judith Shayo,Amani Anaeli,David Urassa et al.
Judith Shayo et al.
Background: Global health researchers are celebrating notable success in their efforts to develop preventive vaccines to curb the human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) pandemic. ...
Canadian Medical Assistance in Dying (MAID) and Access to Resources: An Analysis of Media Reports [0.03%]
加拿大医疗辅助死亡制度与资源可及性问题：基于媒体报道的分析
Anurima Chattopadhyay,Yukiko Asada,Leslie Anne Campbell et al.
Anurima Chattopadhyay et al.
Background: In Canada, individuals are eligible for medical assistance in dying (MAID) even if they would prefer, but lack access to, standard treatments or resources that would alleviate their suffering. The government d...
Do Reasons Matter? An Empirical Exploration of the Role of Parents' Reasons in Treatment Refusal in Pediatric Oncology [0.03%]
理由重要吗？一项关于父母拒绝儿童肿瘤学治疗的原因的实证研究
Amy Caruso Brown,Bryanna Moore,Lynn Gillam
Amy Caruso Brown
Background: Accepted ethical principles in pediatrics hold that parents' reasons should not matter to determining ethical boundaries: it is the decision's effect on the child that matters. However, there is ongoing discus...
Nicholas Peoples,Alexandra Alvarez,Shiwei Wang et al.
Nicholas Peoples et al.
Background: Student-run clinics (SRCs) are a unique medical education and healthcare delivery model. On one hand, SRCs have the potential to bridge important care gaps and train future practitioners to address complex hea...
Ethical Considerations for AI-Enabled Voice Analysis: Features of an Emerging Bioethics Literature [0.03%]
人工智能驱动的声音分析的伦理考量：一种新兴生物伦理学文献的特点
Michele D Anzabi,Austin M Stroud,Richard R Sharp
Michele D Anzabi
Background: With the emergence of voice as a digital biomarker for various health conditions over the last decade, healthcare institutions are exploring avenues to leverage this technology to improve patient outcomes and ...
Differences Between Government, Consortium, and Private Database Stewards Impacting the Genomic Data Market: A Survey of U.S. Academic Genetic Researchers [0.03%]
美国学术遗传学家对政府、联盟和私人数据库管理者影响基因数据市场差异的看法调查
Amanda K Greene,J Denard Thomas,Kaitlyn Jaffe et al.
Amanda K Greene et al.
Background: Despite major shifts in U.S. federal government data sharing requirements, their impact, and relation to researcher choice of database, are underexplored. This study surveyed genetic researchers regarding tren...