Morally Problematic Situations Encountered by Adults Living With Rare Diseases [0.03%]
罕见病成人患者面临道德困境的情形研究
Ariane Quintal,Élissa Hotte,Annie-Danielle Grenier et al.
Ariane Quintal et al.
Background: Rare diseases are generally poorly understood from scientific and medical standpoints due, to their complexity and low prevalence. As a result, individuals living with rare diseases struggle to obtain timely d...
Clinician Perspectives on Opioid Treatment Agreements: A Qualitative Analysis of Focus Groups [0.03%]
阿片类药物治疗协议的临床医生观点：焦点小组的定性分析
Nathan Richards,Martin Fried,Larisa Svirsky et al.
Nathan Richards et al.
Background: Patients with chronic pain face significant barriers in finding clinicians to manage long-term opioid therapy (LTOT). For patients on LTOT, it is increasingly common to have them sign opioid treatment agreemen...
Interrogating the Value of Return of Results for Diverse Populations: Perspectives from Precision Medicine Researchers [0.03%]
精准医疗研究人员关于面向多样性人群的成果汇报价值的见解
Caitlin E McMahon,Nicole Foti,Melanie Jeske et al.
Caitlin E McMahon et al.
Background: Over the last decade, the return of results (ROR) in precision medicine research (PMR) has become increasingly routine. Calls for individual rights to research results have extended the "duty to report" from c...
Informed Consent among Clinical Trial Participants with Different Cancer Diagnoses [0.03%]
不同癌症诊断的临床试验参与者之间的知情同意书
Connie M Ulrich,Sarah J Ratcliffe,Camille J Hochheimer et al.
Connie M Ulrich et al.
Importance: Informed consent is essential to ethical, rigorous research and is important to recruitment and retention in cancer trials. Objective: ...
Should HIV Vaccines Be Made Available at No or Subsidized Cost? A Qualitative Inquiry of HIV Vaccine Trial Stakeholders in Tanzania [0.03%]
坦桑尼亚HIV疫苗受试者的定性研究：HIV疫苗应免费或补贴提供吗？
Godwin Pancras,Mangi Ezekiel,Erasto Mbugi et al.
Godwin Pancras et al.
Background: The world has come closer than ever to discovering a viable HIV vaccine. However, it remains less certain whether HIV vaccines should be made available to participants and communities in which trials are run n...
Multi-Level Ethical Considerations of Artificial Intelligence Health Monitoring for People Living with Parkinson's Disease [0.03%]
针对帕金森病患者的人工智能健康监测的多层级伦理考量
Anita Ho,Itai Bavli,Ravneet Mahal et al.
Anita Ho et al.
Artificial intelligence (AI) has garnered tremendous attention in health care, and many hope that AI can enhance our health system's ability to care for people with chronic and degenerative conditions, including Parkinson's Disease (PD). Th...
Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders [0.03%]
迈向分子HIV监测的知情同意？关键利益攸关方的观点
Stephen Molldrem,Anthony K J Smith,Vishnu Subrahmanyam
Stephen Molldrem
Background: 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 surveil...
Frequency of Perceived Conflict between Families and Clinicians at Time of Clinical Ethics Consultation in Hospitalized Children [0.03%]
住院儿童临床伦理咨询时家庭与临床医生之间感知冲突的频率
Aleksandra E Olszewski,Chuan Zhou,Jiana Ugale et al.
Aleksandra E Olszewski et al.
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. ...
Expert Views on Medical Involvement in the Swiss Assisted Dying Practice: "We Want to Have Our Cake and Eat It Too"? [0.03%]
专家观点：瑞士协助自杀实践中医务人员的参与情况——“鱼与熊掌兼得”？
Christina Nyquist,Raphael Cohen-Almagor,Scott Y H Kim
Christina Nyquist
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 i...
Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository [0.03%]
关于青少年和儿童基因组研究库中儿童父母的基因隐私和数据共享态度比较的研究
Courtney Berrios,Shelby Neal,Tricia Zion et al.
Courtney Berrios et al.
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 ...