The Meaning of Informed Consent: Genome Editing Clinical Trials for Sickle Cell Disease [0.03%]
知情同意的意义：镰状细胞疾病的基因编辑临床试验
Stacy Desine,Brittany M Hollister,Khadijah E Abdallah et al.
Stacy Desine et al.
A first therapeutic target of somatic genome editing (SGE) is sickle cell disease (SCD), the most commonly inherited blood disorders, affecting more than 100,000 individuals in the United States. Advancement of SGE is contingent on patient ...
Old Challenges or New Issues? Genetic Health Professionals' Experiences Obtaining Informed Consent in Diagnostic Genomic Sequencing [0.03%]
新的挑战还是旧的问题？遗传健康专业人士在诊断基因组测序中获得知情同意的经历
Danya F Vears,Pascal Borry,Julian Savulescu et al.
Danya F Vears et al.
Background: While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analy...
How Biomedical Citizen Scientists Define What They Do: It's All in the Name [0.03%]
生物医学公民科学家如何定义他们的工作：关键在于名称的定义
Meredith Trejo,Isabel Canfield,Jill O Robinson et al.
Meredith Trejo et al.
Background: As citizen science continues to grow in popularity, there remains disagreement about what terms should be used to describe citizen science activities and participants. The question of how to self-identify has ...
"It's Just Another Added Benefit": Women's Experiences with Employment-Based Egg Freezing Programs [0.03%]
“这只是另一个附加的好处”：女性在工作中有关冻卵项目的体验
S A Miner,W K Miller,C Grady et al.
S A Miner et al.
In 2014, companies began covering the costs of egg freezing for their employees. The adoption of this benefit was highly contentious. Some argued that it offered women more reproductive autonomy, buying time to succeed in their careers and ...
Exception From Informed Consent: How IRB Reviewers Assess Community Consultation and Public Disclosure [0.03%]
知情同意的例外：IRB审查者如何评估社区咨询和公开披露
Makini Chisolm-Straker,Denise Nassisi,Mohamud R Daya et al.
Makini Chisolm-Straker et al.
Exception from Informed Consent (EFIC) regulations detail specific circumstances in which Institutional Review Boards (IRB) can approve studies where obtaining informed consent is not possible prior to subject enrollment. To better understa...
Participant Reactions to a Literacy-Focused, Web-Based Informed Consent Approach for a Genomic Implementation Study [0.03%]
针对基因实施研究中以识字为中心的网络知情同意方法参与者反应的研究
Stephanie A Kraft,Kathryn M Porter,Devan M Duenas et al.
Stephanie A Kraft et al.
Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinica...
Reducing the Single IRB Burden: Streamlining Electronic IRB Systems [0.03%]
减少单一机构审查委员会的负担：简化电子机构审查委员会系统
Alexandra Murray,Ekaterina Pivovarova,Robert Klitzman et al.
Alexandra Murray et al.
Electronic institutional review board systems (eIRBs) have become an integral component in ensuring compliance with Human Research Protection Program (HRPP) and IRB requirements. Despite this, few of these systems are configured to administ...
Ethical, Legal, and Social Issues (ELSI) of Responsible Data Sharing Involving Children in Genomics: A Systematic Literature Review of Reasons [0.03%]
基因组学中涉及儿童的数据共享的伦理，法律和社会问题（ELSI）：关于原因的系统性文献回顾
Vasiliki Rahimzadeh,Bartha Maria Knoppers,Gillian Bartlett
Vasiliki Rahimzadeh
Progress in precision medicine relies on the access to, use of, and exchange of genomic and associated clinical data, including from children. The ethical, legal, and social issues (ELSI) of such data access, use, and exchange may be accent...
Unplanned Cesarean Birth: Can the Quality of Consent Affect Birth Experiences? [0.03%]
非计划性剖宫产：同意的质量会影响分娩体验吗？
Paul Burcher,Shazneen Hushmendy,Meredith Chan-Mahon et al.
Paul Burcher et al.
Unplanned cesarean birth is associated with high levels of patient dissatisfaction and negative birth experiences, which in turn can negatively impact birth outcomes. Previous research has demonstrated that issues of physician-patient commu...
Randomized Controlled Trial
AJOB empirical bioethics. 2020 Oct-Dec;11(4):268-274. DOI:10.1080/23294515.2020.1817174 2020
Perspectives on Precision Medicine in a Tribally Managed Primary Care Setting [0.03%]
部落管理的初级保健环境中精准医学的展望
Julie A Beans,R Brian Woodbury,Kyle A Wark et al.
Julie A Beans et al.
Background: Precision medicine (PM) research and clinical application is moving forward at a rapid pace. To ensure ethical inclusion of all populations in PM, in-depth understanding of diverse communities' views of PM res...