What Is "Key Information"? Consideration of the Reasons People Do or Do Not Take Part in Research [0.03%]
什么是“关键信息”？考虑人们参加或不参加研究的原因
Kara Berwanger,Jon F Merz
Kara Berwanger
We performed a qualitative review of 50 consent forms posted on Clinicaltrials.gov, examining the content of key information sections. We found that key information disclosures are typically focused on procedures, risks, potential benefits,...
Translational Research and Health Equity: Gene Therapies for Sickle Cell Disease as a Case Study [0.03%]
转化研究与健康公平性：以镰状细胞病的基因治疗为例
Mary A Majumder,Titilope Fasipe
Mary A Majumder
In August of 2023, the National Academies of Science, Engineering, and Medicine published a timely report titled "Toward Equitable Innovation in Health and Medicine: A Framework." Here, we review some of the key contributions of the report,...
Navigating University Openness in Research Policy Inconsistent with Indigenous Data Sovereignty: A Case Analysis [0.03%]
大学研究政策中的开放性与原住民数据主权不一致的导航问题：一个案例分析
Molly Wick,Deanna Erickson,Joel Hoffman et al.
Molly Wick et al.
Indigenous nations and communities in the United States have rights as sovereign governments to exercise control and ownership over all data and information generated by or from the tribes, tribal members, or tribal resources. Indigenous na...
Returning Clinically Relevant Research Results to Participants: Guidelines for Investigators and the IRB [0.03%]
向参与者反馈具有临床意义的研究结果：针对研究者和机构审查委员会的指导原则
Amy Waltz,Bethany Johnson,Peter H Schwartz
Amy Waltz
In 2019, the revised Common Rule required informed consent documents for research to include a statement about whether clinically relevant research results would be returned to research participants. While there are national discussions reg...
Bruce G Gordon,Abigail E Lowe,Christopher J Kratochvil
Bruce G Gordon
How research during a public health emergency is conducted is recognized as essential to the public health response to that emergency. Such research needs to undergo substantive and meaningful ethical review in a timely manner. Rapid ethica...
David B Resnik,Alison Antes,Jessica Mozersky
David B Resnik
It is a common practice in qualitative research to transcribe audio or video files from interviews or focus groups and then destroy the files at some future time, usually after validating the transcript or concluding the research. We argue ...
Published Erratum
Ethics & human research. 2024 Jan-Feb;46(1):13. DOI:10.1002/eahr.500200 2024
Moving to the Middle Ground: Redefining Genomic Utility to Expand Understanding of Familial Benefit [0.03%]
向中间地带移动：重新定义基因组效用以扩大对家庭利益的理解
Kyle B Brothers,Greg M Cooper,Katelyn C McNamara et al.
Kyle B Brothers et al.
Translational research has tended to ignore the question of whether receiving a genomic diagnosis provides utility in community care contexts outside of doctors' offices and hospitals. However, empirical research with parents has highlighte...
Participant Misrepresentation in Online Focus Groups: Red Flags and Proactive Measures [0.03%]
在线焦点小组中的参与者不实表现：预警信号和预防措施
Lesley Andrew,Emily Gizzarelli,Mohamed Estai et al.
Lesley Andrew et al.
Covid-19 public health measures prompted a significant increase in online research. This approach has several benefits over face-to-face data-collection methods, including lower cost and wider geographical reach of participants. Yet when th...
Institutional Review Boards' Assessment of Local Context: A Mixed Methods Study [0.03%]
机构审查委员会对当地环境的评估：一项混合研究方法的研究
Timothy C Guetterman,Adrianne Haggins,Sacha Montas et al.
Timothy C Guetterman et al.
The nature of the review of local context by institutional review boards (IRBs) is vague. Requirements for single IRB review of multicenter trials create a need to better understand interpretation and implementation of local-context review ...