Investigator and participant expectations for returning non-genetic results: insights from the Rare and Atypical Diabetes Network (RADIANT) study.
Investigator and participant expectations for returning non-genetic results: insights from the Rare and Atypical Diabetes Network (RADIANT) study.
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DOI：
10.1017/cts.2023.684
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发表时间：
2023
影响因子：
2.6
通讯作者：
Ross, Lainie Friedman
中科院分区：
文献类型：
--
作者：
Noohi, Forough;Sundaresan, Manu S.;Naylor, Rochelle N.;Ross, Lainie Friedman
关键词：
罕见和非典型糖尿病网络（RADIANT）旨在通过进行基因分型和非遗传深层表型来发现非典型糖尿病的潜在病因。虽然研究机构对基因检测结果的返还进行了调查，但非基因结果的返还（RoR-NG）受到的关注较少。我们与RADIANT研究人员和参与者一起探索RoR-NG。我们对10名成人RADIANT参与者和10名RADIANT研究人员进行了一对一的访谈。参与者还完成了两个健康知识筛查工具和一项关于结果返回（RoR）的观点的调查。研究者完成了一项关于解释RADIANT研究中使用的临床试验的经验和信心的调查，以及另一项关于RoR观点的调查。大多数参与者是非西班牙裔白色。所有参与者都在健康素养筛查中获得高分。RADIANT参与者和研究人员都对RoR-NG表示强烈支持。RADIANT参与者和研究人员承认研究和临床护理在解释和处理非遗传结果方面的不同作用和责任。然而，临床护理和研究之间的界限，在返回和采取行动的结果往往是模糊的参与者和研究人员。我们的研究提供了重要的见解，研究人员和参与者如何同时区分和模糊临床和研究的角色和责任时，讨论非遗传研究结果和这些结果的回报。进一步的研究应该让来自不同种族和民族背景以及不同健康素养水平的个人参与，以了解如何在返回研究结果时最好地支持所有参与者。
The Rare and Atypical DIAbetes NeTwork (RADIANT) aims to discover the underlying pathoetiology of atypical diabetes by conducting both genotyping and non-genetic deep phenotyping. While the return of genetic test results in research settings has been investigated, the return of non-genetic results (RoR-NG) has received less attention. We explore the RoR-NG with RADIANT investigators and participants. We conducted one-on-one interviews with 10 adult RADIANT participants and 10 RADIANT investigators. Participants also completed two health literacy screening tools and a survey on perspectives regarding return of results (RoR). Investigators completed one survey on experience and confidence in explaining clinical tests utilized in the RADIANT study and another survey on perspectives regarding RoR. Most participants were non-Hispanic White. All participants had high scores on health literacy screens. Both RADIANT participants and investigators expressed strong support for RoR-NG. RADIANT participants and investigators acknowledged the different roles and responsibilities between research and clinical care for interpreting and acting on non-genetic results. However, the lines between clinical care and research in returning and acting on results were often blurred by both participants and investigators. Our study provides important insight into how both investigators and participants simultaneously distinguish and blur clinical and research roles and responsibilities when discussing non-genetic research results and the return of these results. Further study should engage individuals from diverse racial and ethnic backgrounds and with varying levels of health literacy to understand how best to support all participants when returning research results.
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