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My46:一种用于在研究和临床环境中对基因组检测结果进行自我指导管理的基于网络的工具。

My46: a Web-based tool for self-guided management of genomic test results in research and clinical settings.

作者信息

Tabor Holly K, Jamal Seema M, Yu Joon-Ho, Crouch Julia M, Shankar Aditi G, Dent Karin M, Anderson Nick, Miller Damon A, Futral Brett T, Bamshad Michael J

机构信息

Department of Pediatrics, University of Washington, Seattle, Washington, USA.

Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, USA.

出版信息

Genet Med. 2017 Apr;19(4):467-475. doi: 10.1038/gim.2016.133. Epub 2016 Sep 15.

DOI:10.1038/gim.2016.133
PMID:27632689
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5352554/
Abstract

A major challenge to implementing precision medicine is the need for an efficient and cost-effective strategy for returning individual genomic test results that is easily scalable and can be incorporated into multiple models of clinical practice. My46 is a Web-based tool for managing the return of genetic results that was designed and developed to support a wide range of approaches to disclosing results, ranging from traditional face-to-face disclosure to self-guided models. My46 has five key functions: set and modify results-return preferences, return results, educate, manage the return of results, and assess the return of results. These key functions are supported by six distinct modules and a suite of features that enhance the user experience, ease site navigation, facilitate knowledge sharing, and enable results-return tracking. My46 is a potentially effective solution for returning results and supports current trends toward shared decision making between patients and providers and patient-driven health management.Genet Med 19 4, 467-475.

摘要

实施精准医学的一个主要挑战是需要一种高效且具有成本效益的策略来返还个体基因组检测结果,这种策略要易于扩展,并能融入多种临床实践模式。My46是一个基于网络的管理基因检测结果返还的工具,其设计和开发旨在支持从传统面对面告知到自我引导模式等广泛的结果披露方法。My46有五个关键功能:设置和修改结果返还偏好、返还结果、开展教育、管理结果返还以及评估结果返还。这些关键功能由六个不同模块和一套增强用户体验、简化网站导航、促进知识共享并实现结果返还跟踪的功能特性来支持。My46是返还结果的一个潜在有效解决方案,并支持患者与医疗服务提供者之间共同决策以及患者驱动的健康管理的当前趋势。《基因医学》第19卷第4期,467 - 475页 。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c63e/5352554/06862cf19938/nihms807712f5.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c63e/5352554/ac34c13f8ce8/nihms807712f1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c63e/5352554/de8dad41b8df/nihms807712f2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c63e/5352554/834f98040006/nihms807712f3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c63e/5352554/4bb745f22b84/nihms807712f4.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c63e/5352554/06862cf19938/nihms807712f5.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c63e/5352554/ac34c13f8ce8/nihms807712f1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c63e/5352554/de8dad41b8df/nihms807712f2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c63e/5352554/834f98040006/nihms807712f3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c63e/5352554/4bb745f22b84/nihms807712f4.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c63e/5352554/06862cf19938/nihms807712f5.jpg

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Potential research participants support the return of raw sequence data.潜在的研究参与者支持原始序列数据的返还。
J Med Genet. 2015 Aug;52(8):571-4. doi: 10.1136/jmedgenet-2015-103119. Epub 2015 May 20.
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Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.
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BMJ Open. 2024 Sep 3;14(9):e090084. doi: 10.1136/bmjopen-2024-090084.
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Ethical, legal, and social implications (ELSI) and challenges in the design of a randomized controlled trial to test the online return of cancer genetic research results to U.S. Black women.伦理、法律和社会影响(ELSI)以及设计一项随机对照试验以测试美国黑人女性癌症遗传研究结果在线返还的挑战。
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