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

被引:26
作者
Tabor, Holly K. [1 ,2 ]
Jamal, Seema M. [3 ,4 ]
Yu, Joon-Ho [1 ]
Crouch, Julia M. [2 ]
Shankar, Aditi G. [1 ]
Dent, Karin M. [5 ]
Anderson, Nick [6 ]
Miller, Damon A. [7 ]
Futral, Brett T. [7 ]
Bamshad, Michael J. [1 ,8 ]
机构
[1] Univ Washington, Dept Pediat, Seattle, WA 98195 USA
[2] Seattle Childrens Res Inst, Treuman Katz Ctr Pediat Bioeth, Seattle, WA USA
[3] Univ Toronto, Dept Mol Genet, Toronto, ON, Canada
[4] Hosp Sick Children, Dept Paediat Lab Med, Toronto, ON, Canada
[5] Univ Utah, Dept Pediat, Salt Lake City, UT USA
[6] Univ Calif Davis, Dept Publ Hlth Sci, Sacramento, CA 95817 USA
[7] Catalyst IT Serv, Beaverton, OR USA
[8] Univ Washington, Dept Genome Sci, Seattle, WA 98195 USA
基金
美国国家卫生研究院;
关键词
exome sequencing; genome sequencing; incidental; results return; secondary results; RESEARCH PARTICIPANTS; RETURN; EXOME; INFORMATION;
D O I
10.1038/gim.2016.133
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
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.
引用
收藏
页码:467 / 475
页数:9
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