Why Patients Decline Genomic Sequencing Studies: Experiences from the CSER Consortium.

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第一作者： Laura M,Amendola

第一单位： Division of Medical Genetics, Department of Medicine, University of Washington, Seattle, WA, USA. Lauraa7@uw.edu.

作者： Laura M,Amendola ^[1] ; Jill O,Robinson ^[2] ; Ragan,Hart ^[3] ; Sawona,Biswas ^[4] ; Kaitlyn,Lee ^[2] ; Barbara A,Bernhardt ^[5] ; Kelly,East ^[6] ; Marian J,Gilmore ^[7] ; Tia L,Kauffman ^[8] ; Katie L,Lewis ^[9] ; Myra,Roche ^[10] ; Sarah,Scollon ^[11] ; Julia,Wynn ^[12] ; Carrie,Blout ^[13]

作者单位： Division of Medical Genetics, Department of Medicine, University of Washington, Seattle, WA, USA. Lauraa7@uw.edu. ^[1] Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, 77030, USA. ^[2] Division of Medical Genetics, Department of Medicine, University of Washington, Seattle, WA, USA. ^[3] Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, PA, 19104, USA.;Division of Translational Medicine and Human Genetics, Department of Medicine, Perelman School of Medicine at The University of Pennsylvania, Philadelphia, PA, 19104, USA. ^[4] Division of Translational Medicine and Human Genetics, Department of Medicine, Perelman School of Medicine at The University of Pennsylvania, Philadelphia, PA, 19104, USA. ^[5] HudsonAlpha Institute for Biotechnology, Huntsville, AL, 35806, USA. ^[6] Department of Medical Genetics, Kaiser Permanente Northwest, Portland, OR, 97227, USA. ^[7] Center for Health Research, Kaiser Permanente Northwest, Portland, OR, 97227, USA. ^[8] Medical Genomics and Metabolic Genetics Branch, National Human Genome Research Institute, Bethesda, MD, 20892, USA. ^[9] Departments of Pediatrics and Genetics, University of North Carolina-Chapel Hill, Chapel Hill, NC, 27599, USA. ^[10] Department of Pediatrics, Baylor College of Medicine, Houston, TX, 77030, USA. ^[11] Department of Pediatrics, Columbia University, New York, NY, 10032, USA. ^[12] Division of Genetics, Department of Medicine, Brigham and Women's Hospital, Boston, MA, 02115, USA. ^[13]

关键词 Clinical Sequencing Exploratory Research (CSER) consortium Exome sequencing Genome sequencing Rate of decline Reason for decline

主题词成年人(Adult);女(雌)性(Female);基因检测(Genetic Testing);人类(Humans);男(雄)性(Male);病人接受卫生保健的程度(Patient Acceptance of Health Care)

DOI 10.1007/s10897-018-0243-7

PMID 29497922

发布时间 2023-06-01

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