Developing a conceptual, reproducible, rubric-based approach to consent and result disclosure for genetic testing by clinicians with minimal genetics background.,Genetics in Medicine

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Developing a conceptual, reproducible, rubric-based approach to consent and result disclosure for genetic testing by clinicians with minimal genetics background.
Genetics in Medicine ( IF 8.8 ) Pub Date : 2018-Jul-06 , DOI: 10.1038/s41436-018-0093-6
Kelly E Ormond ₁ , Miranda L G Hallquist ₂ , Adam H Buchanan ₂ , Danielle Dondanville ₃ , Mildred K Cho ₄ , Maureen Smith ₅ , Myra Roche ₆ , Kyle B Brothers ₇ , Curtis R Coughlin ₈ , Laura Hercher ₉ , Louanne Hudgins ₁₀ , Seema Jamal ₁₁ , Howard P Levy ₁₂ , Misha Raskin _{2,

13} , Melissa Stosic ₁₄ , Wendy Uhlmann ₁₅ , Karen E Wain ₂ , Erin Currey ₁₆ , W Andrew Faucett ₂

Affiliation

Department of Genetics and Stanford Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, California, USA.
Geisinger, 100 North Academy Avenue, Danville, Pennsylvania, 17822, USA.
Department of Genetics, Stanford University School of Medicine, Stanford, California, USA.
Stanford Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, California, USA.
Northwestern University, Evanston, Illinois, USA.
Departments of Pediatrics and Genetics, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Department of Pediatrics, University of Louisville, Louisville, Kentucky, USA.
Department of Pediatrics, Center for Bioethics and Humanities, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Sarah Lawrence College, Bronxville, New York, USA.
Division of Medical Genetics, Department of Pediatrics, Stanford University School of Medicine, Stanford, California, USA.
GeneDx, 207 Perry Pkwy, Gaithersburg, Maryland, 20877, USA.
Johns Hopkins University, Baltimore, Maryland, USA.
Helix, 3505 West Sam Houston Parkway North Suite 400, Houston, Texas, 77043, USA.
Columbia University, New York, New York, USA.
University of Michigan, Ann Arbor, Michigan, USA.
National Human Genome Research Institute, NIH, Bethesda, Maryland, USA.

In response to genetic testing being widely ordered by nongenetics clinicians, the Consent and Disclosure Recommendations (CADRe) Workgroup of the Clinical Genome Resource (ClinGen; clinicalgenome.org ) developed guidance to facilitate communication about genetic testing and efficiently improve the patient experience. Considering ethical, legal, and social implications, and medical factors, CADRe developed and pilot tested two rubrics addressing consent for genetic testing and results disclosure. The CADRe rubrics allow for adjusting the communication approach based on circumstances specific to patients and ordering clinicians.

中文翻译：

开发一种概念性的、可重复的、基于规则的方法，以允许具有最少遗传学背景的临床医生进行基因检测的同意和结果披露。

为了响应非遗传学临床医生广泛订购的基因检测，临床基因组资源（ClinGen；clinicalgenome.org）的同意和披露建议 (CADRe) 工作组制定了指南，以促进有关基因检测的交流并有效改善患者体验。考虑到伦理、法律和社会影响以及医学因素，CADRe 开发并试点测试了两个准则，以解决基因测试和结果披露的同意问题。CADRe 规则允许根据患者的具体情况和命令临床医生调整沟通方式。

更新日期：2018-07-08

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