Developing a conceptual, reproducible, rubric-based approach to consent and result disclosure for genetic testing by clinicians with minimal genetics background View Full Text


Ontology type: schema:ScholarlyArticle     


Article Info

DATE

2019-03

AUTHORS

Kelly E. Ormond, Miranda L. G. Hallquist, Adam H. Buchanan, Danielle Dondanville, Mildred K. Cho, Maureen Smith, Myra Roche, Kyle B. Brothers, Curtis R. Coughlin, Laura Hercher, Louanne Hudgins, Seema Jamal, Howard P. Levy, Misha Raskin, Melissa Stosic, Wendy Uhlmann, Karen E. Wain, Erin Currey, W. Andrew Faucett

ABSTRACT

PURPOSE: 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. METHODS: We present results of a formative survey of 66 genetics clinicians to assess the consent rubric for nine genes (MLH1, CDH1, TP53, GJB2, OTC; DMD, HTT, and CYP2C9/VKORC1). We also conducted interviews and focus groups with family and patient stakeholders (N = 18), nongenetics specialists (N = 27), and genetics clinicians (N = 32) on both rubrics. RESULTS: Formative evaluation of the CADRe rubrics suggests key factors on which to make decisions about consent and disclosure discussions for a "typical" patient. CONCLUSION: We propose that the CADRe rubrics include the primary issues necessary to guide communication recommendations, and are ready for pilot testing by nongenetics clinicians. Consultation with genetics clinicians can be targeted toward more complex or intensive consent and disclosure counseling. More... »

PAGES

727-735

Identifiers

URI

http://scigraph.springernature.com/pub.10.1038/s41436-018-0093-6

DOI

http://dx.doi.org/10.1038/s41436-018-0093-6

DIMENSIONS

https://app.dimensions.ai/details/publication/pub.1105313611

PUBMED

https://www.ncbi.nlm.nih.gov/pubmed/29976988


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Download the RDF metadata as:  json-ld nt turtle xml License info

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RDF/XML is a standard XML format for linked data.

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