作者
Leila Jamal, Jill O Robinson, Kurt D Christensen, Jennifer Blumenthal-Barby, Melody J Slashinski, Denise Lautenbach Perry, Jason L Vassy, Julia Wycliff, Robert C Green, Amy L McGuire
发表日期
2017/4/3
期刊
AJOB empirical bioethics
卷号
8
期号
2
页码范围
82-88
出版商
Taylor & Francis
简介
Background: Clinical genome and exome sequencing (CGES) is being used in an expanding range of clinical settings. Most approaches to offering patients choices about learning CGES results classify results according to expert definitions of clinical actionability. Little is known about how patients conceptualize different categories of CGES results. Methods: The MedSeq Project is a randomized controlled trial studying the use of whole-genome sequencing (WGS) in primary care and cardiology. We surveyed 202 patient-participants about different kinds of WGS results and conducted qualitative interviews with 49 of these participants. Interview data were analyzed both inductively and deductively using thematic content analysis. Results: Participants demonstrated high levels of study understanding and genetic literacy. A small majority of participants wanted to learn all of their WGS results (n = 123, 61%). Qualitative …
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