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Published in 2023 at "JAMA Network Open"
DOI: 10.1001/jamanetworkopen.2023.10367
Abstract: Key Points Question What are the demographic characteristics of individuals participating in research on the personal utility of genetic and genomic testing? Findings In this systematic review of 52 studies with 13 251 eligible participants, sex…
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Keywords:
utility genetic;
genomic testing;
personal utility;
genetic genomic ... See more keywords
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Published in 2019 at "Genetics in Medicine"
DOI: 10.1038/s41436-019-0730-8
Abstract: Purpose Clinical genome or exome sequencing (GS/ES) provides a diagnosis for many individuals with suspected genetic disorders, but also yields negative or uncertain results for the majority. This study examines how parents of a child…
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Keywords:
sequencing results;
exome sequencing;
utility;
genetics ... See more keywords
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Published in 2018 at "Journal of Medical Ethics"
DOI: 10.1136/medethics-2018-104772
Abstract: Many healthy volunteers choose to take part in Alzheimer’s disease (AD) prevention studies because they want to know whether they will develop dementia—and what they can do to reduce their risk—and are therefore interested in…
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Keywords:
alzheimer disease;
biomarker;
research;
personal utility ... See more keywords