Parental preferences toward genomic sequencing for non-medically actionable conditions in children: a discrete-choice experiment View Full Text


Ontology type: schema:ScholarlyArticle      Open Access: True


Article Info

DATE

2018-02

AUTHORS

Megan A Lewis, Alex Stine, Ryan S Paquin, Carol Mansfield, Dallas Wood, Christine Rini, Myra I Roche, Cynthia M Powell, Jonathan S Berg, Donald B Bailey

ABSTRACT

PurposeApplication of whole-exome and whole-genome sequencing is likely to increase in clinical practice, public health contexts, and research. We investigated how parental preference for acquiring information from genome-scale testing is influenced by the characteristics of non-medically actionable genetic disorders in children, as well as whether the preferences differed by gender and between African-American and white respondents.MethodsWe conducted a Web-based discrete-choice experiment with 1,289 parents of young children. Participants completed "choice tasks" based on pairs of profiles describing sequencing results for hypothetical genetic disorders, selected the profile in each pair that they believed represented the information that would be more important to know, and answered questions that measured their level of distress.ResultsKnowing the likelihood that the disorder would develop given a true-positive test result was most important to parents. Parents showed greater interest in learning sequencing results for disease profiles with more severe manifestations. This was associated with greater distress. Differences by gender and race reflected small differences in magnitude, but not direction.ConclusionParents preferred to learn results about genetic disorders with more severe manifestations, even when this knowledge was associated with increased distress. These results may help clinicians support parental decision making by revealing which types of sequencing results parents are interested in learning. More... »

PAGES

181

References to SciGraph publications

Identifiers

URI

http://scigraph.springernature.com/pub.10.1038/gim.2017.93

DOI

http://dx.doi.org/10.1038/gim.2017.93

DIMENSIONS

https://app.dimensions.ai/details/publication/pub.1090954568

PUBMED

https://www.ncbi.nlm.nih.gov/pubmed/28771249


Indexing Status Check whether this publication has been indexed by Scopus and Web Of Science using the SN Indexing Status Tool
Incoming Citations Browse incoming citations for this publication using opencitations.net

JSON-LD is the canonical representation for SciGraph data.

TIP: You can open this SciGraph record using an external JSON-LD service: JSON-LD Playground Google SDTT

[
  {
    "@context": "https://springernature.github.io/scigraph/jsonld/sgcontext.json", 
    "about": [
      {
        "id": "http://purl.org/au-research/vocabulary/anzsrc-for/2008/0604", 
        "inDefinedTermSet": "http://purl.org/au-research/vocabulary/anzsrc-for/2008/", 
        "name": "Genetics", 
        "type": "DefinedTerm"
      }, 
      {
        "id": "http://purl.org/au-research/vocabulary/anzsrc-for/2008/06", 
        "inDefinedTermSet": "http://purl.org/au-research/vocabulary/anzsrc-for/2008/", 
        "name": "Biological Sciences", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Adult", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Age of Onset", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Child", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Choice Behavior", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Decision Making", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Female", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Genetic Diseases, Inborn", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Genetic Testing", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Health Knowledge, Attitudes, Practice", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Humans", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Male", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Parents", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Phenotype", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Surveys and Questionnaires", 
        "type": "DefinedTerm"
      }, 
      {
        "inDefinedTermSet": "https://www.nlm.nih.gov/mesh/", 
        "name": "Whole Genome Sequencing", 
        "type": "DefinedTerm"
      }
    ], 
    "author": [
      {
        "affiliation": {
          "alternateName": "RTI International", 
          "id": "https://www.grid.ac/institutes/grid.62562.35", 
          "name": [
            "RTI International, Research Triangle Park, Durham, North Carolina, USA"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Lewis", 
        "givenName": "Megan A", 
        "id": "sg:person.01274641213.01", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01274641213.01"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "RTI International", 
          "id": "https://www.grid.ac/institutes/grid.62562.35", 
          "name": [
            "RTI International, Research Triangle Park, Durham, North Carolina, USA"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Stine", 
        "givenName": "Alex", 
        "id": "sg:person.012202552247.62", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.012202552247.62"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "RTI International", 
          "id": "https://www.grid.ac/institutes/grid.62562.35", 
          "name": [
            "RTI International, Research Triangle Park, Durham, North Carolina, USA"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Paquin", 
        "givenName": "Ryan S", 
        "id": "sg:person.01152313525.55", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01152313525.55"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "RTI International", 
          "id": "https://www.grid.ac/institutes/grid.62562.35", 
          "name": [
            "RTI International, Research Triangle Park, Durham, North Carolina, USA"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Mansfield", 
        "givenName": "Carol", 
        "id": "sg:person.011705723124.99", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.011705723124.99"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "RTI International", 
          "id": "https://www.grid.ac/institutes/grid.62562.35", 
          "name": [
            "RTI International, Research Triangle Park, Durham, North Carolina, USA"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Wood", 
        "givenName": "Dallas", 
        "id": "sg:person.07705227013.99", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.07705227013.99"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of North Carolina at Chapel Hill", 
          "id": "https://www.grid.ac/institutes/grid.10698.36", 
          "name": [
            "Department of Health Behavior and Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Rini", 
        "givenName": "Christine", 
        "id": "sg:person.014036257067.69", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.014036257067.69"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of North Carolina at Chapel Hill", 
          "id": "https://www.grid.ac/institutes/grid.10698.36", 
          "name": [
            "Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA", 
            "Department of Genetics, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Roche", 
        "givenName": "Myra I", 
        "id": "sg:person.01271031056.31", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01271031056.31"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of North Carolina at Chapel Hill", 
          "id": "https://www.grid.ac/institutes/grid.10698.36", 
          "name": [
            "Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA", 
            "Department of Genetics, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Powell", 
        "givenName": "Cynthia M", 
        "id": "sg:person.01135567333.09", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01135567333.09"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "University of North Carolina at Chapel Hill", 
          "id": "https://www.grid.ac/institutes/grid.10698.36", 
          "name": [
            "Department of Genetics, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Berg", 
        "givenName": "Jonathan S", 
        "id": "sg:person.0763553514.40", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.0763553514.40"
        ], 
        "type": "Person"
      }, 
      {
        "affiliation": {
          "alternateName": "RTI International", 
          "id": "https://www.grid.ac/institutes/grid.62562.35", 
          "name": [
            "RTI International, Research Triangle Park, Durham, North Carolina, USA"
          ], 
          "type": "Organization"
        }, 
        "familyName": "Bailey", 
        "givenName": "Donald B", 
        "id": "sg:person.07477115377.43", 
        "sameAs": [
          "https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.07477115377.43"
        ], 
        "type": "Person"
      }
    ], 
    "citation": [
      {
        "id": "sg:pub.10.1007/bf00999210", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1000866739", 
          "https://doi.org/10.1007/bf00999210"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1542/peds.2015-3731c", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1005288532"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/gim.2015.104", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1005398914", 
          "https://doi.org/10.1038/gim.2015.104"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1002/bdm.1751", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1013349204"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/gim.2011.25", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1013967072", 
          "https://doi.org/10.1038/gim.2011.25"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1007/s40273-014-0170-x", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1014604000", 
          "https://doi.org/10.1007/s40273-014-0170-x"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1542/peds.2015-3731e", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1015579118"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1093/jpepsy/jsn032", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1020339943"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.5993/ajhb.27.1.s3.6", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1022862294"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1093/jamia/ocv214", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1025103052"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/gim.2013.76", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1025246724", 
          "https://doi.org/10.1038/gim.2013.76"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1093/jnci/djr318", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1025967266"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1016/j.jval.2010.11.013", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1030781921"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1159/000375115", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1031459933"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1016/j.jval.2012.08.2223", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1037115565"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1177/1077558700057001s07", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1038772977"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1177/1077558700057001s07", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1038772977"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.2165/11539650-000000000-00000", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1039139143", 
          "https://doi.org/10.2165/11539650-000000000-00000"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.2165/11539650-000000000-00000", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1039139143", 
          "https://doi.org/10.2165/11539650-000000000-00000"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1080/03610910802244638", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1039433722"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1108/10662240510590360", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1039587060"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1542/peds.2015-3731g", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1041415985"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1159/000358539", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1045211093"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1002/ajmg.a.35554", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1045817053"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/ejhg.2014.289", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1045862946", 
          "https://doi.org/10.1038/ejhg.2014.289"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1001/archinte.162.21.2458", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1046588477"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1503/cmaj.140697", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1049491131"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1503/cmaj.140697", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1049491131"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/gim.2013.63", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1050654944", 
          "https://doi.org/10.1038/gim.2013.63"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1007/s11606-008-0575-3", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1050659411", 
          "https://doi.org/10.1007/s11606-008-0575-3"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1007/978-1-4020-5753-3_3", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1051568584", 
          "https://doi.org/10.1007/978-1-4020-5753-3_3"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "sg:pub.10.1038/gim.2014.139", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1053106157", 
          "https://doi.org/10.1038/gim.2014.139"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1177/1077558700057001s10", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1053353054"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1177/1077558700057001s10", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1053353054"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1016/j.janxdis.2013.07.008", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1053461541"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.2196/jmir.4.2.e13", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1069286249"
        ], 
        "type": "CreativeWork"
      }, 
      {
        "id": "https://doi.org/10.1017/cbo9780511753831", 
        "sameAs": [
          "https://app.dimensions.ai/details/publication/pub.1098665042"
        ], 
        "type": "CreativeWork"
      }
    ], 
    "datePublished": "2018-02", 
    "datePublishedReg": "2018-02-01", 
    "description": "PurposeApplication of whole-exome and whole-genome sequencing is likely to increase in clinical practice, public health contexts, and research. We investigated how parental preference for acquiring information from genome-scale testing is influenced by the characteristics of non-medically actionable genetic disorders in children, as well as whether the preferences differed by gender and between African-American and white respondents.MethodsWe conducted a Web-based discrete-choice experiment with 1,289 parents of young children. Participants completed \"choice tasks\" based on pairs of profiles describing sequencing results for hypothetical genetic disorders, selected the profile in each pair that they believed represented the information that would be more important to know, and answered questions that measured their level of distress.ResultsKnowing the likelihood that the disorder would develop given a true-positive test result was most important to parents. Parents showed greater interest in learning sequencing results for disease profiles with more severe manifestations. This was associated with greater distress. Differences by gender and race reflected small differences in magnitude, but not direction.ConclusionParents preferred to learn results about genetic disorders with more severe manifestations, even when this knowledge was associated with increased distress. These results may help clinicians support parental decision making by revealing which types of sequencing results parents are interested in learning.", 
    "genre": "research_article", 
    "id": "sg:pub.10.1038/gim.2017.93", 
    "inLanguage": [
      "en"
    ], 
    "isAccessibleForFree": true, 
    "isFundedItemOf": [
      {
        "id": "sg:grant.2696069", 
        "type": "MonetaryGrant"
      }
    ], 
    "isPartOf": [
      {
        "id": "sg:journal.1119411", 
        "issn": [
          "1098-3600", 
          "1530-0366"
        ], 
        "name": "Genetics in Medicine", 
        "type": "Periodical"
      }, 
      {
        "issueNumber": "2", 
        "type": "PublicationIssue"
      }, 
      {
        "type": "PublicationVolume", 
        "volumeNumber": "20"
      }
    ], 
    "name": "Parental preferences toward genomic sequencing for non-medically actionable conditions in children: a discrete-choice experiment", 
    "pagination": "181", 
    "productId": [
      {
        "name": "readcube_id", 
        "type": "PropertyValue", 
        "value": [
          "85918986d111f467928ea6c1c4685a881e8adbd66fe562add64a9b3abde9df2b"
        ]
      }, 
      {
        "name": "pubmed_id", 
        "type": "PropertyValue", 
        "value": [
          "28771249"
        ]
      }, 
      {
        "name": "nlm_unique_id", 
        "type": "PropertyValue", 
        "value": [
          "9815831"
        ]
      }, 
      {
        "name": "doi", 
        "type": "PropertyValue", 
        "value": [
          "10.1038/gim.2017.93"
        ]
      }, 
      {
        "name": "dimensions_id", 
        "type": "PropertyValue", 
        "value": [
          "pub.1090954568"
        ]
      }
    ], 
    "sameAs": [
      "https://doi.org/10.1038/gim.2017.93", 
      "https://app.dimensions.ai/details/publication/pub.1090954568"
    ], 
    "sdDataset": "articles", 
    "sdDatePublished": "2019-04-10T21:42", 
    "sdLicense": "https://scigraph.springernature.com/explorer/license/", 
    "sdPublisher": {
      "name": "Springer Nature - SN SciGraph project", 
      "type": "Organization"
    }, 
    "sdSource": "s3://com-uberresearch-data-dimensions-target-20181106-alternative/cleanup/v134/2549eaecd7973599484d7c17b260dba0a4ecb94b/merge/v9/a6c9fde33151104705d4d7ff012ea9563521a3ce/jats-lookup/v90/0000000001_0000000264/records_8687_00000540.jsonl", 
    "type": "ScholarlyArticle", 
    "url": "https://www.nature.com/articles/gim201793"
  }
]
 

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

HOW TO GET THIS DATA PROGRAMMATICALLY:

JSON-LD is a popular format for linked data which is fully compatible with JSON.

curl -H 'Accept: application/ld+json' 'https://scigraph.springernature.com/pub.10.1038/gim.2017.93'

N-Triples is a line-based linked data format ideal for batch operations.

curl -H 'Accept: application/n-triples' 'https://scigraph.springernature.com/pub.10.1038/gim.2017.93'

Turtle is a human-readable linked data format.

curl -H 'Accept: text/turtle' 'https://scigraph.springernature.com/pub.10.1038/gim.2017.93'

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

curl -H 'Accept: application/rdf+xml' 'https://scigraph.springernature.com/pub.10.1038/gim.2017.93'


 

This table displays all metadata directly associated to this object as RDF triples.

309 TRIPLES      21 PREDICATES      77 URIs      36 LITERALS      24 BLANK NODES

Subject Predicate Object
1 sg:pub.10.1038/gim.2017.93 schema:about N23cf02b6cfa544c8932962ff172de1b6
2 N2457df37235a43a1abf49f4f1f4ab2d6
3 N3080eadfce6348f29de2d9837265a7bf
4 N37af76f05a2f46c38e5fb9d135a20d77
5 N84b3d285b18c4311902a0387cf009ef2
6 N85360bd6fdc0474ba08eb8d54135f782
7 Nadc4911011c9498994edc68b3bbd7f19
8 Nc6d85bf146054d499fdd6372ad7a1b38
9 Nc927fcfe6e8e4eadb2c596bf0917b70a
10 Ncdc88001984d4983b98c9ace0bb2ab6d
11 Ne9ee7852173a4bb4ae0b01414ff14f58
12 Neeea469c70c44778b72d4a5230684874
13 Nf4c03c7770c5476aa90f46054a64e82d
14 Nf77eb4de7682458aa9cc7786a67b8603
15 Nff8f5089be254afaba0dff1d51dc4acd
16 anzsrc-for:06
17 anzsrc-for:0604
18 schema:author Ne7ece78b16d44bc8bda0002615d01d0b
19 schema:citation sg:pub.10.1007/978-1-4020-5753-3_3
20 sg:pub.10.1007/bf00999210
21 sg:pub.10.1007/s11606-008-0575-3
22 sg:pub.10.1007/s40273-014-0170-x
23 sg:pub.10.1038/ejhg.2014.289
24 sg:pub.10.1038/gim.2011.25
25 sg:pub.10.1038/gim.2013.63
26 sg:pub.10.1038/gim.2013.76
27 sg:pub.10.1038/gim.2014.139
28 sg:pub.10.1038/gim.2015.104
29 sg:pub.10.2165/11539650-000000000-00000
30 https://doi.org/10.1001/archinte.162.21.2458
31 https://doi.org/10.1002/ajmg.a.35554
32 https://doi.org/10.1002/bdm.1751
33 https://doi.org/10.1016/j.janxdis.2013.07.008
34 https://doi.org/10.1016/j.jval.2010.11.013
35 https://doi.org/10.1016/j.jval.2012.08.2223
36 https://doi.org/10.1017/cbo9780511753831
37 https://doi.org/10.1080/03610910802244638
38 https://doi.org/10.1093/jamia/ocv214
39 https://doi.org/10.1093/jnci/djr318
40 https://doi.org/10.1093/jpepsy/jsn032
41 https://doi.org/10.1108/10662240510590360
42 https://doi.org/10.1159/000358539
43 https://doi.org/10.1159/000375115
44 https://doi.org/10.1177/1077558700057001s07
45 https://doi.org/10.1177/1077558700057001s10
46 https://doi.org/10.1503/cmaj.140697
47 https://doi.org/10.1542/peds.2015-3731c
48 https://doi.org/10.1542/peds.2015-3731e
49 https://doi.org/10.1542/peds.2015-3731g
50 https://doi.org/10.2196/jmir.4.2.e13
51 https://doi.org/10.5993/ajhb.27.1.s3.6
52 schema:datePublished 2018-02
53 schema:datePublishedReg 2018-02-01
54 schema:description PurposeApplication of whole-exome and whole-genome sequencing is likely to increase in clinical practice, public health contexts, and research. We investigated how parental preference for acquiring information from genome-scale testing is influenced by the characteristics of non-medically actionable genetic disorders in children, as well as whether the preferences differed by gender and between African-American and white respondents.MethodsWe conducted a Web-based discrete-choice experiment with 1,289 parents of young children. Participants completed "choice tasks" based on pairs of profiles describing sequencing results for hypothetical genetic disorders, selected the profile in each pair that they believed represented the information that would be more important to know, and answered questions that measured their level of distress.ResultsKnowing the likelihood that the disorder would develop given a true-positive test result was most important to parents. Parents showed greater interest in learning sequencing results for disease profiles with more severe manifestations. This was associated with greater distress. Differences by gender and race reflected small differences in magnitude, but not direction.ConclusionParents preferred to learn results about genetic disorders with more severe manifestations, even when this knowledge was associated with increased distress. These results may help clinicians support parental decision making by revealing which types of sequencing results parents are interested in learning.
55 schema:genre research_article
56 schema:inLanguage en
57 schema:isAccessibleForFree true
58 schema:isPartOf N55811570356f429bb5f52b383cebf058
59 Neeb14fb3c216475abcd7a3390601010c
60 sg:journal.1119411
61 schema:name Parental preferences toward genomic sequencing for non-medically actionable conditions in children: a discrete-choice experiment
62 schema:pagination 181
63 schema:productId N2451dd7f2a50412bad4196a3a7e1254d
64 N3ed109d1d30d4d1185b36c3b18e5d4b5
65 N4d473d9d5e484427a528e0a5bb83e3d7
66 N8d8fc1690fb14faf8fb1f283f69c6148
67 N9faaacc8531e467f885a4f6c4b415b18
68 schema:sameAs https://app.dimensions.ai/details/publication/pub.1090954568
69 https://doi.org/10.1038/gim.2017.93
70 schema:sdDatePublished 2019-04-10T21:42
71 schema:sdLicense https://scigraph.springernature.com/explorer/license/
72 schema:sdPublisher Nb89ab759c6294d988dbaa82377dc8ace
73 schema:url https://www.nature.com/articles/gim201793
74 sgo:license sg:explorer/license/
75 sgo:sdDataset articles
76 rdf:type schema:ScholarlyArticle
77 N23cf02b6cfa544c8932962ff172de1b6 schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
78 schema:name Health Knowledge, Attitudes, Practice
79 rdf:type schema:DefinedTerm
80 N2451dd7f2a50412bad4196a3a7e1254d schema:name dimensions_id
81 schema:value pub.1090954568
82 rdf:type schema:PropertyValue
83 N2457df37235a43a1abf49f4f1f4ab2d6 schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
84 schema:name Child
85 rdf:type schema:DefinedTerm
86 N24a2b7f82deb4335adfc5786db3abf60 rdf:first sg:person.07477115377.43
87 rdf:rest rdf:nil
88 N3080eadfce6348f29de2d9837265a7bf schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
89 schema:name Genetic Testing
90 rdf:type schema:DefinedTerm
91 N367dfb6ed0d44a839949be2a2e62527c rdf:first sg:person.014036257067.69
92 rdf:rest Ndb5216ca58d74670b2f85e5737ef031c
93 N37af76f05a2f46c38e5fb9d135a20d77 schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
94 schema:name Male
95 rdf:type schema:DefinedTerm
96 N3ed109d1d30d4d1185b36c3b18e5d4b5 schema:name readcube_id
97 schema:value 85918986d111f467928ea6c1c4685a881e8adbd66fe562add64a9b3abde9df2b
98 rdf:type schema:PropertyValue
99 N4914ae1eca6c4b4fb41e0b98414172ef rdf:first sg:person.01152313525.55
100 rdf:rest Naf57ff8196874398a2f4534bf4cb1bf0
101 N4d473d9d5e484427a528e0a5bb83e3d7 schema:name nlm_unique_id
102 schema:value 9815831
103 rdf:type schema:PropertyValue
104 N55811570356f429bb5f52b383cebf058 schema:issueNumber 2
105 rdf:type schema:PublicationIssue
106 N55cf260dc70b46e691437e7fc5f3efa5 rdf:first sg:person.012202552247.62
107 rdf:rest N4914ae1eca6c4b4fb41e0b98414172ef
108 N84b3d285b18c4311902a0387cf009ef2 schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
109 schema:name Age of Onset
110 rdf:type schema:DefinedTerm
111 N85360bd6fdc0474ba08eb8d54135f782 schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
112 schema:name Genetic Diseases, Inborn
113 rdf:type schema:DefinedTerm
114 N8d8fc1690fb14faf8fb1f283f69c6148 schema:name doi
115 schema:value 10.1038/gim.2017.93
116 rdf:type schema:PropertyValue
117 N9f94aafa706b46b19f81f66e961df452 rdf:first sg:person.07705227013.99
118 rdf:rest N367dfb6ed0d44a839949be2a2e62527c
119 N9faaacc8531e467f885a4f6c4b415b18 schema:name pubmed_id
120 schema:value 28771249
121 rdf:type schema:PropertyValue
122 Nadc4911011c9498994edc68b3bbd7f19 schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
123 schema:name Parents
124 rdf:type schema:DefinedTerm
125 Naddfd8c765fe4ec58c7c22420fbb87be rdf:first sg:person.0763553514.40
126 rdf:rest N24a2b7f82deb4335adfc5786db3abf60
127 Naf57ff8196874398a2f4534bf4cb1bf0 rdf:first sg:person.011705723124.99
128 rdf:rest N9f94aafa706b46b19f81f66e961df452
129 Nb89ab759c6294d988dbaa82377dc8ace schema:name Springer Nature - SN SciGraph project
130 rdf:type schema:Organization
131 Nc6d85bf146054d499fdd6372ad7a1b38 schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
132 schema:name Female
133 rdf:type schema:DefinedTerm
134 Nc927fcfe6e8e4eadb2c596bf0917b70a schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
135 schema:name Humans
136 rdf:type schema:DefinedTerm
137 Ncdc88001984d4983b98c9ace0bb2ab6d schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
138 schema:name Surveys and Questionnaires
139 rdf:type schema:DefinedTerm
140 Ndb5216ca58d74670b2f85e5737ef031c rdf:first sg:person.01271031056.31
141 rdf:rest Ne11086e617774295a92ac0a2cd1b9f0e
142 Ne11086e617774295a92ac0a2cd1b9f0e rdf:first sg:person.01135567333.09
143 rdf:rest Naddfd8c765fe4ec58c7c22420fbb87be
144 Ne7ece78b16d44bc8bda0002615d01d0b rdf:first sg:person.01274641213.01
145 rdf:rest N55cf260dc70b46e691437e7fc5f3efa5
146 Ne9ee7852173a4bb4ae0b01414ff14f58 schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
147 schema:name Adult
148 rdf:type schema:DefinedTerm
149 Neeb14fb3c216475abcd7a3390601010c schema:volumeNumber 20
150 rdf:type schema:PublicationVolume
151 Neeea469c70c44778b72d4a5230684874 schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
152 schema:name Decision Making
153 rdf:type schema:DefinedTerm
154 Nf4c03c7770c5476aa90f46054a64e82d schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
155 schema:name Choice Behavior
156 rdf:type schema:DefinedTerm
157 Nf77eb4de7682458aa9cc7786a67b8603 schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
158 schema:name Phenotype
159 rdf:type schema:DefinedTerm
160 Nff8f5089be254afaba0dff1d51dc4acd schema:inDefinedTermSet https://www.nlm.nih.gov/mesh/
161 schema:name Whole Genome Sequencing
162 rdf:type schema:DefinedTerm
163 anzsrc-for:06 schema:inDefinedTermSet anzsrc-for:
164 schema:name Biological Sciences
165 rdf:type schema:DefinedTerm
166 anzsrc-for:0604 schema:inDefinedTermSet anzsrc-for:
167 schema:name Genetics
168 rdf:type schema:DefinedTerm
169 sg:grant.2696069 http://pending.schema.org/fundedItem sg:pub.10.1038/gim.2017.93
170 rdf:type schema:MonetaryGrant
171 sg:journal.1119411 schema:issn 1098-3600
172 1530-0366
173 schema:name Genetics in Medicine
174 rdf:type schema:Periodical
175 sg:person.01135567333.09 schema:affiliation https://www.grid.ac/institutes/grid.10698.36
176 schema:familyName Powell
177 schema:givenName Cynthia M
178 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01135567333.09
179 rdf:type schema:Person
180 sg:person.01152313525.55 schema:affiliation https://www.grid.ac/institutes/grid.62562.35
181 schema:familyName Paquin
182 schema:givenName Ryan S
183 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01152313525.55
184 rdf:type schema:Person
185 sg:person.011705723124.99 schema:affiliation https://www.grid.ac/institutes/grid.62562.35
186 schema:familyName Mansfield
187 schema:givenName Carol
188 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.011705723124.99
189 rdf:type schema:Person
190 sg:person.012202552247.62 schema:affiliation https://www.grid.ac/institutes/grid.62562.35
191 schema:familyName Stine
192 schema:givenName Alex
193 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.012202552247.62
194 rdf:type schema:Person
195 sg:person.01271031056.31 schema:affiliation https://www.grid.ac/institutes/grid.10698.36
196 schema:familyName Roche
197 schema:givenName Myra I
198 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01271031056.31
199 rdf:type schema:Person
200 sg:person.01274641213.01 schema:affiliation https://www.grid.ac/institutes/grid.62562.35
201 schema:familyName Lewis
202 schema:givenName Megan A
203 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01274641213.01
204 rdf:type schema:Person
205 sg:person.014036257067.69 schema:affiliation https://www.grid.ac/institutes/grid.10698.36
206 schema:familyName Rini
207 schema:givenName Christine
208 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.014036257067.69
209 rdf:type schema:Person
210 sg:person.07477115377.43 schema:affiliation https://www.grid.ac/institutes/grid.62562.35
211 schema:familyName Bailey
212 schema:givenName Donald B
213 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.07477115377.43
214 rdf:type schema:Person
215 sg:person.0763553514.40 schema:affiliation https://www.grid.ac/institutes/grid.10698.36
216 schema:familyName Berg
217 schema:givenName Jonathan S
218 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.0763553514.40
219 rdf:type schema:Person
220 sg:person.07705227013.99 schema:affiliation https://www.grid.ac/institutes/grid.62562.35
221 schema:familyName Wood
222 schema:givenName Dallas
223 schema:sameAs https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.07705227013.99
224 rdf:type schema:Person
225 sg:pub.10.1007/978-1-4020-5753-3_3 schema:sameAs https://app.dimensions.ai/details/publication/pub.1051568584
226 https://doi.org/10.1007/978-1-4020-5753-3_3
227 rdf:type schema:CreativeWork
228 sg:pub.10.1007/bf00999210 schema:sameAs https://app.dimensions.ai/details/publication/pub.1000866739
229 https://doi.org/10.1007/bf00999210
230 rdf:type schema:CreativeWork
231 sg:pub.10.1007/s11606-008-0575-3 schema:sameAs https://app.dimensions.ai/details/publication/pub.1050659411
232 https://doi.org/10.1007/s11606-008-0575-3
233 rdf:type schema:CreativeWork
234 sg:pub.10.1007/s40273-014-0170-x schema:sameAs https://app.dimensions.ai/details/publication/pub.1014604000
235 https://doi.org/10.1007/s40273-014-0170-x
236 rdf:type schema:CreativeWork
237 sg:pub.10.1038/ejhg.2014.289 schema:sameAs https://app.dimensions.ai/details/publication/pub.1045862946
238 https://doi.org/10.1038/ejhg.2014.289
239 rdf:type schema:CreativeWork
240 sg:pub.10.1038/gim.2011.25 schema:sameAs https://app.dimensions.ai/details/publication/pub.1013967072
241 https://doi.org/10.1038/gim.2011.25
242 rdf:type schema:CreativeWork
243 sg:pub.10.1038/gim.2013.63 schema:sameAs https://app.dimensions.ai/details/publication/pub.1050654944
244 https://doi.org/10.1038/gim.2013.63
245 rdf:type schema:CreativeWork
246 sg:pub.10.1038/gim.2013.76 schema:sameAs https://app.dimensions.ai/details/publication/pub.1025246724
247 https://doi.org/10.1038/gim.2013.76
248 rdf:type schema:CreativeWork
249 sg:pub.10.1038/gim.2014.139 schema:sameAs https://app.dimensions.ai/details/publication/pub.1053106157
250 https://doi.org/10.1038/gim.2014.139
251 rdf:type schema:CreativeWork
252 sg:pub.10.1038/gim.2015.104 schema:sameAs https://app.dimensions.ai/details/publication/pub.1005398914
253 https://doi.org/10.1038/gim.2015.104
254 rdf:type schema:CreativeWork
255 sg:pub.10.2165/11539650-000000000-00000 schema:sameAs https://app.dimensions.ai/details/publication/pub.1039139143
256 https://doi.org/10.2165/11539650-000000000-00000
257 rdf:type schema:CreativeWork
258 https://doi.org/10.1001/archinte.162.21.2458 schema:sameAs https://app.dimensions.ai/details/publication/pub.1046588477
259 rdf:type schema:CreativeWork
260 https://doi.org/10.1002/ajmg.a.35554 schema:sameAs https://app.dimensions.ai/details/publication/pub.1045817053
261 rdf:type schema:CreativeWork
262 https://doi.org/10.1002/bdm.1751 schema:sameAs https://app.dimensions.ai/details/publication/pub.1013349204
263 rdf:type schema:CreativeWork
264 https://doi.org/10.1016/j.janxdis.2013.07.008 schema:sameAs https://app.dimensions.ai/details/publication/pub.1053461541
265 rdf:type schema:CreativeWork
266 https://doi.org/10.1016/j.jval.2010.11.013 schema:sameAs https://app.dimensions.ai/details/publication/pub.1030781921
267 rdf:type schema:CreativeWork
268 https://doi.org/10.1016/j.jval.2012.08.2223 schema:sameAs https://app.dimensions.ai/details/publication/pub.1037115565
269 rdf:type schema:CreativeWork
270 https://doi.org/10.1017/cbo9780511753831 schema:sameAs https://app.dimensions.ai/details/publication/pub.1098665042
271 rdf:type schema:CreativeWork
272 https://doi.org/10.1080/03610910802244638 schema:sameAs https://app.dimensions.ai/details/publication/pub.1039433722
273 rdf:type schema:CreativeWork
274 https://doi.org/10.1093/jamia/ocv214 schema:sameAs https://app.dimensions.ai/details/publication/pub.1025103052
275 rdf:type schema:CreativeWork
276 https://doi.org/10.1093/jnci/djr318 schema:sameAs https://app.dimensions.ai/details/publication/pub.1025967266
277 rdf:type schema:CreativeWork
278 https://doi.org/10.1093/jpepsy/jsn032 schema:sameAs https://app.dimensions.ai/details/publication/pub.1020339943
279 rdf:type schema:CreativeWork
280 https://doi.org/10.1108/10662240510590360 schema:sameAs https://app.dimensions.ai/details/publication/pub.1039587060
281 rdf:type schema:CreativeWork
282 https://doi.org/10.1159/000358539 schema:sameAs https://app.dimensions.ai/details/publication/pub.1045211093
283 rdf:type schema:CreativeWork
284 https://doi.org/10.1159/000375115 schema:sameAs https://app.dimensions.ai/details/publication/pub.1031459933
285 rdf:type schema:CreativeWork
286 https://doi.org/10.1177/1077558700057001s07 schema:sameAs https://app.dimensions.ai/details/publication/pub.1038772977
287 rdf:type schema:CreativeWork
288 https://doi.org/10.1177/1077558700057001s10 schema:sameAs https://app.dimensions.ai/details/publication/pub.1053353054
289 rdf:type schema:CreativeWork
290 https://doi.org/10.1503/cmaj.140697 schema:sameAs https://app.dimensions.ai/details/publication/pub.1049491131
291 rdf:type schema:CreativeWork
292 https://doi.org/10.1542/peds.2015-3731c schema:sameAs https://app.dimensions.ai/details/publication/pub.1005288532
293 rdf:type schema:CreativeWork
294 https://doi.org/10.1542/peds.2015-3731e schema:sameAs https://app.dimensions.ai/details/publication/pub.1015579118
295 rdf:type schema:CreativeWork
296 https://doi.org/10.1542/peds.2015-3731g schema:sameAs https://app.dimensions.ai/details/publication/pub.1041415985
297 rdf:type schema:CreativeWork
298 https://doi.org/10.2196/jmir.4.2.e13 schema:sameAs https://app.dimensions.ai/details/publication/pub.1069286249
299 rdf:type schema:CreativeWork
300 https://doi.org/10.5993/ajhb.27.1.s3.6 schema:sameAs https://app.dimensions.ai/details/publication/pub.1022862294
301 rdf:type schema:CreativeWork
302 https://www.grid.ac/institutes/grid.10698.36 schema:alternateName University of North Carolina at Chapel Hill
303 schema:name Department of Genetics, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA
304 Department of Health Behavior and Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
305 Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA
306 rdf:type schema:Organization
307 https://www.grid.ac/institutes/grid.62562.35 schema:alternateName RTI International
308 schema:name RTI International, Research Triangle Park, Durham, North Carolina, USA
309 rdf:type schema:Organization
 




Preview window. Press ESC to close (or click here)


...