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首页> 外文期刊>Genetics in medicine >The who, what, and why of research participants' intentions to request a broad range of secondary findings in a diagnostic genomic sequencing study.
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The who, what, and why of research participants' intentions to request a broad range of secondary findings in a diagnostic genomic sequencing study.

机译：研究参与者意图的世卫组织，谁以及为什么在诊断基因组测序研究中要求广泛的次要发现。

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摘要

In a diagnostic exome sequencing study (the North Carolina Clinical Genomic Evaluation by Next-Generation Exome Sequencing project, NCGENES), we investigated adult patients' intentions to request six categories of secondary findings (SFs) with low or no medical actionability and correlates of their intentions. At enrollment, eligible participants (n?=?152) completed measures assessing their sociodemographic, clinical, and literacy-related characteristics. Prior to and during an in-person diagnostic result disclosure visit, they received education about categories of SFs they could request. Immediately after receiving education at the visit, participants completed measures of intention to learn SFs, interest in each category, and anticipated regret for learning and not learning each category. Seventy-eight percent of participants intended to learn at least some SFs. Logistic regressions examined their intention to learn any or all of these findings (versus none) and interest in each of the six individual categories (yes/no). Results revealed little association between intentions and sociodemographic, clinical, or literacy-related factors. Across outcomes, participants who anticipated regret for learning SFs reported weaker intention to learn them (odds ratios (ORs) from 0.47 to 0.71), and participants who anticipated regret for not learning these findings reported stronger intention to learn them (OR 1.61-2.22). Intentions to request SFs with low or no medical actionability may be strongly influenced by participants' desire to avoid regret.
机译：在诊断exome测序研究中（NCGGENES北卡罗来纳州临床基因组评估，NCGENES），我们调查了成年患者的意图，要求六个类别的二次调查结果（SFS），低或没有医疗可行性和其相关性意图。在注册时，符合条件的参与者（N？=？152）完成措施，评估其社会血统，临床和识字性相关的特征。在诊断结果披露之前，他们接受了他们可以要求的SF的类别的教育。接受教育后立即在访问后，参与者完成了学习SFS，对每个类别的利息的意图措施，并预期学习遗憾，而不是学习每个类别。百分之八十八名参与者旨在学习至少一些SFS。 Logistic回归审查了他们打算学习任何或所有这些发现（无）和六个个别类别中的每一类的兴趣（是/否）。结果表明，意图和社会渗目不志，临床或识字性有关的因素很少。在结果中，预计学习SFS的参与者报告越来越弱于学习它们的意图（OTDS比率（或者）从0.47到0.71的比例（或者），而预期遗憾的是未学习这些调查结果的参与者报告说，这些调查结果更强烈地学习它们（或1.61-2.22） 。请求低或没有医疗可行性的SFS的意图可能受到参与者避免后悔的愿望的强烈影响。

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  • 来源
    《Genetics in medicine》 |2018年第7期|共10页
  • 作者

    Christine Rini; Cynthia M Khan; Elizabeth Moore; Myra I Roche; James P Evans; Jonathan S Berg; Bradford C Powell; Giselle Corbie-Smith; Ann Katherine M Foreman; Ida Griesemer; Kristy Lee; Julianne M ODaniel; Gail E Henderson;

  • 作者单位

    John Theuer Cancer Center Hackensack University Medical Center Hackensack New Jersey USA;

    Econometrica Inc. Bethesda Maryland USA;

    Blue Cross and Blue Shield of North Carolina Durham North Carolina USA;

    Center for Genomics and Society University of North Carolina Chapel Hill North Carolina USA;

    Center for Genomics and Society University of North Carolina Chapel Hill North Carolina USA;

    Center for Genomics and Society University of North Carolina Chapel Hill North Carolina USA;

    Department of Genetics University of North Carolina at Chapel Hill Chapel Hill North Carolina;

    Department of Medicine University of North Carolina at Chapel Hill Chapel Hill North Carolina;

    Center for Genomics and Society University of North Carolina Chapel Hill North Carolina USA;

    Department of Health Behavior University of North Carolina at Chapel Hill Chapel Hill North;

    Department of Genetics University of North Carolina at Chapel Hill Chapel Hill North Carolina;

    Center for Genomics and Society University of North Carolina Chapel Hill North Carolina USA;

    Center for Genomics and Society University of North Carolina Chapel Hill North Carolina USA;

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  • 正文语种 eng
  • 中图分类 医学遗传学;
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