Heterogeneity of preferences for and outcomes of pediatric genomic sequencing by race and ethnicity

按种族和民族划分的儿科基因组测序偏好和结果的异质性

• 批准号: 10841234
• 负责人: Hadley Stevens Smith
• 金额: $ 6.35万
• 依托单位: HARVARD PILGRIM HEALTH CARE, INC.
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-03-13 至 2026-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10841234
• 关键词: Affect; Attention; Boston; Characteristics; Childhood; Clinical; Clinical Data; Consultations; Data; Decision Modeling; Diagnosis; Diagnostic; Doctor of Philosophy; Empirical Research; Equity; Ethics; Ethnic Origin; Evaluation; Family; Genetic; Genetic Diseases; Genomic medicine; Genomics; Goals; Health Policy; Healthcare Systems; Heterogeneity; Hospital Referrals; Institutional Policy; Literature; Manuscripts; Mentorship; Methodology; Methods; Minority Groups; Modeling; Neonatal Intensive Care Units; Newborn Infant; Oral; Outcome; Patients; Pattern; Pediatric Hospitals; Personal Satisfaction; Policy Research; Population; Population Heterogeneity; Positioning Attribute; Public Health; Public Policy; Publishing; Qualitative Research; Quality of life; Race; Research; Research Personnel; Review Literature; Science; Sorting; Structure; Surveys; Time; Training; Training Support; Update; Writing; administrative database; career; clinical care; clinical database; ethical, legal, and social implication; experience; experimental study; genetic testing; health care availability; health economics; improved; marginalized population; parent grant; pediatric patients; population based; population health; posters; preference; programs; skills; sociodemographics; systematic review

Project Summary/Abstract This supplement extends the parent grant, An ELSI-Integrated Evaluation of the Family-Level Utility of Pediatric Genomic Sequencing (R00HG011491), to explicitly and meaningfully consider race and ethnicity in the modeling of choice data collected in Aim 2 and selection of parameter values to populate the decision model in Aim 3. It also supports training and mentorship of the candidate, Taylor Montgomery, with skills to pursue a career researching the impact of genomic medicine on population health. The overall goal of the proposed research is to understand whether and how preferences for, and outcomes of, clinical GS for newborn and pediatric patients differ by race and ethnicity. The research plan has two specific aims. First, we will evaluate heterogeneity of preferences for pediatric genomic sequencing by race and ethnicity, including examining methods for consideration of preference heterogeneity by race and ethnicity in published discrete choice experiments and examining whether and how preferences differ according to race and ethnicity using primary data collected through the discrete choice experiment in the parent grant. Second, we will examine whether and how clinical outcomes of genomic sequencing differ by race and ethnicity using a clinical database maintained at a large referral hospital. This research will have impact on the field of genomic medicine through informing ethical implementation of GS to improve population health. Additionally, Ms. Montgomery will obtain formal training and mentorship in literature review methods, quantitative methods in health economics and policy, and genomic medicine, as well as manuscript writing and oral and poster presentation skills. Upon completion of the proposed training and research plans, Ms. Montgomery will be well- positioned to begin a PhD program to pursue a career in public health and policy research in genomics.

项目摘要/摘要 这种补充剂扩展了父母的赠款，对家庭级别的效用的评估 小儿基因组测序（R00HG011491），明确而有意义地考虑种族和种族 在AIM 2中收集的选择数据的建模和选择参数值以填充决策 AIM 3中的模型。它还支持候选人泰勒·蒙哥马利（Taylor Montgomery）的培训和指导，具体技能 从事研究基因组医学对人群健康的影响的职业。总体目标 拟议的研究是了解临床GS的偏好以及如何和结果 新生儿和儿科患者因种族和种族而异。研究计划有两个具体的目标。首先，我们 将评估种族和种族的小儿基因组测序偏好的异质性，包括 检查方法以考虑偏爱异质性，种族和种族已发表的离散 选择实验并检查偏好是否以及如何根据种族和种族差异 通过父母赠款中的离散选择实验收集的主要数据。第二，我们将检查 基因组测序的临床结果是否因种族和种族而有何不同 数据库在一家大型转诊医院维护。这项研究将对基因组领域产生影响 通过告知GS道德实施以改善人口健康的医学。另外，女士 蒙哥马利将获得文献审查方法的正式培训和指导，定量方法 卫生经济学和政策以及基因组医学以及手稿写作以及口头和海报 演讲技巧。拟议的培训和研究计划完成后，蒙哥马利女士将是很好的 有权开始一项博士学位计划，从事基因组学公共卫生和政策研究职业。