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.

项目总结/摘要 这项补充扩大了父母补助金，一个ELSI综合评价家庭一级的效用， 儿科基因组测序（R 00 HG 011491），明确和有意义地考虑人种和种族， 目标2中收集的选择数据的建模和用于填充决策的参数值的选择 目标3中的模型。它还支持培训和指导候选人泰勒蒙哥马利，技能， 从事研究基因组医学对人口健康的影响的职业。的总体目标 拟议的研究是了解是否以及如何偏好，和结果，临床GS为 新生儿和儿科患者因种族和民族而不同。该研究计划有两个具体目标。一是 将根据人种和种族评价儿科基因组测序偏好的异质性，包括 在已发表的离散数据中，检查考虑种族和民族偏好异质性的方法 选择实验和研究是否以及如何根据种族和民族的偏好不同，使用 通过父母补助金中的离散选择实验收集的主要数据。第二，我们将研究 基因组测序的临床结果是否以及如何因种族和民族而异， 在一家大型转诊医院维护的数据库。这项研究将对基因组学领域产生影响。 通过宣传道德执行GS来改善人口健康。此外，女士 蒙哥马利将获得正式的培训和指导，在文献综述方法，定量方法， 卫生经济学和政策，基因组医学，以及手稿写作和口头和海报 演讲技巧完成拟议的培训和研究计划后，蒙哥马利女士将- 定位开始博士课程，追求在基因组学的公共卫生和政策研究的职业生涯。