Unmet Needs: Achieving Equity and Support for Parents Pursuing Prenatal Diagnosis in the Genomic Era
未满足的需求:在基因组时代为追求产前诊断的父母实现公平和支持
基本信息
- 批准号:10593733
- 负责人:
- 金额:$ 15.55万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 财政年份:2021
- 资助国家:美国
- 起止时间:2021-08-12 至 2026-06-30
- 项目状态:未结题
- 来源:
- 关键词:AddressAdministrative SupplementAffectAneuploidyAnxietyAreaAutomobile DrivingAwardBioethics ConsultantsBlack PopulationsBlack raceBrainCandidate Disease GeneCaringCohort StudiesCommunitiesCommunity HealthcareConsentCounselingCultural BackgroundsDataDevelopmentDiagnosisDiagnosticDiagnostic testsDissectionEnrollmentFamilyFosteringFutureGenerationsGeneticGenetic MedicineGenetic ServicesGenomic medicineGenomicsGoalsHealth Services AccessibilityHealthcare SystemsIndividualInformed ConsentInstitutionInterventionInterviewInvestigationJusticeKnowledgeMaternal HealthMaternal-fetal medicineMental DepressionMethodsMinority GroupsMissionModelingMothersNational Institute of Child Health and Human DevelopmentNeonatalNonmaleficenceOutcomeParentsPatientsPatternPerinatal mortality demographicsPersonsPopulationPositioning AttributePregnancyPrenatal DiagnosisPsychosocial Assessment and CarePsychosocial InfluencesRaceReligionResearchResearch DesignResearch PersonnelServicesShapesSpecialistStructureSurveysTechnologyTest ResultTestingUnderrepresented MinorityUnderrepresented PopulationsVariantWeightZebrafishbrain abnormalitiesclinical carecohortcongenital anomalydiagnostic algorithmdiagnostic strategydisparity reductionessentialismethnic diversityexomeexome sequencingexperiencefamily supportfetalfetal diagnosisgenetic counselorgenetic discriminationgenetic disorder diagnosisgenetic informationgenetic testinggenome sequencinghealth literacyimprovedinsightneonatal careneonatal deathneonatal outcomenovelnovel diagnosticsoutreachpersonalized diagnosticspostnatalpregnantprenatalprenatal influencepsychologicpsychosocialracismreproductivescreeningsocialtechnology validationultrasounduptake
项目摘要
PROJECT SUMMARY/ABSTRACT
Congenital anomalies affect 3-5% of pregnancies, but account for 30% of neonatal deaths. A significant
proportion of pregnant people in whom a fetal anomaly is identified do not receive indicated prenatal diagnosis,
which is critical to making informed decisions about maternal, fetal, and neonatal care. This pattern is
prominently seen among Black and Latin-X pregnant people, driving delays in diagnosis and worse neonatal
outcomes in these groups. Importantly, there is limited data regarding the factors that influence consent to
genetic diagnosis in these populations, which may include lived experience of race and racism. As exome and
genome sequencing (ES/GS) become poised for implementation into clinical care, understanding reasons for
accepting or declining diagnosis – the first step to sequencing – are critically important to just and equitable
care. Additionally, there is a paucity of data examining the longitudinal impact of ES/GS on maternal health,
such as the weight of genetic data on reproductive decisions, and postnatal anxiety and depression. Examining
this area is critical to informed counseling and non-maleficence as additional technologies become available.
The long-term goal of the parent award is to improve precision in prenatal diagnosis of fetal brain anomalies,
including the identification and characterization of novel candidate genes in brain development. Through
leveraging the parent study cohort and ongoing studies at our institution, the goal of this administrative
supplement is to determine factors that influence informed consent to prenatal diagnosis among Black and
Latin-X people and recognize the impact of ES/GS on mothers beyond seeking a genetic diagnosis. Our
central hypothesis is that better understanding of the above issues will generate patient-perspectives to
implement ES/GS in a way that reduces disparities, fosters reproductive justice, and provides adequate
maternal support. Specifically, we hypothesize that: 1) experiences of racism may drive inequities in informed
consent to genetic diagnosis, and 2) results from ES/GS may require additional counseling beyond the affected
pregnancy. We will test these hypotheses through validated surveys and semi-structured interviews. We
propose the following specific aims: 1) Determine factors that influence genetic testing when a congenital
anomaly is detected on prenatal ultrasound in Black and Latin-X mothers; and 2) Quantify and qualify the
social, psychological, and reproductive impact of ES/GS. Completion of the research proposed in this
administrative supplement will: 1) advance our knowledge of how to provide equity in prenatal genetic care;
and 2) serve as preliminary data for future investigations in counseling and outreach interventions aimed at
reducing disparities in pre- and postnatal genetic care, an understudied area that is of strategic importance to
the mission of the NICHD.
项目总结/文摘
项目成果
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{{ truncateString('Neeta L Vora', 18)}}的其他基金
Genomics and functional dissection of fetal brain abnormalities using a prenatal cohort
使用产前队列对胎儿大脑异常进行基因组学和功能解剖
- 批准号:
10672964 - 财政年份:2021
- 资助金额:
$ 15.55万 - 项目类别:
Genomics and functional dissection of fetal brain abnormalities using a prenatal cohort
使用产前队列对胎儿大脑异常进行基因组学和功能解剖
- 批准号:
10468233 - 财政年份:2021
- 资助金额:
$ 15.55万 - 项目类别:
Genomics and functional dissection of fetal brain abnormalities using a prenatal cohort
使用产前队列对胎儿大脑异常进行基因组学和功能解剖
- 批准号:
10277107 - 财政年份:2021
- 资助金额:
$ 15.55万 - 项目类别:
Determination of Fetal Gene Expression in Women with Preterm & Term Birth
早产妇女胎儿基因表达的测定
- 批准号:
8909154 - 财政年份:2014
- 资助金额:
$ 15.55万 - 项目类别:
Determination of Fetal Gene Expression in Women with Preterm & Term Birth
早产妇女胎儿基因表达的测定
- 批准号:
8751061 - 财政年份:2014
- 资助金额:
$ 15.55万 - 项目类别:
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