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Factors Influencing Access and Utilization of Genetic Prenatal Care Services Among Women from Underserved Populations

Factors Influencing Access and Utilization of Genetic Prenatal Care Services Among Women from Underserved Populations
影响服务不足人群的妇女获得和利用遗传产前护理服务的因素
批准号:
10622369
负责人:
Megan A. Allyse
金额:
$4.81万
依托单位:
依托单位国家:
美国
项目类别:
财政年份:
2018
资助国家:
美国
项目状态:
已结题
起止时间:
2018-03-05 至 2023-07-30
关键词:
AddressAdvisory CommitteesAffectBackBioethicsBirthBlack PopulationsBlack raceCOVID-19 pandemicCOVID-19 pandemic effectsCaringCellsClinicClinical EthicsCommunitiesCommunity HealthDNADataData AnalysesData CollectionData SetDevelopmentDiagnostic ServicesDiscipline of obstetricsDoctor of PhilosophyEmploymentEnvironmentEthnic OriginEventFamily memberFetal DevelopmentFetal healthFetusFloridaFrontline workerFundingFutureGeneticGenetic DiseasesGenetic RiskGenetic ScreeningGenetic ServicesGenomeGoalsGrantHealthHealth Disparities ResearchHealth Services ResearchHealthcareImprove AccessInfection ControlInstitutionInterventionInterviewK-Series Research Career ProgramsLaboratoriesLatinaLatina PopulationLinkLiteratureLive BirthMaintenanceMaternal HealthMedicaidMedicalMentorshipNational Human Genome Research InstituteNeighborhood Health CenterOutcomePatientsPoliciesPopulationPregnancyPregnant WomenPrenatal carePublic HealthPublishingQualitative MethodsQualitative ResearchReduce health disparitiesResearchResearch EthicsResearch PersonnelResearch Project GrantsResearch TrainingResource-limited settingResourcesSample SizeSamplingScienceSupplementationTarget PopulationsTechnologyTelemedicineTestingTimeTrainingTranslational ResearchTranslationsTransportationUnderserved PopulationUniversitiesVisitWomanWomen&aposs Healthbaseblack womencare deliverycare systemscell free DNAclinical translationcommunity based participatory researchcommunity engagementcommunity partnershipcoronavirus diseasecostdesigndisparity reductionefficacy outcomesethical legal social implicationethnic minority populationexperiencefetalfood securitygenetic informationgenetic testinggenome sequencinghealth care deliveryhealth disparityimplementation interventionimprovedinfant morbidity/mortalitymaternal serumnew technologynext generation sequencingobstetric carepandemic diseaseparent grantpopulation basedpregnantprenatalprenatal experienceprenatal testingrapid techniquerecruitresponsesafety netscreeningscreening programscreening servicesskillssocialsocial engagementsocial health determinantstheoriesunderserved communityuptakeurban settingwillingness

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PROJECT SUMMARY/ABSTRACT Prenatal genetic services have expanded at an extraordinary pace over the past 4 years with the development of fetal genome sequencing using cell-free placental DNA in maternal serum. Some commentators predict that this new technology, which allows for noninvasive determination of an increasingly wide range of maternal-fetal health conditions, will improve prenatal care, especially in lower-resource areas. However, this is called into question by research on lower uptake of existing prenatal screening and diagnostic services among ethnic minority populations, even when structural barriers to access are removed. These disparities have led to differential outcomes among some populations, including higher rates of live births affected by a genetic condition and higher maternal-infant morbidity and mortality. We will conduct community based participatory qualitative research with women of Black and Latina ethnicity to assess their understanding of and desire to accept prenatal genetic services. Through our community partners, we will feed the results of our research back into the communities in question in order to facilitate fruitful discussions of future interventions to increase access in ethnic minority populations. Candidate: I hold a PhD in Science and Technology Studies and have trained in clinical and research ethics with two NHGRI ELSI CEERS, at Stanford and Duke Universities. My goal is to become an independently funded researcher focusing on community based participatory research at the intersection of women’s health, health disparities and genetics. To that end, my goals for this training period are as follows: 1. Improve skills in ascertaining and communicating genetics and genetic risk in the prenatal period. 2. Improve skills in community engagement and health disparities research 3. Build community partnerships that allow for long-term development and implementation of interventions to improve access to prenatal genetic care. The K award would allow me to seek answers to important questions around barriers to access to prenatal genetic care among underserved communities. It would allow me to pursue training in community engagement, genetics, and health disparities and to forge links with researchers in the field for collaborative dissemination in order to build a robust research portfolio around reducing health disparities among pregnant women from underserved populations. Mentorship and Institutional environment: I have assembled a strong internal and external mentorship and advisory team of experts in the fields of Bioethics and Obstetric Care to guide me and support my research and training. The research will be conducted at Mayo Clinic, a premier research institution with access to extensive genetic, health services, and translational research resources that will enhance my efforts to achieve my ambitious aims.
期刊论文(20)
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科研奖励(0)
会议论文
Decisional regret in women receiving high risk or inconclusive prenatal cell-free DNA screening results.
在接受高风险或不确定的产前无细胞DNA筛查结果的妇女中的决定性遗憾。
DOI: 10.1080/14767058.2018.1519541
发表时间: 2020-04
期刊: JOURNAL OF MATERNAL-FETAL & NEONATAL MEDICINE
影响因子: 1.8
作者: [Gammon, Betsy L., Jaramillo, Carolina, Riggan, Kirsten A., Allyse, Megan]
通讯作者: Allyse, Megan
Cell-Free DNA Screening During Pregnancy-Reply.
怀孕期间的游离 DNA 筛查-回复。
DOI: 10.1001/jama.2018.18660
发表时间: 2019
期刊: JAMA
影响因子: --
作者: [Allyse,Megan, Wick,Myra]
通讯作者: Wick,Myra
DOI: 10.1080/15265161.2021.2013990
发表时间: 2022-03
期刊: AMERICAN JOURNAL OF BIOETHICS
影响因子: 13.4
作者: [Michie, Marsha, Allyse, Megan A.]
通讯作者: Allyse, Megan A.
Family experiences and attitudes about receiving the diagnosis of sex chromosome aneuploidy in a child.
家庭对接受儿童性染色体非整倍体诊断的经历和态度。
DOI: 10.1002/ajmg.c.31781
发表时间: 2020
期刊: American journal of medical genetics. Part C, Seminars in medical genetics
影响因子: --
作者: [Riggan,KirstenA, Close,Sharron, Allyse,MeganA]
通讯作者: Allyse,MeganA
10
    PaSAGE: PAtient Supported Approaches to Gene Editing
    • 批准号:
      10453979
    • 项目类别:
    • 资助金额:
      $76.04万
    • 财政年份:
      2022
    • 负责人:
      Megan A. Allyse
    • 依托单位:
    PaSAGE: PAtient Supported Approaches to Gene Editing
    • 批准号:
      10709501
    • 项目类别:
    • 资助金额:
      $63.73万
    • 财政年份:
      2022
    • 负责人:
      Megan A. Allyse
    • 依托单位:
    Factors Influencing Access and Utilization of Genetic Prenatal Care Services Among Women from Underserved Populations
    • 批准号:
      10415022
    • 项目类别:
    • 资助金额:
      $14.05万
    • 财政年份:
      2018
    • 负责人:
      Megan A. Allyse
    • 依托单位:
    Factors Influencing Access and Utilization of Genetic Prenatal Care Services Among Women from Underserved Populations
    • 批准号:
      10347319
    • 项目类别:
    • 资助金额:
      $10.18万
    • 财政年份:
      2018
    • 负责人:
      Megan A. Allyse
    • 依托单位:
    海外基金