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: 10347319
• 负责人: Megan A. Allyse
• 金额: $ 10.18万
• 依托单位: MAYO CLINIC JACKSONVILLE
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-03-05 至 2023-07-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10347319
• 关键词: Advisory Committees; Affect; African American; African American population; American; American College of Obstetricians and Gynecologists; Amniocentesis; Aneuploidy; Area; Back; Belief; Benefits and Risks; Bioethics; Birth; Caring; Cells; Child; Chorionic Villi Sampling; Clinic; Clinical; Clinical Ethics; Communities; Community Health; DNA; Decision Making; Detection; Development; Diagnosis; Diagnostic Procedure; Diagnostic Services; Diagnostic tests; Doctor of Philosophy; Elements; Eligibility Determination; Empirical Research; Environment; Ethnic Origin; Family; Fetal Development; Fetal health; Fetus; Funding; Future; General Population; Genetic; Genetic Diseases; Genetic Research; Genetic Risk; Genetic Screening; Genetic Services; Goals; Guidelines; Health; Health Disparities Research; Health Personnel; Health Services; Health Services Research; Heart Abnormalities; Improve Access; Institution; Insurance; Insurance Coverage; Intervention; K-Series Research Career Programs; Knowledge; Latina; Latina Population; Lead; Link; Live Birth; Maternal Health; Medical Genetics; Medical Research; Mentorship; Minority Groups; Minority Women; Morbidity - disease rate; National Human Genome Research Institute; Neighborhood Health Center; Neonatal; Outcome; Patients; Perinatal mortality demographics; Population; Pre-Eclampsia; Pregnancy; Pregnancy loss; Pregnant Women; Premature Birth; Prenatal care; Process; Professional Organizations; Qualitative Research; Reduce health disparities; Reporting; Research; Research Design; Research Ethics; Research Methodology; Research Personnel; Research Training; Resource-limited setting; Resources; Risk; Science; Sustainable Development; Technology; Testing; Time; Training; Translational Research; Trust; Underserved Population; Universities; Woman; Women' s Health; base; care systems; cell free DNA; clinical care; cohort; community based participatory research; community engagement; community organizations; community partnership; design; ethical legal social implication; ethnic minority; ethnic minority population; experience; fetal; genetic information; genetic testing; genome sequencing; health disparity; high risk; implementation intervention; implementation research; improved; infant morbidity/mortality; knowledge base; maternal serum; medical schools; member; mortality; new technology; obstetric care; perinatal morbidity; population based; prenatal; prenatal experience; prenatal testing; racial minority; rapid technique; research data dissemination; response; screening; screening program; screening services; skills; social; standard of care; tertiary care; underserved community; uptake; willingness

Research: 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 lead 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 African American 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.

研究：产前遗传服务在过去 4 年中以惊人的速度扩展， 使用母体血清中的游离胎盘 DNA 进行胎儿基因组测序的发展。一些 评论家预测，这项新技术可以对越来越多的细菌进行非侵入性测定。 广泛的母婴健康状况将改善产前护理，特别是在资源匮乏地区。 然而，现有产前筛查和诊断的采用率较低的研究对此提出了质疑。 即使消除了获取服务的结构性障碍。这些 差异导致一些人群的结果不同，包括更高的活产率 受遗传状况影响，母婴发病率和死亡率较高。我们将进行 对非裔美国人和拉丁裔妇女进行基于社区的参与性定性研究 种族来评估他们对接受产前遗传服务的理解和愿望。通过我们的 社区合作伙伴，我们将把我们的研究结果反馈给相关社区，以便 促进对未来干预措施进行富有成效的讨论，以增加少数族裔人口的获取机会。 候选人：我拥有科学技术研究博士学位，并接受过临床和研究伦理培训 与斯坦福大学和杜克大学的两个 NHGRI ELSI CEERS 合作。我的目标是成为一个独立的—— 资助的研究人员专注于妇女和儿童交叉点的社区参与性研究 健康、健康差异和遗传。为此，我本期培训目标如下： 1. 提高产前确定和交流遗传学和遗传风险的技能。 2. 提高社区参与和健康差异研究的技能 3. 建立社区伙伴关系，以便长期制定和实施干预措施 改善获得产前遗传护理的机会。 K 奖将使我能够寻求有关获得产前服务障碍的重要问题的答案 服务欠缺社区的遗传护理。这将使我能够接受社区参与培训， 遗传学和健康差异，并与该领域的研究人员建立联系，以合作传播 为了围绕减少孕妇之间的健康差异建立强大的研究组合 服务不足的人群。 指导和制度环境：我已经组建了强大的内部和外部指导 以及生物伦理学和产科护理领域的专家顾问团队来指导和支持我 研究和培训。该研究将在梅奥诊所进行，这是一家一流的研究机构， 获得广泛的遗传、健康服务和转化研究资源，这将加强我的努力 实现我的雄心勃勃的目标。