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：在过去的4年中，产前遗传服务以非凡的速度扩大 使用无细胞胎盘DNA在母体血清中开发胎儿基因组测序。一些 评论员预测，这项新技术允许越来越多的侵入性确定 各种各样的母亲健康状况将改善产前护理，尤其是在低资产阶级地区。 但是，通过研究降低现有产前筛查和诊断的研究，这一问题受到质疑 即使消除了访问结构障碍，少数民族人口中的服务也是如此。这些 差异导致一些人群的差异，包括较高的活产率 受遗传条件和较高的母体发病率和死亡率的影响。我们将进行 基于社区的参与性定性研究与非裔美国人和拉丁裔的妇女 种族评估他们对接受产前遗传服务的理解和渴望。通过我们的 社区合作伙伴，我们将为我们的研究结果提供回到有关社区的结果，以便 促进对未来干预措施的富有成果的讨论，以增加少数民族人口的机会。 候选人：我拥有科学和技术研究博士学位，并接受了临床和研究伦理的培训 在斯坦福大学和杜克大学，有两位NHGRI ELSI CEOS。我的目标是成为一个独立的 在妇女交集上关注基于社区的参与研究的研究人员 健康，健康差异和遗传学。为此，我在此培训期间的目标如下： 1。提高确定和传达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研究 3.建立社区伙伴关系，允许长期发展和实施干预措施 改善获得产前遗传护理的机会。 K奖将使我能够解决有关障碍的重要问题的答案 服务不足的社区中的遗传护理。这将使我能够接受社区参与的培训， 遗传学和健康差异，并与该领域的研究人员建立联系，以进行合作传播 为了建立围绕减少孕妇健康差异的强大研究组合 服务不足的人群。 指导和机构环境：我组装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专家的咨询团队，以指导我并支持我 研究和培训。该研究将在Mayo Clinic进行，这是一家主要的研究机构 获得广泛的遗传，卫生服务和翻译研究资源，以增强我的努力 实现我雄心勃勃的目标。