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: 10415022
• 负责人: Megan A. Allyse
• 金额: $ 14.05万
• 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 2023-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10415022
• 关键词: Advisory Committees; Affect; African American; 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 Personnel; Health Services; Health Services Research; Heart Abnormalities; Improve Access; Institution; Insurance; Insurance Coverage; Intervention; K-Series Research Career Programs; Knowledge; Latina; Lead; Link; Live Birth; Maternal Health; Medical Genetics; Medical Research; Mentorship; Minority Groups; 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; Reporting; Research; Research Design; Research Ethics; Research Methodology; Research Personnel; Research Training; Resources; Risk; Science; Structure; 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 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年里以惊人的速度扩张