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

研究：产前遗传服务在过去4年中以惊人的速度扩展， 使用母体血清中的无细胞胎盘DNA开发胎儿基因组测序。一些 评论家们预测，这种新技术，它允许非侵入性确定越来越多的 广泛的母婴健康状况，将改善产前护理，特别是在资源较低的地区。 然而，对现有产前筛查和诊断的低吸收率的研究提出了质疑。 在少数民族人口中，即使在获得服务的结构性障碍被消除的情况下，这些 差异导致一些人口的不同结果，包括较高的活产率 受遗传条件影响，母婴发病率和死亡率较高。我们会进行 以社区为基础的参与性定性研究，对非裔美国人和拉丁美洲妇女进行 调查的目的是评估她们对接受产前遗传服务的理解和意愿。通过我们 社区合作伙伴，我们将反馈我们的研究结果到社区的问题，以 促进就今后的干预措施进行富有成果的讨论，以增加少数民族人口的机会。 候选人：我拥有科学技术研究博士学位，并接受过临床和研究伦理学方面的培训 在斯坦福大学和杜克大学有两个NHGRI ELSI CEERS。我的目标是成为一个独立的- 资助的研究人员，重点是在妇女的交叉点社区为基础的参与性研究 健康、健康差距和遗传学。为此，我在这段培训期间的目标如下： 1.提高技能，确定和沟通遗传学和遗传风险在产前阶段。 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，以便长期发展和实施干预措施 以改善产前遗传护理的可及性。 K奖将使我能够寻找关于产前检查障碍的重要问题的答案 在服务不足的社区提供遗传护理。这将使我能够接受社区参与的培训， 并与该领域的研究人员建立联系， 为了建立一个强大的研究组合，围绕减少孕妇之间的健康差距， 服务不足的人群。 导师和机构环境：我已经组建了强大的内部和外部导师 在生物伦理学和产科护理领域的专家和咨询团队，以指导我和支持我的工作， 研究和培训。这项研究将在马约诊所进行，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 实现我的宏伟目标。

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.