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: 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/10622369
• 关键词: Address; Advisory Committees; Affect; Back; Bioethics; Birth; Black Populations; Black race; COVID-19 pandemic; COVID-19 pandemic effects; Caring; Cells; Clinic; Clinical Ethics; Communities; Community Health; DNA; Data; Data Analyses; Data Collection; Data Set; Development; Diagnostic Services; Discipline of obstetrics; Doctor of Philosophy; Employment; Environment; Ethnic Origin; Event; Family member; Fetal Development; Fetal health; Fetus; Florida; Frontline worker; Funding; Future; Genetic; Genetic Diseases; Genetic Risk; Genetic Screening; Genetic Services; Genome; Goals; Grant; Health; Health Disparities Research; Health Services Research; Healthcare; Improve Access; Infection Control; Institution; Intervention; Interview; K-Series Research Career Programs; Laboratories; Latina; Latina Population; Link; Literature; Live Birth; Maintenance; Maternal Health; Medicaid; Medical; Mentorship; National Human Genome Research Institute; Neighborhood Health Center; Outcome; Patients; Policies; Population; Pregnancy; Pregnant Women; Prenatal care; Public Health; Publishing; Qualitative Methods; Qualitative Research; Reduce health disparities; Research; Research Ethics; Research Personnel; Research Project Grants; Research Training; Resource-limited setting; Resources; Sample Size; Sampling; Science; Supplementation; Target Populations; Technology; Telemedicine; Testing; Time; Training; Translational Research; Translations; Transportation; Underserved Population; Universities; Visit; Woman; Women' s Health; base; black women; care delivery; care systems; cell free DNA; clinical translation; community based participatory research; community engagement; community partnership; coronavirus disease; cost; design; disparity reduction; efficacy outcomes; ethical legal social implication; ethnic minority population; experience; fetal; food security; genetic information; genetic testing; genome sequencing; health care delivery; health disparity; implementation intervention; improved; infant morbidity/mortality; maternal serum; new technology; next generation sequencing; obstetric care; pandemic disease; parent grant; population based; pregnant; prenatal; prenatal experience; prenatal testing; rapid technique; recruit; response; safety net; screening; screening program; screening services; skills; social; social engagement; social health determinants; theories; underserved community; uptake; urban setting; willingness

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.

项目总结/摘要 在过去的4年里，产前遗传服务以惊人的速度扩展， 使用母体血清中的无细胞胎盘DNA进行胎儿基因组测序。有评论家预测， 这项新技术，允许非侵入性确定越来越广泛的母胎， 卫生条件，将改善产前护理，特别是在资源较低的地区。然而，这被称为 关于少数民族妇女接受现有产前筛查和诊断服务的比例较低的研究提出的问题 少数群体，即使在获得服务的结构性障碍被消除之后。这些差异导致了 某些人群的不同结果，包括受遗传因素影响的活产率较高， 条件和较高的母婴发病率和死亡率。我们将以社区为基础， 对黑人和拉丁裔妇女进行定性研究，以评估她们对 希望接受产前遗传服务。通过我们的社区合作伙伴，我们将为我们的 对有关社区进行研究，以促进就今后的干预措施进行富有成果的讨论， 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， 生物伦理学和产科护理领域的专家顾问团队指导我并支持我的研究， 训练这项研究将在马约诊所进行，这是一家一流的研究机构， 遗传，健康服务和转化研究资源，将加强我的努力，实现我的目标， 雄心勃勃的目标。

项目成果

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
• 作者: Allyse,Megan;Wick,Myra
• 通讯作者: Wick,Myra

What Really Matters Now in Prenatal Genetics.

• 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
• 作者: Riggan,KirstenA;Close,Sharron;Allyse,MeganA
• 通讯作者: Allyse,MeganA

Pregnant and Postpartum Patients' Views of COVID-19 Vaccination.

• DOI: 10.1007/s10900-022-01118-z
• 发表时间: 2022-10
• 期刊: JOURNAL OF COMMUNITY HEALTH
• 影响因子: 5.9
• 作者: Huang, Lily;Riggan, Kirsten A.;Ashby, Grayson B.;Rivera-Chiauzzi, Enid Y.;Allyse, Megan A.
• 通讯作者: Allyse, Megan A.