Ethical Implementation of Social Epigenomics Research on Asthma in a Health Disparity Population

健康差异人群哮喘社会表观基因组学研究的伦理实施

• 批准号: 10593404
• 负责人: Elin Grundberg
• 金额: $ 15.48万
• 依托单位: CHILDREN'S MERCY HOSP (KANSAS CITY, MO)
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-08-26 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10593404
• 关键词: Address; Affect; African American; African American population; Asthma; Attention; Attitude; Award; Benefits and Risks; Bioethical Issues; Bioethics; Biological; Biomedical Research; Child; Childhood; Chronic; Chronic Disease; Chronic stress; Collection; Communities; Consent; Development; Disease; Ensure; Environmental Exposure; Epigenetic Process; Ethical Issues; Ethics; Exposure to; Family; Focus Groups; Functional disorder; Future; Genetic; Health; Hispanic; Immune response; Immunity; Individual; Information Dissemination; Informed Consent; Institution; Intervention; Interview; Investigation; Lead; Link; Medical Research; Methods; Minority Groups; Modification; Morbidity - disease rate; Not Hispanic or Latino; Parents; Participant; Pathway interactions; Personal Satisfaction; Play; Policies; Population; Population Group; Population Study; Prevalence; Procedures; Publications; Publishing; Reduce health disparities; Reporting; Research; Rhinovirus; Rhinovirus infection; Risk; Risk Behaviors; Role; Sampling; Series; Social Perception; Stereotyping; Stigmatization; Stress; Structural Racism; Time; Trust; United States; Viral; Virus Diseases; Vulnerable Populations; adverse childhood events; asthma exacerbation; care seeking; data sharing; disorder risk; epigenomics; evidence base; experience; genomic data; health disparity; health disparity populations; infection risk; intergenerational; marginalized community; member; parent project; precision medicine; programs; psychosocial; racial discrimination; racial disparity; racial minority; racism; recruit; response; risk minimization; social; social genomics; social health determinants; social implication; social integration; social stigma; stressor; study population; systems research

SUMMARY Asthma is the most common chronic childhood condition and exacerbations are often linked to a rhinovirus infection. Asthma shows significant health disparities, with greater prevalence and morbidity in African American children than in white non-Hispanic children, but the underlying causes of this disparity is not well understood. Our ongoing parent award, abbreviated as the “Stress, Epigenomics and Asthma” (SEA) study seeks to explore a mechanism for previously published links between chronic stress experienced by racial minorities and asthma risk and morbidity through studying the impacts of chronic stress on epigenomic changes affecting immune response to viral infections such as rhinoviruses. Unraveling the mechanism by which chronic stress may alter immunity and, in turn, asthma risk offers potential targets for the development of precision medicine interventions that could address health disparities. Yet, the linking of negative social experiences to biological changes, particularly in a population that already experiences racism holds potential psychosocial risks for participants and risks of unintended group harm to a vulnerable population. This supplement proposes to add a bioethics research component to the SEA study to explore the unique bioethical issues in the emerging field of social epigenomics. In-depth interviews with parent participants in the SEA study will explore participant experiences with the study and their attitudes about social epigenomic research in asthma and beyond. The study of reasons eligible families decline participation in the SEA study will further explore concerns about the research in the eligible study population. Additionally, focus groups held with members of the African American community will use the parent award as an example to investigate attitudes in this historically marginalized community about social epigenomics, potential benefits and risks of this line of research, and strategies for minimizing risks of unintended population group harms. This supplement will support bioethics research on social epigenomics investigations to provide an evidence base to inform future policy around ethical issues including informed consent, the collection and linking of sensitive social and genomic information, and dissemination of findings through publication and data sharing in ways that protect vulnerable populations.

概括 哮喘是最常见的慢性儿童疾病，病情恶化通常与鼻病毒有关 哮喘显示出显着的健康差异，非洲裔美国人的患病率和发病率更高。 儿童的比例高于非西班牙裔白人儿童，但造成这种差异的根本原因尚不清楚。 我们正在进行的家长奖（缩写为“压力、表观基因组学和哮喘”（SEA）研究）旨在探索 先前发表的少数族裔经历的慢性压力与哮喘之间联系的机制 通过研究慢性压力对影响免疫的表观基因组变化的影响来了解风险和发病率 对鼻病毒等病毒感染的反应揭示了慢性压力可能改变的机制。 免疫力以及哮喘风险为精准医学干预措施的发展提供了潜在目标 然而，负面的社会经历与生物变化的联系， 特别是在已经经历过种族主义的人群中，对参与者具有潜在的社会心理风险 本补充建议增加生物伦理学内容。 SEA 研究的研究组成部分，旨在探索社会新兴领域中独特的生物伦理问题 表观基因组学对 SEA 研究参与者的家长进行深入访谈，探讨参与者的经历。 这项研究以及他们对哮喘及其他领域的社会表观基因组研究的态度。 符合资格的家庭拒绝参与 SEA 研究将进一步探讨对该研究的担忧 此外，还将与非裔美国人社区成员举行焦点小组讨论。 以家长奖为例，调查这个历史悠久的社区对以下问题的态度： 社会表观基因组学、该研究领域的潜在益处和风险以及最小化风险的策略 该补充品将支持社会表观基因组学的生物伦理学研究。 调查提供证据基础，为未来有关道德问题的政策提供信息，包括知情 同意、敏感社会和基因组信息的收集和链接以及研究结果的传播 通过出版和数据共享来保护弱势群体。