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

总结 哮喘是最常见的慢性儿童疾病，其恶化通常与鼻病毒有关 感染哮喘显示出显著的健康差异，非洲裔美国人的患病率和发病率更高 在非西班牙裔儿童中，白色儿童比白人儿童更有优势，但这种差异的根本原因尚不清楚。 我们正在进行的父母奖，简称为“压力，表观基因组学和哮喘”（SEA）研究旨在探索 先前发表的少数民族慢性压力与哮喘之间联系的机制 通过研究慢性应激对影响免疫功能的表观基因组变化的影响， 对病毒感染如鼻病毒的反应。揭示慢性压力可能改变的机制 免疫力和哮喘风险为精确医学干预的发展提供了潜在目标 可以解决健康差距问题。然而，消极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，对参与者来说存在潜在的心理社会风险 以及对弱势群体造成意外群体伤害的风险。本补编建议增加一项生物伦理学 研究组成部分的SEA研究，探索独特的生物伦理问题，在新兴的社会领域， 表观基因组学在SEA研究中，对家长参与者的深入访谈将探讨参与者的经验 以及他们对哮喘及其他疾病的社会表观基因组研究的态度。原因研究 符合条件的家庭拒绝参与SEA研究将进一步探讨对研究的担忧， 合格的研究人群。此外，与非裔美国人社区成员举行的焦点小组会议将 以家长奖为例，调查这个历史上被边缘化的社区对以下问题的态度： 社会表观基因组学，潜在的好处和风险，这条线的研究，以及战略，以尽量减少风险， 非预期的人群伤害。这一补充将支持社会表观基因组学的生物伦理学研究 开展调查，提供证据基础，为今后有关道德问题的政策提供信息， 同意，收集和链接敏感的社会和基因组信息，并传播研究结果 以保护弱势群体的方式进行出版和数据共享。

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.