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

摘要 哮喘是儿童最常见的慢性疾病，病情恶化往往与鼻病毒有关。 感染。哮喘表现出显著的健康差异，非裔美国人的患病率和发病率更高 与非西班牙裔白人儿童相比，这一差距更大，但造成这种差异的根本原因还不是很清楚。 我们正在进行的家长奖，简称为“压力、表观基因组学和哮喘”(SEA)研究试图探索 先前发表的少数族裔经历的慢性压力与哮喘之间的联系的机制 通过研究慢性应激对影响免疫的表观基因组变化的影响来研究风险和发病率 对鼻病毒等病毒感染的反应。解开慢性压力可能改变的机制 免疫和哮喘风险为精确医学干预措施的发展提供了潜在的靶点。 这可能会解决健康差距问题。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。本副刊建议增加一项生命伦理学 研究组成部分以海为研究对象，探索新兴社会领域中独特的生命伦理问题 表观基因组学。对SEA研究的家长参与者的深入访谈将探索参与者的体验 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。对原因的研究 符合条件的家庭拒绝参与SEA研究将进一步探讨 符合条件的研究人群。此外，与非裔美国人社区成员举行的焦点小组将 以家长奖为例，调查这个历史上被边缘化的社区对 社会表观基因组学，这一研究的潜在好处和风险，以及将风险降至最低的战略 非故意的群体伤害。这一补充将支持社会表观基因组学的生命伦理学研究。 调查以提供证据基础，为未来有关道德问题的政策提供信息，包括 同意、收集和链接敏感的社会和基因组信息以及传播调查结果 通过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.