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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

基本信息

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
项目类别：
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

项目摘要

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.

总结