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

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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.