Black community member perceptions and ethics recommendations on epigenomic research

Area of Science:

• Social epigenomics
• Health disparities research
• Bioethics

Background:

• Social epigenomics links social experiences to epigenetic changes impacting health.
• Research offers precision medicine potential but poses ethical challenges like stigmatization and misplaced responsibility.
• Historically marginalized communities face amplified risks, necessitating community engagement.

Purpose of the Study:

• To explore perceptions of social epigenomics research within the Black and African American (B/AA) population in the USA.
• To identify perceived benefits and risks among B/AA research participants, decliners, and community members.
• To develop strategies for maximizing benefits and minimizing risks in social epigenomics research for B/AA communities.

Main Methods:

• Study focused on the Black and African American (B/AA) population in the USA.
• Gathered perceptions from B/AA research participants, research decliners, and representative community members.
• Investigated attitudes towards social epigenomics research, including perceived benefits, risks, and mitigation strategies.

Main Results:

• Both B/AA research participants and community members perceived potential benefits of social epigenomics research.
• Community members identified specific and general risks, influenced by historical research injustices and mistrust.
• Community members proposed concrete strategies for risk mitigation and benefit enhancement, emphasizing transparency and engagement.

Conclusions:

• B/AA community members acknowledge potential health benefits alongside risks of individual and community harm from social epigenomics research.
• Implementing community recommendations is vital for conducting ethical and valid epigenomic research.
• Ethical research practices can address health disparities in historically marginalized communities.