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Moving toward Equity through Embedded ELSI Ethnography.

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    Embedded ethical, legal, and social implications (ELSI) ethnography offers unique value in genomic research. This approach provides real-time interventions for equity, inclusion, and justice, enhancing participant engagement and study design.

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    Area of Science:

    • Bioethics
    • Genomic Research
    • Social Science in Medicine

    Background:

    • Embedded Ethical, Legal, and Social Implications (ELSI) ethnography is a novel approach.
    • The WISDOM (Women Informed to Screen Depending on Measures of Risk) trial is a genomic-informed, risk-based breast cancer screening study.

    Purpose of the Study:

    • To describe the unique values, challenges, and opportunities of embedded ELSI ethnography.
    • To present examples of engagement between ELSI investigators and a scientific trial team.
    • To highlight the potential of ELSI to offer real-time interventions in genetic and genomic research.

    Main Methods:

    • Six-year embedded ELSI study of the WISDOM trial.
    • Multiple modes of engagement: bioethics consultation, ethnographic issue identification, and social science expertise application.
    • Analysis of the dynamic relationship between ethnographic observations, Bioethics Working Group discussions, and ELSI interventions.

    Main Results:

    • Embedded ELSI ethnography facilitated real-time interventions on complex bioethical issues, such as race-specific risk assessment.
    • Ethnographic findings identified ethical concerns perceived as logistical challenges by the trial team.
    • Social science expertise enabled on-the-spot engagement with issues of inclusion, such as transgender participant involvement.

    Conclusions:

    • Embedded ELSI ethnography provides significant value by integrating ethical and social science perspectives into genomic research.
    • This approach expands the role of ELSI, enabling real-time interventions to promote equity, inclusion, and justice.
    • The described methods offer a model for enhancing the ethical conduct and social responsiveness of genetic and genomic research.