To be relevant and impactful, it has become increasingly necessary for researchers to engage stakeholders outside the usual research communities, such as patients and community representatives. Yet, this type of engagement typically occurs in community-based participatory and patient-centered outcomes research, not large-scale genomics or precision medicine research. The All of Us Research Program, which will enroll at least 1 million participants from diverse backgrounds, has committed to actively engaging its participants as partners in all aspects of the program – from research design through governance. With guiding principles on privacy and trust and a mission to empower participants, All of Us intends to promote transparency, reciprocity and involvement of participant communities in the governance, oversight, design, implementation and evaluation of the program. This engaged and participant-centric approach represents a substantial shift in large biomedical research initiatives, which until recently had little, if any, public involvement. In this panel, we will discuss lessons learned by the All of Us Engagement Core in developing the infrastructure, tools and resources to meaningfully engage participants as partners. We will highlight important ELSI considerations related to:
1) identifying and selecting a diverse group of participants to engage in governance;
2) effectively engaging participants in these new roles;
3) assessing the impact of participant engagement on the research; and
4) preparing researchers, including those with limited experience in engagement, to work with participants in these roles.
Panelists: Alecia M. Fair, DrPH; Karriem Watson, DHSc, MS, MPH; Elizabeth Cohn, RN, PhD; Consuelo Wilkins, MD, MSCI
Videos in Series

ELSI Virtual Forum - CRISPR and Human Identity: Governing Germline Gene Editing

ELSI Virtual Forum - Ethical Frameworks for Research Collaboration with Indigenous Communities

ELSI Virtual Forum - To Catch a Killer: Law Enforcement Uses of DNA Databases
ELSI Virtual Forum - Welcome and Opening Remarks

ELSI Virtual Forum - Closing Remarks

ELSI Virtual Forum - Polygenic Risk Scores & Behavioral Traits: Interrogating the Science & Ethics

ELSI Virtual Forum - Integrating ELSI and Genomics: Past, Present and Future (Keynote)
