ELSIcon2022 • Panel Session 2 • May 31, 2022
Vanessa Hiratsuka, Bobby Saunkeah, Joon-Ho Yu, Alize Ece Gunay, Krystal Tsosie
The Belmont principles of respect for persons, beneficence, and justice prioritize a Western-centered ethos of individual autonomy, but these principles do not properly address communitarian ethics. Yet, sovereignty and solidarity often confer a standing and collective obligation to ensure equity of community participation in precision health and genomic research. Furthermore, including principles of sovereignty and solidarity offers the Belmont Report a processual guide to increasing inclusion and equity, in practice. A panel representing four ELSI research groups will discuss sovereignty and solidarity as necessary elements to extend research protections under the Belmont principles and derived Common Rule regulations to protect tribal and non-tribal communities engaged in research from group harms. The panel will discuss inclusive standards for research governance that would likely benefit from more widespread application of group consent, as well as other community-based research approaches and governance strategies. The panel will raise the question of whether solidarity, even when sovereignty is not present, is sufficient to grant such communities authority over governing research that pertains to them.