Sustaining Community Engagement in Genomics Research

The National Academies of Sciences, Engineering, and Medicine (NASEM) has published the report Sustaining Community Engagement in Genomics Research: Proceedings of a Workshop—in Brief, as a response to pressing challenges in the field. The proceedings from this public workshop, sponsored by the NASEM Roundtable on Genomics and Precision Health, explore the challenges and opportunities for building sustained relationships throughout the research process in genomics research. This report focuses on the imperative to build trust, involve diverse perspectives, and develop research that genuinely benefits all communities.

In July 2024, the NASEM Roundtable on Genomics and Precision Health convened a workshop to delve into strategies for fostering enduring community partnerships. The workshop drew leaders from genomics, bioethics, public health, and community engagement to discuss the obstacles and potential solutions to long-term collaboration. The event highlighted the necessity of creating reciprocal relationships where the voices and needs of historically marginalized groups guide the research agenda.

Division of Ethics Chief Sandra Soo-Jin Lee, PhD, co-chair of the workshop committee, stated “Sustained community engagement in genomics requires more than increasing enrollment; it demands a fundamental shift in research approaches to center historically marginalized voices and establish mechanisms for accountability and trustworthiness", underscoring the importance of embedding ethical, inclusive practices that transform how genomics research is conducted.

The proceedings outline specific recommendations for achieving these goals, including building long-term partnerships, implementing continuous feedback mechanisms, and integrating community priorities into research practices. They also stress the value of culturally competent approaches, where researchers not only understand but actively respect and incorporate diverse cultural perspectives. By doing so, genomics research can not only advance scientific knowledge but also improve health outcomes and equity in the communities involved.

NASEM’s focus on sustained community engagement is a call to action for genomics researchers to rethink traditional methods and to forge partnerships that endure beyond single studies. For genomics to meet its potential, especially in precision health, it must embody values of accountability, transparency, and trustworthiness.