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Hastings Center News

New Project Seeks to Build Diverse Participation in Precision Medicine Research

Published Posted in Clinical Trials & Research Ethics, Health and Health Care

The Hastings Center is co-leading a new project to examine recruitment and retention of participants in the National Institutes of Health’s All of Us Research Program, an unprecedented initiative to collect genetic and other health-related data from at least one million people living in the United States. This project will focus on a research site that is a health center that serves primarily Latino and African American patients — groups historically underrepresented in research – to identify strategies to build engagement.

The project is led by Carolyn Neuhaus, a research scholar at The Hastings Center, and Johanna T. Crane, an associate professor in the Alden March Bioethics Institute at Albany Medical College. It is funded by the National Human Genome Research Institute of the National Institutes of Health.

Underrepresentation in research contributes to racial and ethnic health disparities in America, yet All of Us may facilitate the development of targeted therapies or other interventions that reduce health disparities. Still, some people from underrepresented groups are hesitant to enroll in biomedical research.  

Part of what makes All of Us unprecedented is its commitment to enrolling 75 percent of its research cohort from underrepresented groups. With their new project, Neuhaus and Crane seek to understand:

  • What motivates individuals to enroll or not enroll in All of Us, and why people do or don’t continue participating over time
  • How interviewees understand the commitment of All of Us to engaging research participants as partners.

Overall, the project seeks to build diverse participation in precision medicine research.  It aims to identify strategies for meaningfully engaging underrepresented populations in health research — in ways that match their values and expectations.

The project is an example of The Hastings Center’s commitment to creating more informed and more meaningful dialogue in the public square.