Understanding the Expectations and Needs of Diverse Communities for Navigating Research Results

Summary:  Understanding the preferences and expectations of underrepresented communities for receiving genetic results in a research setting and navigating additional information and services in the clinical setting are critical to building and maintaining research relationships and engendering trust, particularly with groups who have historically not participated in biomedical research. The proposed supplement leverages a unique opportunity to investigate the preferences of African American and Hispanic/Latino communities, including the uninsured, who are being recruited into precision medicine research, for different types of genetic test results and their expectations and needs for information and resources to allow for informed, validated follow-up of research results and clinical care.

Narrative: This application builds on the R01 study the Ethics of Inclusion: Diversity in Precision Medicine Research and aims to investigate the preferences of African American and Hispanic/Latino communities, including the uninsured, who are being recruited into precision medicine research for different types of genetic test results and their expectations and needs for information and resources to allow for informed, validated follow-up of research results and clinical care.

Aims: Identify preferences of patients from underrepresented communities for the return of specific categories of genetic results and their expectations and needs to navigate follow-up care related to the return of research results.

Approach: Stakeholder-based investigation to include individual and group interviews of African American, Hispanic/Latino and/or uninsured individuals.

Longer-term:  Inform research guidance and policy.

Navigating Research Results Team:

  • Louise Bier, MS, CGC
  • Alejandra Aguirre, DrPH, MPH
  • Sonia Mendoza-Grey, MPH 
  • David Goldstein, PhD
  • Stephanie M. Fullerton, DPhil
  • Emily Vasquez, PhD, MPH
  • Melanie Jeske, PhD, MS
  • Michael Bentz, MPH
  • Nicole Foti, PhD
  • Aliya Saperstein, PhD
  • Janet K. Shim, PhD, MPP
  • Sandra Soo-Jin Lee, PhD