Why is the GC-PRO study being done?
The goal of the GC-PRO study is to try to make genetic counseling better for people of all backgrounds. We are asking participants to complete two surveys and to allow audio recording of their genetic counseling visit. The purpose of the study is to understand whether trying different ways of doing genetic counseling will lead to better experiences for patients.
Can I participate in the GC-PRO study?
The study is now CLOSED and is no longer recruiting participants. The research team is now analyzing the information we gathered during the study.
If you participated in the GC-PRO study, please check back here for updates on our results!
Who are the people behind the study?
After working as genetic counselors for many years, Heather and Debi (the head researchers) questioned whether the way they communicated complex genetic information to patients was truly helping families. They are now trying to learn from patients about their experiences to make genetic counseling better for all people.
Heather and Debi are working with four community partnerships (called Community Advisory Boards) from underrepresented communities in research. These partnerships make sure that the GC-PRO study is being done in a way that is best for all communities by uplifting the voices of individuals that understand their community’s needs and preferences in research. The Community Advisory Boards in GC-PRO include:
- “Faith Works: Connecting for a Healthy Community” African American advisory board in Kansas and Missouri
- The University of Kansas JUNTOS Center for Advancing Latino Health advisory board in Kansas
- A newer Somali community advisory board led by Dr. Abdirashid Shire in Minnesota
- A newer Hmong community advisory board led by Dr. Kathie Culhane-Pera with members located across the country
Questions?
Contact us at [email protected] or 612-626-6743
Heather Zierhut, PhD, MS
Associate Professor, Director of Genetic Counseling
GC-PRO Researcher
University of Minnesota