Why is the GC-PRO study being done?
The research team wants to understand the experiences of people from diverse backgrounds who meet with a genetic counselor. We know that many communities have been left out of research in the past. By learning more, we hope to improve genetic counseling for people of all backgrounds.
What happens in the study?
People who participate in the GC-PRO study complete 3 steps:
- A short survey before their genetic counseling visit
- Consent to audio record the genetic counseling visit
- A short survey after the visit about their experience
Participants are paid with a $30 electronic gift card if they complete the 3 steps above. Participants are also invited to a follow-up interview. If they complete the interview, they receive an additional $25 gift card.
Can I participate in the GC-PRO study?
You may be eligible to participate in the GC-PRO study if you or your child have been referred to a genetic counseling visit for any of the following reasons:
- You have a personal history of cancer, heart disease, general genetics condition, or are seeing a genetic counselor for prenatal/reproductive care.
- You have a family history of individuals with cancer, heart disease, general genetics condition(s), or reproductive/prenatal risks.
The study is recruiting patients at three locations:
- The M-Health Fairview system in Minnesota
- The University of South Florida-Tampa General Hospital
- Genome Medical, Inc. telehealth genetic counseling company
If you think you may be eligible for the GC-PRO study and have an upcoming genetic counseling appointment at any of the three locations listed above, please contact the research team at [email protected] or 612-626-6743.
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. The Community Advisory Boards in GC-PRO include:
- “Faith Works: Connecting for a Healthy Community” African American advisory board in Kansas and Missouri: https://faithworkskc.org/
- The University of Kansas JUNTOS Center for Advancing Latino Health advisory board in Kansas: https://www.juntosks.org/
- A new Somali community advisory board led by Dr. Abdirashid Shire in Minnesota
- A new 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.
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- Associate Professor, Director of Genetic Counseling
- GC-PRO Researcher
- University of Minnesota